PYROLURIA & SEIZURES & CELIAC DISEASE: Aracadonic Acid, B6, D, and Zinc Deficiencies [Archive]

orthomolecular

10-18-2006, 02:45 PM

That's great that you feel better. I have pyroluria and low histamine levels. I have read that it is the low histamine that is related to food allergies or sensitivities, not the pyroluria. I do no have any food allergies or sensitivities.

I have also read these two conditions usually appear together, but not all of the time. There is an easy test for histamine levels I can explain for you, if you are interested. You can also have any doctor test your histamine levels with a blood sample.

Did your doctor tell you that you will have to eat a restricted diet for ever? I think some people do have an improvement with the food sensitivities and sometimes the food allergies when they balance their histamine levels and get their deficiencies back to normal.

I have discovered that I have a problem with my pancreas because of the b6 and zinc deficiency. I take digestive enzymes and bicarbonate to help support my pancreas. (I use enzymes both with food and on an empty stomach for the benefits that enzymes can provide like anti-inflammatory properties and some other stuff.) It is possible to have your doctor check your blood levels of some enzymes to see if there is any possible pancreatic problems. You don't sound all that young, but b6 and zinc do effect protein digestion, which can create problems for your pancreas. But after a certain age, and if you have eaten a diet high in cooked food, then you probably need to supplement enzymes (with food, at least) because the pancreas can be lacking in this function even without any deficiencies.

I personally think (only my theory now) that the digestive problem I had with the synthetic form of b6 (pyridoxine) had to do with lack of enzymes. The p-5-p form, I think, is not just the active form but has been converted already without needing the enzymes to do that. Pyridoxine hydrochloride is known for causing excess acid in the stomach. I had a problem with too much acid, and pressure building up when I ate a heavy meal. I would on ocassion have some acid reflux too. But, both the bicarb and the enxymes (with meals) corrected this problem for me right away. (Before I corrected my deficiencies I was using HCL supplements for my low stomach acid.)

I also think it may be possible to be deficient in some amino acids because of your history of b6 deficiency. One obvious one is taurine. Taurine is considered conditionally essential. The body normally doesn't need taurine because it can convert methionine into cysteine and then the cysteine is coverted in taurine. But this can only happen if there is enough b6 in the body. So having a b6 deficiency can mean some other problems which may appear later on. But both those nutrients, bc and zinc, do play an important role in breaking down proteins into amino acids.

I am not suggesting you try ot tackle ALL these issues in the beginning because that would make the number of supplements you take possibly overwhelming. Just trying to warn you that you may experience some "new developments" during your progress. But my experience has taught me that sometimes you think you are back to normal or very close to normal and then you find out that there is some other health issue related to your deficiencies.

jcc

10-18-2006, 03:37 PM

My young adult daughter had a test result of 39.

She responded well to B6 on a tip from mrsd long before we ever learned about or tested for Pyroluria. We saw positive changes in her seizures, mood swings, and sleep disturbances in response to a modest amount of P5P (50mg).

She is so-so on compliance with taking vitamins, and last fall slipped into a real slump (depression, anxiety). I finally contacted a doctor who specializes in Pyroluria, and within 3-4 weeks on a tailored regimen she was a new person. But then, she slips from compliance.

I think with her I have seen flares....that she usually hovers at a point that isn't too bad, but occasionally falls into full swing of symptoms.

Cara

Ona

10-19-2006, 11:13 AM

October 19, 2006

Hello Everyone,

I just sent an email to help get this group going. to the following people:

Talk to you all soon. . .

Ona:)

Ona

10-21-2006, 12:13 PM

October 21, 2006

Has anybody else experienced or read anything about Dark Thoughts occuring when a person's hormones change? :confused:

I think I've finally figured out how to manage them.
By taking a little "extra" PROZAC once a month for 7 days.

So far, so good. . . 3 months, now, and no problems. . . . Yea!

Any thoughts would be appreciated.
Thanks in advance, Ona :)

Ona

10-25-2006, 03:42 AM

Thought I'd post Stacey's question from the Tourette Forum, in here, with my previous reply.

Q: Anyone know the correct ratio of Omega 3:6:9 for Pyrolurics? :confused:

Thanx for your help. Ona :)

I think I would be asking the pyroluria experts out there, or anyone else who might be able to advise. Can someone please share with the correct ratio for 3:6:9 omegas that I should have in the the flax seed oil gel caps that I'm taking. Thanks. Stacey

The following is a link to another forum with the following quoted. It discusses Pyroluria and Flax/Fish/Borage oil (calpsules):

http://www.dmt123.com/alternative-medicine/462-dmt123-1.html--------------------------------------------------------------------------------
I have ADHD. It can sometimes be caused by a genetic disorder called Pyroluria. It is a genetic deficiency of vitamin B6 and zinc. At least 10% of the population has been found to have this disorder and so it is quite common. Stay away from anything with red or yellow food coloring....that makes it worse. Get Joan Matthews Larson's book, "Depression-Free Naturally...." this book deals with all kinds of conditions, not just depression....and she talks about attention deficit. This book changed my life....good luck.
--------------------------------------------------------------------------------
I have had wonderful results treating my sons ADHD with dietary ( organic everything I can get my hands on, and as low preservattive as I can get it) restrictions, VERY low if any sugar allowed, and a combination Flax/Fish/Borage oil (capsules) , plus a multivitamin high in Zinc, C, and B vitamins. I also use herbal remedies for any illnesses they have instead of medications - much fewer if any interactions. I am at www.windstarhealing.com if you have any questions.
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I have found, however, numerous references on the internet, such as the following, about NOT using Fish Oil or Omega-3s for people that are diagnosed with Pyroluria. . . and Flax is an Omega-3.

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria

Pyroluria (originally known as malvaria) is a genetic condition resulting in an abnormality in hemoglobin synthesis. People with pyroluria produce excess amounts of a byproduct from hemoglobin synthesis, called OHHPL (hydroxyhemoppyrrolin-2-one). In these people an excess amount of pyrrole is found in the urine. The most accurate test for pyroluria directly measures urinary pyrrole's.

“Pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the urine in excess.” (Carl Pfeiffer PhD, MD, 1983).

This abnormality leads to a higher excretion of vitamin B6 (pyridoxine) and zinc in the urine, with deficiencies (or borderline deficiencies) common. Changes in fatty acid metabolism often lead to low levels of arachidonic acid (an omega-6 fatty acid). The presence of pyroluria can have a profound effect on mental and physical health and was first discovered in relation to schizophrenia.

Chemical characteristics and nutritional treatment.

Common neurotransmitter imbalances: Low serotonin
Beneficial supplements: Vitamin B6, zinc, manganese and evening primrose oil
Potentially harmful supplements: Histidine, copper and omega-3 fatty acids

Hope this is helpful to someone.
Ciao for now,
Ona:)

Stacey

10-25-2006, 01:20 PM

carolyn_lsc

10-25-2006, 01:33 PM

I don't need support regarding Pyroluria as mine is under control, but I thought I'd post my initial results. I initially tested at 20 for pyroluria. I
re-tested every three months and eventually my last result was a 3. I haven't tested since then because I'm doing chelation therapy and my minerals are always checked every three months. I take zinc, b-6, flaxseed oil, and many other supplements.

Carolyn

Ona

10-25-2006, 02:05 PM

Flax oil is a combination of Omega 3,6,and 9's. Where as Fish oil is super concentrated Omega 3's only. I believe that I have Pyroluria (being tested for it in a few days) and I did horrible on fish oil (ticced much more). I'm taking Flax oil now which hasn't decreased any tics, but it hasn't increased any either like Fish oil did.

My nutritionist/allergist/metobolic specialist doctor tried me on Dricel Complex first for my Omega 3:6:9 ratio. However it was VERY difficult to take for me. . . I would immediately have an allergic reaction: my face would become puffy, I would feel naucious, and my eyebrows would furrow into an angry/concerned/disgusted kind of look.
Dricel Complex contains:
Vitamins A, C, E, & Riboflavin
Cold fish oil concentrate
Evening Primrose oil
Flax seed oil
Eicosapentaenoic Acid (EPA)
Docosahexaenoic Acid (DHA)
Gamma-Linolenic Acid (GLA)
Alpha-Linolenic Acid (ALA)
Linoleic Acid (LA)

Since I couldn't Tollerate the Dricelle Complex, for whatever reason, we decided to switch to the Dricelle EPO with the same basic ingredients, except a few are omitted, such as The Cold Fish Oil Concentrate. I think that's what did the trick. I'm highly allergic to fish when I'm in a Porphuric attack. . .I get the same reaction from fish as I do with the Dricelle Complex.

The Dricelle EPO is quite a relief. I can take it without any problems and it makes me feel more focused and clear minded, too. :)

Dricel E.P.O. contains:
Vitamins C, E, & Riboflavin
Evening Primrose oil
Gamma-Linolenic Acid (GLA)
Linoleic Acid (LA)
AND Does NOT contain:
Vitamin A
Cold fish oil concentrate
Flax seed oil
Eicosapentaenoic Acid (EPA)
Docosahexaenoic Acid (DHA)
Alpha-Linolenic Acid (ALA)

Hope this helps.

Ona:)

Ona

10-25-2006, 02:29 PM

I don't need support regarding Pyroluria as mine is under control, but I thought I'd post my initial results. . . I take zinc, b-6, flaxseed oil, and many other supplements.

Carolyn

I appreciate your feedback, Carolyn.
Pyroluria is one of those conditions that not many doctors know about.
So I feel, it is one that "we", as a community of Pyrolurics, must take the initiative to help eachother out with what information we have gathered, what has & has not worked for us in the past, and lend words of encouragement & wisdom to eachother.

Currently, my Pyroluria is under control, as well.
I tested 43, Strongly Positive for Pyroluria.

Range:
(0-10) Normal
(10-20) Borderline Pyroluric
(above 20) Strongly Positive for Pyroluria

I look forward to hearing from you again. Maybe it was only the cold fish oil concentrate that I was allergic to and not the flax seed oil.

I'll try adding some flax seed oil into my diet and see how my body reacts.
Evening Primrose Oil causes my seizures to flare up so I take an additional vitamin to balance that out. I take 200mg of Magnesium Glycinate to calm down the seizure activity that was agrivated by the Evening Primrose Oil and that seems to do the trick for me! ;)

Now it's time to add the Omega-3 flax seed oil and see if it's Ona-friendly.:rolleyes:

Ciao for now,
Ona :)

toni

10-27-2006, 07:22 PM

What I know is that I'm a recovered alcohlic, (5 years) I quit smoking 3 years ago, and I should be feeling better than I do. I have low vitamin D, I am enemic,
pretty low blood pressure, low serotonin and dopamine(from a nuerotransmitter test) I know about the blood/brain barrier but the testing is a useful indicator. I am getting ready to embark on the pyroluria testing after I first heard about it a month ago from a nutritionist. I also have low dhea and my cortisol levels are messed up. A week ago I started taking cymbalta because I felt I was started to sink and feeling discouraged in my efforts. Hoping to learn more!

orthomolecular

10-30-2006, 10:08 AM

Anyone with pyroluria should supplement omega 6. Either evening primrose oil or borage oil, but not flax seed or fish oil. ONLY the omega 6.

Ona

10-30-2006, 11:32 AM

Anyone with pyroluria should supplement omega 6. Either evening primrose oil or borage oil, but not flax seed or fish oil. ONLY the omega 6.

I have searched everywhere on the internet and have not found an explaination as to why Omega-3s should be avoided by Pyrolurics.:confused:

A Nutritionist MD told me to add a little of the DRICELLE COMPLEX into my supplements program to get the Omega-3s, as well as the Omega-6s from the DRICELLE E.P.O.

But I get sick, just "smelling" that stuff. So I haven't been do'n the DRICELLE COMPLEX (Omega-3s & 6s Blend) or the DRICELLE E.P.O. (Omega-6s Blend)

So, currently, I've stopped my DRICELLE E.P.O. becuase it was causing seizures.
So many complicated side-effects
So many supplements to take.

But, I do agree, I feel better when I'm do'n THE PROGRAM! ;)

Any advice would be greatly appreciated.

Respectfully,
Ona

orthomolecular

10-30-2006, 12:01 PM

I don't know if there is any reference to the other omega's for pyroluria. I just know that pyroluria means a deficiency in omega 6 (arachidonic acid). No reason to supplement the other fatty acids since they are not needed and may make the omega 6 levels seem lower relatively speaking.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3520252&dopt=Abstract

mrsdoubtfyre

10-31-2006, 11:18 AM

generalizing names for essential fatty acids. AA is a long chain fatty acid
synthesized from linoleic acid (which is an essential omega-6)

Our bodies require BOTH omega-3 and omega-6 for health. Alpha Linolenic Acid is abbreviated as ALA commonly and Linoleic is LA. Both are essential for the rest of the chemistry that changes them to long chain types which are biologically active.

This article explains it:
http://scholar.google.com/scholar?hl=en&lr=&q=cache:gmqTTLUCKvQJ:www.cpa-apc.org/Publications/Archives/CJP/2003/april/haag.asp+fish+oil+inhibits+dopamine+binding+to+d2+ receptor

Here are two articles that explain the chemistry ....
http://www.ajcn.org/cgi/content/full/71/1/343S

and

http://www.acnp.org/G4/GN401000059/CH059.html

This is a very complex subject. And dietary requirements are basic for these EFAs. Supplementing in excess of dietary requirements is a separate issue.
But one cannot live without either of them! ALA and LA

There is some concern and some anecdotal evidence that excess primrose/borage oil contain substances that may increase seizure potential.
you can read more here:
http://www.mayoclinic.com/health/evening-primrose-oil/NS_patient-Primrose

rashton83

11-05-2006, 02:42 PM

Thanks for starting this, Ona.

I had my Pyroluria test done in May or so with a result around 80.

I am 23.

Tests:

- Low adrenal cortisol levels (saliva test confirmed - 2002)
- Low-normal DHEA levels (saliva test confirmed - 2002)
- TSH usually around 2.0 (tested 1998 and 2003)
- Low basal temperatures
- Multiple food allergies noted in 2002 (went on very restrictive diet, felt worse and lost weight for 2 years), then none noted in 2006 (different mode of testing - doctor said 2006 test was more accurate)
- High levels of mercury and lead (urine provocation test - 2002, ???? test - 2005)
- Lyme disease (tested strong positive IgeneX both IgM and IgG - late 2004)
- Pyroluria (tested around 80 on urine test - early 2006)

Symptoms:

- Chronic fatigue
- Diffuse hair loss (started around age 15)
- Dark circles around eyes
- Constant infections (although better than it used to be)
- Sinus problems
- Lack of motivation

Currently taking P5P, Zinc, Evening Primrose, and balancing out the Zinc with 2MG Copper for Pyroluria.

I am also taking a general mineral supplement because I'm using Modified Citrus Pectin for heavy metals right now. On top of that, I may start on Armour thyroid soon - I'm going to check my basal temp soon as I have not done that in a while. If I start Armour, I will take Cortef for my low cortisol a few weeks before and a few weeks during. I have a bottle of Armour I ordered from the UK without a prescription. I believe it's only .25 grain. I will adjust it to my basal temps. I think they are far more accurate than blood tests anyway.

I also want to get retested for my cortisol/DHEA levels at some point. And, of course, my metals to see where I am on that. I will do that after my 90 days on the pectin.

Ona

11-08-2006, 12:35 PM

Thanks for starting this, Ona.

I had my Pyroluria test done in May or so with a result around 80.

I am 23.

I had my Pyroluria Test done in September of 2005 with a result of 43.

I am 29.

Hope things are going well for you.
Just stop'n in to say a quick hello. :cool:

So, Hello Rashton83 and WELCOME to this Pyroluria thread!
Have a great day, everyone. . .

Respectfully,
Ona :)

rashton83

11-14-2006, 12:50 AM

Donna1953

11-15-2006, 09:26 AM

I've just (today) come across information about Pyroluria. I've had so many of the symptoms for so long - and so did my mother - but I hope I'm not grabbing at straws here. I've been under alot of stress and am struggling to find balance. I was divorced this past year after being married for many years and now my mother passed away just last month. I'm feeling so alone that I sometimes don't know how to get through it. I'm not suicidal or anything like that so no one need worry. I'm a very intelligent and intuitive person and have sensed, through the worst of this stressful period, that something is "wrong" and that it often feels very physical and very much like an imbalance of some kind.
I have had so little support through this time and I guess I'm reaching out for help. I'm scared. I can't explain it any other way. I'm actually 53 years old but I feel like a 5 year old who "wants her Mommy!" I know it seems crazy to reach out to "strangers" this way and I don't know exactly why I don't have a support system for the first time in my life ... but I'm praying I can reverse some of these extreme stress symptoms I've been having and get my life back after this divorce. I'm diagnosed with PTSD (after a string of painful betrayals came to light at the end of this marriage) and now Agoraphobia as I don't feel comfortable out in the world anymore. I go to EMDR treatment which seems to help for a period but then it all seems to crash back down on me. When I read how quickly supplements seem to help Pyroluria I was encouraged but don't know where to go for help. Is there anyone out there who can relate and offer a few words of hope or support or who has a temporary compassionate wing? I know I may sound alittle crazy or needy at the moment but I'm really very sane and usually quite strong.
Thanks for listening... Donna [EMAIL="HilltopStudioB@aol.com"]

Ona

11-15-2006, 12:42 PM

I've been under alot of stress and am struggling to find balance.

Hello Donna! :)
Stress plays a major role in PYROLURIA.

There are many different kinds of stressors on the body:
Food Intollerances/Allergies (Guten, casein, corn, sweeteners, nuts, soy, etc)
Sleep Deprivation (Insomnia)
Vitamin Deficiencies (B6-Pyridoxal 5 Phospate, Zinc, Aracadonic Acid, D, etc)
Family & Friend affairs (Relationships) ...this is why Pyrolurics tend to isolate.

I'm a very intelligent and intuitive person and have sensed, through the worst of this stressful period, that something is "wrong" and that it often feels very physical and very much like an imbalance of some kind.

You could be very right! Listen to your "insticts", your "intuition", about what stressors to avoid, for you.

When I read how quickly supplements seem to help Pyroluria I was encouraged but don't know where to go for help. Is there anyone out there who can relate and offer a few words of hope or support or who has a temporary compassionate wing? I know I may sound alittle crazy or needy at the moment but I'm really very sane and usually quite strong.
Thanks for listening... Donna HilltopStudioB@aol.com

If a person truely "does" have PYROLURIA or a severe vitamin deficiency, then Vitamin Supplementation and/or a Food Ellimination Diet of food intollerances/allergies is the way to go!

USEFULL LINKS ABOUT PYROLURIA & TREATMENT:
Nutritionist/Allergist/Metabolic Specialist:http://www.drkaslow.com/html/pyroluria.html
Pyroluria Testing Kit:http://www.pyroluriatesting.com/?page=shop/flypage&product_id=1
Pyroluria & Elevated Kryptopyrrole:http://www.kryptopyrrole.com/
Health Research Institute:http://www.hriptc.org/
Doctoryourself & Pyroluria article:http://www.doctoryourself.com/hoffer_krypto.html
Urinalisis:http://en.wikipedia.org/wiki/Urinalysis
Pyroluria description:http://en.wikipedia.org/wiki/Pyroluria

Hope this information is helpful. If anyone has any questions, just let me know. :)

Pyroluria diagnosed: September of 2005
Seizure-free, No OCD behaviors, No longer Hormonally Imballenced, Manic-Depression is gone, Psychosis is gone, The stressors of daily living have been greatly reduced. I re-evaluated what kind of friends to include in my life. (the ones that produced the least amount of stress for me) ;)

I'm do'n great! 15 months strong! With minor tweeking of my medicines and vitamin supplementation, along the way.

I'm checked every 3 months for B6 and Zinc levels in my blood. That way, my hemotologist knows whether to increase or decrease my two major supplements, accordingly.

Hope this information is helpfull.
Talk to all of you later...

Respectfully, Ona :)

Ona

11-15-2006, 01:32 PM

Can everyone post their dosages?

DAILY DOSAGES:

B6 (Pyrodoxyl-5-Phosphate) 27.5 mg (for Pyroluria)
Zinc 21mg (for Pyroluria)
B12 600mcg (for Pyroluria)
Evening Primrose oil 1,000mg (for Pyroluria)
Q-Sorb 225mg of co-enzyme Q-10
Phyto Greens 4 caps (aids in digesting greasy foods & grains)
Lacto S-Forte 1-billion spungiform bacteria
Super D3 4,000 IU + Vitamin E 40 IU (Deficiency due to Rx)
Replete Extra 3 caps (Folate, L-Tyrosine, 5-HTP)
Acorus Tablets 5 tablets (stabilizes brain function)
Taurine 2,000mg (to help stabilize brain function)
Buffered Ascorbic Acid 3 caps (aids heavy metal secretion)
Thytrophin PMG 381.5mg (aids Hypothyroidism)
Magnesium Glycinate 200mg (to counter-act E.P.O. side-effects)
DEPAKOTE ER 1,500mg (aids in seizure control & sleep-aid)
TEGRETOL XR 1,000mg (aids in seizure & mania control)
PROZAC 20mg for 2 wks/30mg for 2 wks (aids in Hormone Imbalance/Depression/OCD)
RESPIRDAL 0.5mg (aids in not taking things "personally")

FOOD ALLERGENS THAT I HAVE ELIMINATED FROM MY DIET:
All Grains
All Sweeteners (except Stevia, an herbal sweetener)
All Cow's milk dairy (Goat/Sheep/Buffalo dairy is what I eat, now)
All Alcohols

I am doing "The No-Grain Diet" by Dr. Joseph Mercola...and I feel GREAT!

Hope all are doing well.

Have a great day!

Respectfully,
Ona :)

MichelleL

11-17-2006, 08:01 PM

Hello from Australia, I only heard of pyroluria in July 2006, the test has only recently become available in this country. Approximately 12 months ago in actively seeking health, I had all my many amalgam fillings removed followed by DMPS chelation plus mutiple IV vitamin C which helps a lot. I have two children and neither of them have flourished, and I felt that somehow they had been affected by the mercury in my body being passed onto them. So there seemed to be some sort of connection - hence the suggested testing for pyroluria (pyrroles). My first test came back at 4.5 (normal) and my son (25yo)severely depressed last 5 years returned a result of 300, prior to the test he had been gluten and dairy free with various suppliments over 4 months prior to testing. Because my son had such a positive result of pyroluria and I displayed many of the symptoms it was suggested that I be retested which I have done just recently but not yet received the results. I don't have any specific questions but it is great to have a place to go so that you don't feel quite so alone, and yes being a recluse has become a way of life.
MichelleL

Ona

11-18-2006, 10:43 AM

. . .there seemed to be some sort of connection - hence the suggested testing for pyroluria (pyrroles). My first test came back at 4.5 (normal) and my son (25yo)severely depressed last 5 years returned a result of 300, prior to the test he had been gluten and dairy free with various suppliments over 4 months prior to testing. Because my son had such a positive result of pyroluria and I displayed many of the symptoms it was suggested that I be retested which I have done just recently but not yet received the results. . .

MichelleL,

Did you send in your urine analysis to a lab in Australia or to The Brain-Bio Center located in Witchita, Kansas within th U.S.?

The reason why I ask, is because The Brain-Bio Center has the original testing equipmentm, created by Carl C. Phiffer, to test "correctly" for Pyroluria.

I've heard that some people will test "negative" at other labs, later to find out that they really "do" have Pyroluria--the lab equipment at the other laboratories were just not sensitive enough.

Anyway,
I'm glad you found this group.
This is quite a wonderful community forum.

Talk to you later, MichelleL. ;)

Respectfully,
Ona :)

hopabout

11-19-2006, 09:52 PM

I have read every post on here for a while now without registering. Pyroluria sounds like the "diagnosis" my family should have had a long time ago.
Of 22 people/from the 4 grandmas and grandpas down just about every "labeled" illness you all have listed on these pages, one of us has.. or a combination of several.

I did check out the Bio-lab place but don't see anything but getting the entire profile, etc. No, just send the urine to the lab ??? I am on social security and a small income at that. I don't have the money for extensive anything. But, my doctor here in Costa Rica (from Jax Fl.) just put me on Gamalate B6 with other things mentioned here and I have slept through the night for the first time in months!!! This has to be the right avenue, Pyro or not!

What labs have you guys been tested in that you feel confident with.
I see people with various high numbers ....... from where?
There is an ADHD lab that I wrote to and the lady is very nice. She said they had a high success rate. Sorry, don't remember the name of it.
I am out of the country and need to find a 24 hour transport that will get it there in time. We have FedX- etc.

OK, so now, I have the test.... and let's say it is positive for Pyroluria.
Then what. The severity of my illness and that of family members may take large dosages of the B6 P5P etc. and should be done with the correct dr. not the usual GP,Neuro that never told us about Pyroluria! How do you find the right doctor once you have a high number? I did write to one doctor and ask him. He said there was no book or organization..... ask the labs.

Thanks in advance for any help you can give me.

Hopabout/C.Ann

Ona

11-20-2006, 11:50 AM

I did check out the Bio-lab place but don't see anything but getting the entire profile, etc. No, just send the urine to the lab ??? I am on social security and a small income at that. I don't have the money for extensive anything.

The following is an excerpt from a previous post that I thought might be helpful.

One link is about an amazing nutritionist....very pricey, though.

I recommend, after receiving positive results on the urinary pyrroles test, to get a B6 and Zinc blood level drawn. This can be done by a hemotologist or ask your regular Primary Care Physician to write a lab order prescription for your blood work to be done by a lab that tests for B6 and Zinc levels in the blood. Hospitals are usually able to accomplish this type of lab order.

You might want to also get your T3 and T4 checked for Hypothyroidism (Low Thyroid).

Then, you and your doctor can supplement accordingly. :)

USEFULL LINKS ABOUT PYROLURIA & TREATMENT:
Nutritionist/Allergist/Metabolic Specialist:http://www.drkaslow.com/html/pyroluria.html
Pyroluria Testing Kit:http://www.pyroluriatesting.com/?page=shop/flypage&product_id=1
Health Research Institute:http://www.hriptc.org/

I'm checked every 3 months for B6 and Zinc levels in my blood. That way, my hemotologist knows whether to increase or decrease my two major supplements, accordingly.

Hope this information is helpfull.
Talk to all of you later...

Respectfully, Ona :) [/B][/COLOR]
[/COLOR]

Hopabout, The Pyroluria Test Kit, in the above link, should be accessible to you.

What labs have you guys been tested in that you feel confident with.
I see people with various high numbers ....... from where?
There is an ADHD lab that I wrote to and the lady is very nice. She said they had a high success rate. Sorry, don't remember the name of it.
I am out of the country and need to find a 24 hour transport that will get it there in time. We have FedX- etc.

This lab is located in Witchita, Kansas, in the U.S.A.

OK, so now, I have the test.... and let's say it is positive for Pyroluria.
Then what. The severity of my illness and that of family members may take large dosages of the B6 P5P etc. and should be done with the correct dr. not the usual GP,Neuro that never told us about Pyroluria! How do you find the right doctor once you have a high number? I did write to one doctor and ask him. He said there was no book or organization..... ask the labs.

Thanks in advance for any help you can give me.

Hopabout/C.Ann

My suggestion is to do your "own" research on Pyroluria.
Educate the doctors. Hopefully you will be fortunate to find a doctor that is "willing" to listen and learn from you.
Ask for B6 and Zinc blood levels to be drawn every 3 months or so, until your levels are neither deficient from the Pyroluria nor too high from taking too much vitamin supplementation.

Hope this has helped.

Best to all.

And good luck, Hopabout, with your quest to good health! :)

Respectfully,
Ona :)

MichelleL

11-21-2006, 12:45 AM

MichelleL,

Did you send in your urine analysis to a lab in Australia or to The Brain-Bio Center located in Witchita, Kansas within th U.S.?

The reason why I ask, is because The Brain-Bio Center has the original testing equipmentm, created by Carl C. Phiffer, to test "correctly" for Pyroluria.

I've heard that some people will test "negative" at other labs, later to find out that they really "do" have Pyroluria--the lab equipment at the other laboratories were just not sensitive enough.

Anyway,
I'm glad you found this group.
This is quite a wonderful community forum.

Talk to you later, MichelleL. ;)

Respectfully,
Ona :)

Hi Ona,
The urine test was done through SAFE Labs in Australia who use the Carl Pfeiffer Protocol, my second urine test results were 12.5 but the doctor that I am seeing with regard the the IV treatment is unfamiliar with this condition and as I research the info on the net I see that some of the suppliments that I have been taking are part of the recommended treatment. Over the last few days I have been extremely low both physically and mentally over the last year I have had extensive dental work done (replacing all amalgam filled teeth, extracting root canal filled teeth and fixed bridgework). The suppliments that I have not yet included are Omega 6 and P5P as I live in Australia I have not seen it available for purchase, I think it is only available on prescription from a compounding pharmacy. Today my doctor told me that he thought that I was deeply depressed and that the level of pain that I have in my teeth, face & head can be helped by taking an one of the older style antidepressants. I truely suspect that I am pyroluric? and need to find a doctor who can help me with rebalancing me.
It is good to have contact with somone who has come out the other side.
MichelleL

Ona

11-21-2006, 10:44 AM

Hi Ona,
The urine test was done through SAFE Labs in Australia who use the Carl Pfeiffer Protocol, my second urine test results were 12.5 but the doctor that I am seeing with regard the the IV treatment is unfamiliar with this condition and as I research the info on the net I see that some of the suppliments that I have been taking are part of the recommended treatment.

Dear MichelleL,

Did you "at least" stop taking vitamins & supplements (B6, P5P, Zinc) for three to four days prior to your urine analysis test?

If your body was somehow receiving supplementation of these very important vitamins, the test may come back as Negative for Pyroluria or as having a "reduced" amount of kryptopyrroles in the urine.

It is very important to be off all vitamin supplementation for 3 to 4 days to get an accurate reading of what your "true" kryptopyrrole levels in the urine are. Okay?

Once a person has found the correct program of supplements & vitamins, the test may be repeated "with" the vitamins, to see how well that individual has improved and lowered their kryptopyrrole levels in the urine.

However, for initial diagnosis of Pyroluria, no supplements should be taken for 3 to 4 days prior to doing the urine analysis testing. Again, this will help prevent inaccurate readings and allow for a higher number of kryptopyrroles to be present in the urine.

Range:
(0-10) Normal
(11-20) Borderline Pyroluric. . .needs treatment. . .may increase w/o supplementation and in times of great stress.
(above 20) Strongly Pyroluric. . .will benefit greatly from supplementation of the vitamins: B6, Zinc, and Aracadonic Acid (Omega-6)

Today my doctor told me that he thought that I was deeply depressed and that the level of pain that I have in my teeth, face & head can be helped by taking an one of the older style antidepressants. I truely suspect that I am pyroluric? and need to find a doctor who can help me with rebalancing me.
It is good to have contact with somone who has come out the other side.
MichelleL

MichelleL,

I, also, suffered from depression. It was worst, during my monthly Hormonal Imbalances. However, I have finally figured out how to properly balance out my hormones using the antidepressent: PROZAC

AT START: 20mg Prozac for 2 weeks, daily in the AM
OVULATION: 30mg Prozac for 1 week, daily in the AM
PERIOD: 40mg Prozac for 3 days, daily in the AM
DECREASE: 30mg Prozac for 4 days, daily in the AM
RESUME: 20mg Prozac for 2 weeks, daily in the AM

This dosing schedule is a little complicated. So, I have YAHOO! Calendar send me reminder messages on when to INCREASE/DECREASE my next dosage of Prozac, daily.

Now, I am no longer depressed, having suicidal thoughts, or other such unpleasant emotional responses when my hormones are imbalanced for 2 weeks out of every month. :)

Hope this was helpful to, someone.

Be well, all.

Respectfully,
Ona :) from California, USA

hopabout

11-25-2006, 08:17 AM

The beauty of living in Costa Rica is that when available, you can just go to the best labs here and ask for what you want. No need to go to the doc.
They do liver transplants in Costa Rica and open MRI. The labs are pretty good and my test results have been equal to what we determined when I went home to Florida and re-did them. Note to one post. I am hypothyroid (of course) and take med. I hate meds but I have 4 nodules, one is not nice and they insist. So.... thanks, will go to the lab this week.

Sparky2004

11-26-2006, 10:40 AM

Hi all! I'm brand new to this forum, all forums for that matter:)

I'm not sure if I'm in the right place but I need some serious help. Both my daughter and myself, along with a host of other family members, have biopsy proven Celiac Disease. We've both been completely, without fail, gluten free for at least two years.

Problem is, we both have severe fatigue, numbness and tingling and other difficult to describe symptoms. We do not seem to be able to convince our doctors that there is another autoimmune or neurological problem so therefore, we're living in chronic pain and debilitating fatigue daily.

Do any of you know where I can find information on muscle 'hardening' related to Celiac Disease? I have the best legs in North America, look great, over exercised so to speak and painful as ****!

Not sure but if I'm in the wrong place, can someone send me somewhere else that might be helpful!

Thanks,

Catherine

rose

11-26-2006, 03:08 PM

http://jccglutenfree.googlepages.com/

And Cara can probably be found at the gluten forum.

rose

Ona

12-20-2006, 05:39 PM

I don't know "why" I do this?!?!?!?!?
Maybe, it's because I'm tired of taking 50+ pills per day.
Maybe, it's because everything is just "too" normal.
Maybe, it is related to a hormone imballance?

Whatever the reason, I stop taking my vitamin supplements & prescription meds at the "same" time every month!

Now, I know this is unacceptable. I know this! Really, I do...

So regardless if my menstrual cycle actually begins or skips a month or two, I will be "hormonally imballanced" once a month for up to a week.

Hormone Imballances last 40 minutes & represent themselves in the following way:

"severe" depression

The refusal to be doing what I'm supposed to...
Refusing to "take care" of myself & my needs.

mild psychosis with pedophelia-like tendencies
(if this is the case, I isolate myself to my room. . .away from the world, until it passes)

clusters of seizures around the time of my scheduled hormone imballance.
(Catamenial Epilepsy)

So, I goofed! BIG TIME!!!
And now I have the next week until my brain-wave activity calms down and the seizure-activity has abated.

And I was doing SO well, too. :(

If anyone has any suggestions on how to COMBAT hormone-imballances such as "the refusal to taking medicine", rather "the refusal to doing what you are supoposed to be doing",. . . . I would greatly appreciate & welcome any advice. :)

Thanks in advance!

Respectfully,
Ona:)

Ona

01-08-2007, 04:56 PM

"Zinc Status" is a wonderful product. When my Zinc blood level was -35% and I tried "Zinc Status" for the first time, it was as tasteless as water.

I increased my Zinc to a range that would hopefully produce an outcome of an 85% Zinc blood level and 6 weeks later tried the "Zinc Status", once more.

Not only was I feeling better, my nails stronger, and my moods calmer, but the "Zinc Status" now had a metallic-taste to it. Hurray!:)

Without even getting another blood test for Zinc. . . I was able to tell that my Zinc levels were adaquate.

So, now, I'll get my Zinc blood levels tested, periodically, every 3 or 4 months, or so. And to keep track of my Zinc levels, I'll use "Zinc Status" once a month, for good measure. :D

The following, is information about the product, "Zinc Status":

General Information and datasheet (ETHICAL NUTRIENTS)

Zinc Status™
To Evaluate Zinc Status

Zinc Status is used as a simple screening method for evaluating zinc status. By placing two teaspoons of Zinc Status in the mouth, a lack of taste or a delayed taste perception suggests a possible zinc insufficiency. An immediate [metalic] taste perception suggests zinc status may be adequate. Zinc Status may also be swallowed as a supplement.

4 fl.oz. (120 ml) Bottle

TWO TEASPOONS (10 ML) SUPPLY:
Zinc (as zinc sulfate) 2.2 mg (in a base of distilled water)

Recommendations: Hold two teaspoons (10 ml) in the mouth for at least 10 seconds.
Liquid can be swallowed after tasting.

Suitable for vegetarians These statements have not been evaluated by the Food and Drug Administration.
This product is not intended to diagnose, treat, cure, or prevent any disease.

http://vitanetonline.com/description/EN0035/vitamins/Zinc-Status/

--------------------------------------------------------------------------

Zinc Challenge Liquid

Quantity Per Unit - 8 oz
Manufacturer - Designs For Health

Each two teaspons contains:
Zinc (from zinc sulfate dissolved in highly purified water) 8mg

ZINC CHALLENGE is an oral test used to determine zinc status in the body. Two teaspoons should be held in the mouth for 10 seconds and it could then be swallowed or expectorate. If immediate grimace and bitter metallic taste is detected, the zinc status is adequate. If it tastes like water and then builds to a metallic taste, then zinc status may be borderline or inadequate. If there is no metallic taste whatsoever, then zinc status is low.

Zinc is an essential part of hundreds of enzymes utilized throughout the body. Zinc is essential to the synthesis of DNA, RNA proteins, insulin and sperm. Zinc enhances wound healing and is also important to the senses of taste and smell. Recent studies indicate it plays a role in supporting the immune system.

ZINC may be useful in the treatment of the following:

Wound healing
Weak Immune System
Eating disorders
Schizophrenia
Lack of taste or smell
Mood disorders
Epilepsy
Multiple Sclerosis
Huntington's dyslexia
Dementia
ADHD
Ulcers
Eye health
GI problems
Bowel disorders
Rheumatoid Arthritis
Chemical sensitivities
Macular degeneration

...and of course, as "we" all know, Pyroluria

http://www.prohealthsolutions.com/productdetails33.html

Ona

01-08-2007, 07:20 PM

I have changed my Pyroluria Protocal PROGRAM.

On the "advice" of a close friend of mine, that has been diagnosed with pyroluria for over 30 years, and my wise mother, I am REDUCED my pill load to only what I "know" I need to take:

PRESCRIPTIONS, for now, anyway:
Tegretol XR (seizure-control)
Depakote ER (seizure-control)
Respirdal (helps with not taking things "personally")
Prozac (OCD control, helps manage depression)

(My hope, is to ↓ the Prozac as my Zinc & B6 levels become adaquate. Zinc levels may need to be ↑'d two weeks prior to start of menstrual cycle to avoid pyroluric pedophelia-like psychosis attacks. Similarly, B6 levels may need to be ↑'d if viollent nightmares occur. I will keep you updated on my progress.)

Current VITAMINS & SUPPLEMENTS:

B6 (Pyridoxal-5-Phosphate) 200mg daily (helps pyroluric-deficiency)

B6 (Pyridoxine HCl) "...adequate for dream recall (no more than 1,000mg)" daily
(helps pyroluric-deficiency)http://www.alternativementalhealth.com/articles/brainallergies.htm

Zinc 100mg daily . . . or until metalic-taste has been achieved using "Zinc Status".
Zinc levels will need to be adjusted as stress-levels ↑ and ↓ (helps pyroluric-deficiency)

"Zinc Status" or "Zinc Challenge" liquid "If immediate grimace and bitter metallic taste is detected, the zinc status is adequate. If it tastes like water and then builds to a metallic taste, then zinc status may be borderline or inadequate. If there is no metallic taste whatsoever, then zinc status is low. http://vitanetonline.com/description/EN0035/vitamins/Zinc-Status/
http://www.prohealthsolutions.com/productdetails33.html

1 Basic Multi-Vitamin daily (helps maintain other vitamin levels)

Phyto-Greens (a great supplement with all the green vegetables) (aids in propper digestion and as an appetite stimulant, for me. I can't eat food without it.)

Thytrophin PMG (supplement for Hypothyroidism)

Super-D3 (helps aid Vitamin D Deficiency due to prescription medications depleting the body of it's vital nutrients)

Foods that I am able to eat:
All Vegetables (my favorite is making spaghetti strips out of squash & carrots)
All Fruits (Oranges are a must, on my shopping list!)
Seeds & Nuts (my favorite is grinding them into flours & making pastries)
Potatoes (any style)
Goat/Sheep/Buffalo Milk Dairy
Almond Milk, unsweetened
Coconut Milk, unsweetened
Beef, Dark Turkey Meat, Clams, Pork Belly
Eggs (any style)
Coconut/Nut/Seed Flour Breads and pastries
Stevia (All Natural Herbal Sweetener)
Celtic Sea Salt
and LOTS and LOTS of Spices

RESTRICTED foods from my diet:
All Grains
All Sweeteners, except Stevia (an Herbal Sweetener)
All Cow's Milk Dairy
All Alcohol
All Caffeine
All Preservatives
All Food Dyes (especially Red & Yellow food dyes)
All Breads & Pastries (except those that I make using nut & seed flours)

My previous program of 50+ pills per day, w a s doing a pretty good job of controlling the symptoms of the Pyroluria. . . However, that was only w h e n I took the vitamin supplements and prescriptions at 7am, noon, and 7pm, religiously and without-fail! When I didn't. . . and started m i s s i n g doses or even going d a y s without taking my MediVites, as I so affectionately call them, my Pyroluric symptoms would return, in full-force.

So far, I've been on the above program for 3 weeks, now. I'm doing pretty good, too.:)

How I'm doing:

:) I've reduced my pill-load from 55-pills to about 30-pills a day.

:) And instead of taking 3-doses, I take 2-doses a day: 7am & 7pm!

:o Change has always been difficult for me, and I am still getting used to this "new" PYROLURIA PROTOCOL. I went for 2 weeks w/o missing a dose! AM or PM. . .but now I'm starting to slip again. Gotta get mad at my self:mad: and get tough! I don't want to relapse again.:o

:D I can eat! YEA!!! :) That's because of the Phyto-Greens! I must need s o m e t h i n g in them.

:cool: No severe mood swings, bipolar, or manic-depression.

:D No seizures, either!!! Wooo Whoo!!!

I'll keep you posted on my progress!

Hope everyone is well and is have a great begining to the new year!

Happy 2007, everyone!

Ona

wwebby

01-29-2007, 11:03 PM

Here are my issues...sounds similar to many of yours:
-Bipolar Disorder
-Hashimoto's Thyroiditis (hypo)
-Gluten intolerance
-Suspected Temporal Lobe Epilepsy
-Positive for Pyroluria

UGH...My most troubling symptoms are mood related. I just want my brain to function normally...I want my head to feel like how it felt 15 years ago before all this started.

So, this is what I'm doing right now:

-Gluten free, casein free
-75 mcg Synthroid
-1/2 grain Westthroid
-225 mg Lamictal
-1 mg Risperdal
-300 mg Wellbutrin
-30 mg Celexa
-multivitamin
-vitamin e
-b complex
-vit c
-1000 mg Evening Primrose Oil
-50 mg zinc
-250 mg B-6

-and I was taking Omega 3's (fish) for bipolar, but now I don't know what to do, because of the pyroluria. Should I ditch that and just take the Primrose Oil? It's hard finding ONE doctor to help me deal with all this. Everyone thinks they are separate conditions, but I see a lot of relationships between them all.

bye,
L.

copperhead

01-30-2007, 12:52 PM

I think you need to take the fish (or flax) oil and the EPO. I take both and I have pyroluria.

If you have a gluten problem then you may have low histamine levels. You can test your histamine levels yourself or by a blood sample with your doctor.

The way to test it yourself is to get some nicotinic acid (the niacin that causes the flushing). Get this in 50 mg. dose. Take one dose of this on an empty stomach and see if that causes a flush. You are testing to see what dose will cause a flush for you. You have to wait several hours to test the next dose. It can take as much as 250 mg. to cause a flush if you have low histamine levels. 100 mg. will cause a normal histamine level person to flush.

Taking niacin is how you would correct your low histamine levels. Niacin is so important for brain function, without it your brain does not have enough NAD. If you have low histamine levels then you will need to take several grams of niacin (nicotinic acid) every day. I think you may be missing this aspect of your supplements.

But this is something you should really do under medical supervision.

Ona

01-30-2007, 01:57 PM

UGH...My most troubling symptoms are mood related. I just want my brain to function normally...I want my head to feel like how it felt 15 years ago before all this started.

I will get back to you, soon. I have forwarded your message to a Pyroluric mentor of mine. He has been managing his Pyroluria for nearly 40 years, now. We will put our heads together and I will get back to you, shortly.

Be well.

Respectfully,

Ona:)

Ona

01-31-2007, 12:15 AM

UGH...My most troubling symptoms are mood related. I just want my brain to function normally...I want my head to feel like how it felt 15 years ago before all this started.

The following is what my friend and I have recommended, for you. With the information that you have provided to the forum.

My Pyroluric Mentor's Opinion:

Ditch the fish oil change to Borage oil and/or Flax Seed Oil. Both are high in Omega 6.
However, in "my" experience, Borage oil & Evening Primrose oil should be avoided by "some" people that have a seizure condition. When I take Evening Primrose Oil, the seizure-threshold of my anti-epileptic drugs (AEDs) is lowered, causing seizures to occur. This doesn't mean it will happen to everyone. But watch-out for seizures occuring when taking any vitamin, food, medication, or ingesting ANYTHING, for that matter. I keep a seizure/mood/hormone-imbalances journal, just for instances like this.
Instead, I supplement my Aracodonic-Acid Deficiency (Omega-6) with Pumpkin Seeds. Pumpkin Seeds are mostly Omega-6 with very little Omega-3, in comparison. Pumpkin Seed flour makes great pastries, too. Just grind the Pumpkin Seeds into a fine flour using a blender or chopper-machine. Yum!:)

:confused:How is this individual's dream recall?
Remember the rule of thumb is 2-3 pleasant dreams (recall) per week.
Based on the results of that, her zinc and B-6 levels may fall short.

I also recommend insisting on changing from the synthetic Thyroid Hormone, Synthroid, to Armour Thyroid which is a pure & natural hormone. He is right! I, too, take a natural hormone...less possibility for medication/vitamin conflicts and possible side-effects. Personally, I take the natural supplement hormone called Thytrophin PMG for my Hypothyroidism. It works great, for me! I feel so much better with it.:)

Also, she should take her basal temperature to see if her thyroid hormone is being absorbed on a cellular basis.

Let me know how else I can help.
B. Yes, if you have any more questions for the group, please ask away. We're here for YOU! You're not alone.

Be well. :)

All my best. . .

Respectfully,
Ona :)

Mariel

02-10-2007, 11:44 PM

I was just told Braintalk was back up, so I checked out the MS and Porphyria forums. I had been on them many years.

I do not know if I have Pyroluria but it may be present in some with Porphyria. In any case, I have taken p5p, small dose zinc and manganese for many years. I cannot tolerate more than a tad of Omega 3, and on a test I was shown to be 3 times normal in Omega 3. That means no fish oil, borage, or flax. It is interesting that Omega 6 might help--what is that in? That is, where is it high?
I use olive and canola oils to cook.

I now react even to fish, so rarely eat any. Only a tiny bit of Alaska salmon canned when my husband uses a can.

I don't know if I have seizures other than the myoclonus of my lower spine and legs if I don't get enough magnesium and B1. I use these instead of any drugs to control the situation, which comes on at night or when lying down relaxed. It absolutely requires high dose magnesium and B1.

Am not aware of any problem with grains. I do not think I have celiac. I do avoid rye because of the mold inherent in it, which is bad for porphyria.

I am depressed now and would like some help, but I am unable to take any anti-depressants because of porphyria.

The p-5-p has been a marvelous help, and I also take the B complex sublingual from the firm from which I get p-5-p. I cannot tolerate ordinary B6 except in tiny doses, so p-5-p enables me to take a total of about 36 units a day (including that which is in the B complex). I used to take 50 mg but i don't think I need that much most of the time.

Mariel

mrsdoubtfyre

02-11-2007, 08:30 AM

I remember you, Mariel.

I am doing a light therapy experiment at the moment and am having very good
success, so far.

You can read about it here...
*******************************.com/showthread.php?t=12301

It is a non-drug way to improve some functioning. I have links as to
the place I bought my visor on that thread.

Most of us eat enough omega-6s without needing any supplement.
What happens to you when you use fish oil? In what way do you not tolerate it?
I am just curious.

Mariel

02-11-2007, 10:50 AM

Hi, I remember you, too, from the Porphyria Forum. I just posted there, and of course was directed here by Ona.

Fish oil, borage oil, and even evening primrose oil give me spasticity and the pain which goes with that, anxiety. When I was younger, I did take Evening Primrose and it helped my energy so I was able to work a few years longer. But when I tried it again in my sixties, could not take it.

I do not fit the pattern set forth by Ona in these respects: most prominently, having porphyria, I cannot take the psychotropic drugs she takes, such as Prozac, etc., and now the Depakote. These drugs are VERY VERY bad for people with porphyria. I was given them ignorantly, and immediately had to stop them.
Also, I do not think I react badly to grains.

I had a test of my fatty acids some time ago, before the porphyria dx, and it showed 3 times normal on Omega 3. The naturopath had no idea what to do with this information. I was somewhat low on Omega 6, but not dramatically so.
I find I do better on the oils which are not high in Omega 3, although all oils have some of these....that is, I thrive on olive and canola, and I can take Safflower, although rarely use this unless it's in a product I buy, such as a cookie...in other words, safflower is OK, but not what I usually use.

I have heard of Kryptopyolluria on a Porphyria news group, and it seems to be the thing which produces the violet hue we sometimes get in urine? or stool? I am in doubt about this as I have no direct doctor knowledge of a relationship between Porphyria and Kryptopyolluria. But I have found for a LONG time that I need the p-5-p (premetabolized B6) zinc (l8 mg a day) and Manganese (5 mg), which are recommended for a "related" disorder which you can read about under HPU. Google HPU. As far as we can see HPU is another way to refer to Porphyria. the HPU site is Dutch, and does not use the word Porphyria.

All these mysterious interrelationships!

Have you a Porphyria dx now? I am still operating under my HCP dx but can't find addequate care here where I have to live because we own this house in New Mexico. I would have to travel 200 miles round trip to even see a hemo in Albuquerque, and they might not know a thing about Porphyria or Krytopyolluria.

In any case, I took a little Boswellia last night, an herb I've used sometimes for inflammation, because I looked up Pyolluria on line and found that sometimes people have too much (yes, too much) Omega 6 and need to detox it in order to stop inflammation. And Boswellia was the suggested remedy.

I am not doing too well. But am old now!

Mariel

copperhead

02-12-2007, 03:27 PM

Pyrroles if put into a ring formation are porphyrins. So the relationship between pyrroles and porphryins is close but not quite the same thing.

And my understanding is that both substances, pyrroles and porphyrins, will turn the urine a reddish shade when oxidized.

I have also read that sometimes when there is exposure to mercury that may cause an increase in porphyrins in the urine. Mercury is the main metal to cause this but some others may be likely too.

Jumbaya

03-25-2007, 11:15 AM

I am a fifty year old woman and I live in North Wales.
I have a 29 year old son who seven weeks ago was diagnosed with pyroluria. He is now taking vitamin B, Zinc and EPO (on the recommendation of a nutritionist).
I can already see some improvement in him as he now talks to people (....but only when he has to). He still shuts himself away in his room to avoid having to talk to anyone.
Is this normal or should he have emerged by now?
Can anybody tell me when he will become more sociable?
And is there anything I can do to help or encourage him?

Thank you

jcc

03-26-2007, 07:17 PM

I just wanted to say hi and welcome you. I'm not sure I can really help you with your questions.

My daughter did have much less social anxiety within 4-6 weeks of beginning the vitamin therapy. We began it over a semester break from college, and when she returned to school she said there was a night/day difference...although she wasn't absolutely sure what to attribute the change too.. just happy things were better. I'm convinced it was the vitamins that pulled her out of her depression/anxiety. She had also been holed up in her room, avoiding contact with other people.

She did have some counseling years previous for depression/anxiety, and she did do some "self help" type reading more recently. Understanding her personality type, which has some bearing for her, has helped too for coping strategies. I cannot remember the book that was initially recommended, but if mrsdoubtfyre is reading... she will remember for me. After my daughter scored off the charts in the first book for being highly sensitive, she found an author devoted to writing about this type of personality. These books have helped alot, along with the nutritional supplements.

She is sort of on and off with her vitamins, but has reached a point where if she knows she's under increasing stresses... she will get compliant about taking her vitamins (at least the most important ones), and has not plummeted since.

I just wish we had more information about this, and that more doctors were familiar with the condition and could provide more guidance for the questions we have. I hope some others might have some better answers for you.

Cara

era

05-19-2007, 05:11 PM

Can everyone post their dosages?

I am 175 pounds, male, and am taking the following:

50mg Zinc
50mg P5P
Evening Primrose Oil (can't remember amount)

then at a seperate time

2 Perque Bone Guard tablets (provides other minerals)

I'm a 178 lb. male who was recently diagnosed with pyroluria after a
15-year bout with several symptoms that are classic pyroluric. This
diagnosis was missed by a boatload of conventional M.D.s, including
one nationally-known "metabolic" doctor.

My test came in at 16 (as I recall, that means I have 16 mcg/dl pyrroles
in the urine sample). Since my test result was in the 10-20 "gray zone",
my new doc said I should try treatment anyway. I'm not sure if this was
based on his experience, or because the test tends to be inaccurate, or
something else ... but it turned out to be excellent advice.

I am currently on 3 capsules daily (morning, noon, night) of a preparation
this doctor has available, named "pyroluria formula". Each capsule contains
the following: zinc picolinate @ 12.5mg; manganese citrate @ 1.66mg;
P5P @ 16.6mg; pyridoxine HCl @ 83.3mg; niacinamide @ 166.6mg;
pantothenic acid @ 166.6mg; magnesium citrate @ 66.6mg. This doctor
also suggested I take GABA @ 750mg, twice daily. He hasn't specifically
suggested anything else, such as evening primrose oil, which I've seen
mentioned some places. I've stayed on the supplements I was taking before,
which include daily: 94mcg thyroid as T4 (I had Hashimoto's before going
off gluten, which triggered autoimmunity big-time); 12mg DHEA; 4 grams
glutamine; fish oil; a multivitamin; 2 grams vitamin C; 800 IU vitamin E;
and a chewable calcium-magnesium supplement. Occasionally I take a
dose of NZ whey powder to boost my protein intake.

So, the bottom line is that I'm on 300mg B6 (mixture of P5P and pyridoxine),
and 37.5mg zinc daily. Adding this 35 cents worth of vitamins to my supplements has made a HUGE difference. I had terrible bouts of insomnia
for 15 years; I now sleep soundly every night. The problems I previously
had with anxiety/internal tension are gone, and there are no side-effects
like I had when I was using benzodiazepenes, SSRIs, etc. at the request
of conventional M.D.s.

Interestingly, I get a good result on 3 capsules of this "pyroluria formula",
but not so good results on a higher dose. The doctor suggested I start
with 6 capsules. I started feeling better quickly, then started feeling
not-so-good after a few weeks. I had to experiment to determine that
3 capsules daily is what I need, and more is NOT better.

The only problem I still have is that, although I've been following a pretty
careful gluten-free diet, I still have a positive response to gluten, as shown
by testing. Apparently finding and getting that last tiny bit of gluten out of
one's diet, is quite difficult.

tall_blue_eyes

05-31-2007, 04:25 AM

Ona

06-08-2007, 10:16 AM

Hi,

I was wondering if anyone on here can help me. I saw that one of the symptoms of pyroluria is anxiety/nervousness. Does that sometimes manifest itself as excessive sweating?

I'd be very grateful if you could help me out as I'm trying to find out what's causing a sweating problem that seems (in part, at least) linked to nervousness.

Thanks very much

Well,
From what I have read, on the Internet, I have not seen "excessive sweating" as a specific symptom of pyroluria. However, anxiety/nervousness disorders are very common and if that is what, you believe, is the TRIGGER, then I would definitely give the KRYPTOPYRROLE TEST a try.

Kryptopyrrole Test for Pyroluria http://www.pyroluriatesting.com/?page=shop/browse&category_id=2&CLSN_1407=11813101361407418c406496798781e1

If POSTIVE for Pyroluria, supplementation is with vitamin B6 (pyridoxine HCl), P5P (pyridoxal 5 phospate) the "active" form of B6, and zinc.

It is important NOT to be taking any supplements for 3 to 4 days "prior" to taking the urinary analysis test for Pyroluria.

Good luck!

Respectfully, Ona :)

Ona

06-08-2007, 12:33 PM

My PYROLURIA PROTOCAL has remained unchanged since March 30, 2007!

PRESCRIPTIONS, soon to be reduced, in JULY 2007:
Tegretol XR (seizure-control)
Depakote ER (seizure-control, prevents insomnia)
Respirdal (helps with not taking things "personally")
Prozac (OCD control, helps manage depression)

(My hope, is still to ↓ the Prozac as my Zinc & B6 levels become adaquate. In the begining of July 2007, I will be working with an open-mided psychiatrist. He is willing to work with me with a medical diagnosis of Acute Intermitent Porphyria - AIP. Pyroluria is the schizophrenic-form of Porphyria and he SURPRISINGLY knows about Porphyria. I am very excited to work with him! We will be changing my Tegretol to Trileptol, ↓ing the Depakote, and possibly switching to a different anti-psychotic that doesn't interfere with lowering the seizure-threshold of my AEDs.

Zinc levels DO need to be ↑'d two weeks prior to start of my menstrual cycle to avoid pyroluric pedophelia-like psychosis attacks. Avoidance of all NEGATIVE stimuli is a MUST, at this time! No violent T.V. shows, movies, or news. My thoughts are just too easily influenced. Similarly, B6 levels need to be ↑'d when viollent nightmares occur. I will continue to keep you updated on my progress.)

Current VITAMINS & SUPPLEMENTS at of March 30, 2007:

B6 (Pyridoxal-5-Phosphate) 200mg daily (helps pyroluric-deficiency)

B6 (Pyridoxine HCl) I NEED 1200mg daily. However, the recommendation is:"...adequate for dream recall (no more than 1,000mg)" (helps pyroluric-deficiency)http://www.alternativementalhealth.c...nallergies.htm

Zinc I now NEED 500 - 700mg daily . . . or until metalic-taste has been achieved using "Zinc Status".
Zinc levels will need to be adjusted as stress-levels ↑ and ↓ (helps pyroluric-deficiency)

"Zinc Status" or "Zinc Challenge" liquid "If immediate grimace and bitter metallic taste is detected, the zinc status is adequate. If it tastes like water and then builds to a metallic taste, then zinc status may be borderline or inadequate. If there is no metallic taste whatsoever, then zinc status is low. http://vitanetonline.com/description...s/Zinc-Status/
http://www.prohealthsolutions.com/productdetails33.html

Basic Multi-Vitamin 1 capsule daily (helps maintain other vitamin levels)

Phyto-Greens (a great supplement with all the green vegetables) (aids in propper digestion and as an appetite stimulant, for me. I can't eat food without it.)

Thytrophin PMG (bovine thyroid supplement for Hypothyroidism)

Super-D3 2,000 IU (helps aid Vitamin D Deficiency due to prescription medications depleting the body of it's vital nutrients)

Foods that I am able to eat:
All Vegetables (my favorite is making spaghetti strips out of squash & carrots)
All Fruits (Oranges are a must, on my shopping list!)
Seeds & Nuts (my favorite is grinding them into flours & making pastries)
Potatoes (baked, boiled, mashed)
Goat/Sheep/Buffalo Yogurts
Cheeses (Munster, Motzarella, Swiss, Monteray Jack)
Almond Milk, unsweetened
Coconut Milk, unsweetened
Orange Juice, fresh squeezed
Water (½ my body weight:120 lbs → in ounces of water:60 oz per day)
Beef, Dark Turkey Meat, Clams, Pork Belly, (uncurred & nitrite-free meats)
Eggs (hard boiled or poached)
Coconut/Nut/Seed Flour, breads and pastries
Stevia (All Natural Herbal Sweetener)
Any type of Sea Salt (I prefer "Celtic Sea Salt")
And LOTS and LOTS of YUMMY Spices! :D

RESTRICTED foods from my diet:
All Grains
All Sweeteners, except Stevia (an Herbal Sweetener)
Cow's Milk (except in cheese form)
All Alcohol
All Caffeine
All Preservatives
All Food Dyes (especially Red & Yellow food dyes)
All Breads & Pastries (except those that I make using nut & seed flours)
All Fried foods

So far, I've been on the above program for 2 ½ months, now. That's AMAZING, to me. No CHANGES and I'm doing GREAT!

How I'm doing:

I've slightly increased my pill-load to 32 pills a day. However, I am doing research about locating LARGER orthomolecular doses of B6 (pyridoxine HCl) and Zinc. I've located Vitamin B6 (500mg vegi capsules) - 100 count, from SOLGAR! http://www.vitaminusa.com/00-33984-03140.html I am still searching for a Zinc that is larger than 100mg per capsule/tablet.

I am, still, taking 2-doses a day: 7am & 7pm! It works GREAT, for me.

Change is still difficult for me. Whenever I change my work-schedule, routine, or dosages of my PYROLURIA PROTOCOL, it takes me a good 2 weeks for me to get back on track, again. I'll notice that I'm starting to slip again and my pyroluric symptoms will begin to return after about 3 or 4 days of being off my PYROLURIA PROTOCAL. Then, it usually takes me a few days to get back in gear, organize my routine, food, vitamins & prescriptions (my Medi-vites) to get BACK ON TRACK, again! I've gotta constantly remind myself WHY I am sticking to my PYROLURIA PROTOCAL. So I usually get mad at myself, get tough, and FORCE myself to re-read my journal entries of my progressively worsening pyroluric symptoms since STOPPING the protocal! This usually SNAPS me back into gear and I'll re-read OLD entries of how bad it's going to get if I don't get back on my PYROLURIA PROTOCAL. I definitely do not want to relapse, AGAIN. :o

I can, still, eat! YEA!!! That's because of the Phyto-Greens! I must need s o m e t h i n g in them. However, since reducing my vitamins from 50+ pills a day to 32 pills a day, I absolutely can NOT eat fried foods. But LESS pills to take. :) It's a trade-off, I know. . . but it's worth it, to me.

No severe mood swings, bipolar, or manic-depression.

No seizures, either!!! Wooo Whoo!!!

My menstrual cycle has even become REGULAR, as of October 2006! I used to never know when it would start, next. (9 weeks, 13 weeks, 7 weeks, 11 weeks?) My cylce, now, starts every 4 weeks and has been for the last 8 months! Yeah! :D I DO believe it had something to do with the complete elimination of, the grain, rice from my diet. Interesting, isn't it? hmmm... :rolleyes:

I'll definitely keep you posted on my progress!

Be well, everyone and feel free to post to the forum or send me an email, if you have any questions.

Respectfully, Ona :)

era

06-08-2007, 04:44 PM

October 19, 2006

Hello Everyone,

I just sent an email to help get this group going. to the following people:

Talk to you all soon. . .

Ona:)

I had a 15+ year illness that was ultimately resolved, but it was a long hard grind. I'm now wondering if there is a causal relationship: could gluten intolerance leading to thyroid failure, in turn lead to pyroluria?

I put the history of this illness up at the URL below. If anyone cares to read it, tell me what you think. I have no reason whatsoever to believe that I had gluten intolerance and pyroluria when I was young.

ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm

Mariel

06-10-2007, 03:21 PM

I have HCP Porphyria, and years ago I started the now virtually defunct Porphyria forum at Braintalk. Malevolent posters destroyed it years ago when it had many posters.

I saw your link again, Ona, and came to read, to see how Pyrolluria differs from more common acute Porphyrias.

I see that our dietary needs are not the same, but some of our supplement needs are the same.

I have an odd condition where I have too much Omega3 in my blood test, that is, so I had eight years ago--and I still cannot handle too much Omega 3 in foods. I am fine with Omega 6 and 9, and do fine on Olive oil and some other oils. I have no explanation for this oddity. Have not talked to a doc who could explain.

I take p-5-p, as I cannot tolerate ordinary B6 more than l5 mg a day, but I find that lately I don't need so much p-5-p. I probably take 25-40 mg a day.

I do take Manganese and zinc in tiny quantities, having learned about this need for porphyrics on a site called HPU, which originates in Holland. But I don't take even a tiny fraction of what you do, Ona. I take about l0 mg Manganese a day and about l5 mg of zinc.

I would have a gross reaction, including spasticity and pain and anxiety, if I took the enormous amounts of B 6 you take. I have had terrible reactions, years ago before dx, to Depakote and Prozac. One half of one prozac pill put me in ER with spasticity, anxiety, and sweat pouring off my hands; the spasticity is a common reaction with me to bad drugs, but the sweat was an unusually bad one.

I am really curious as to the relationship of Pyrolluria to other forms of Porphyria.
We do get emotionally challenged and depressed, and some of us have rages at times, but I do not know of anyone who has the pedophillia you mention...or is admitting it.

Mariel

Ona

06-11-2007, 12:23 AM

June 10, 2007

Hello Mariel. I look forward to sharing information, with you.

. . .I have an odd condition where I have too much Omega3 in my blood test, that is, so I had eight years ago--and I still cannot handle too much Omega 3 in foods. I am fine with Omega 6 and 9, and do fine on Olive oil and some other oils. I have no explanation for this oddity. Have not talked to a doc who could explain.

I, too, have HIGH levels of Omega 3 in my blood. Which, as I understand it, is why I have very LOW levels of Omega 6 (Arachidonic Acid) in my blood test. Over the past two years of my research, I have learned that individuals with Pyroluria tend to have a deficiency in, not only B6 and Zinc, but, also, Omega 6 (Arachidonic Acid).

http://www.alternativementalhealth.com/articles/pfeiffer.htm

The Critical Role of Nutrients in Severe Mental Symptoms

by William Walsh, Ph.D.
Senior Scientist,
Health Research Institute and Pfeiffer Treatment Center
1804 Centre Point Circle, Suite 102
Naperville, IL 60563

http://www.hriptc.org

Pyrrole disorder

A common feature of many behavioral and emotional disorders is pyroluria, detectable as a purple (on testing paper) metabolite in urine called "the mauve factor." Pyroluria is an inborn error of pyrrole chemistry, which results in a dramatic deficiency of zinc, vitamin B-6, and arachidonic acid (an omega-6 fatty acid). As noted earlier, certain pyrroles called kryptopyrroles (literally, "hidden pyrroles") bind with B-6, then zinc to deplete the body’s supply. Common symptoms include explosive temper, mood swings, poor short-term memory, and frequent infections. These patients are easily identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. The decisive laboratory test is analysis for kryptopyrroles (the "mauve factor") in urine. Treatment centers on zinc and B-6 supplements together with omega-6 essential fatty acids.

Most Omega 6 supplements make me ill, such as Evening Primrose oil and Borage oil. Both lower the seizure threashold of my anti-epileptic drugs (AED's). However, the only Omega 6s that my body can handle are from pumpkin seeds and cooked meat, like beef and dark turkey meat.

Nutrition Facts and Analysis for Seeds, pumpkin and squash seed kernels, dried (pepitas)
http://www.nutritiondata.com/facts-C00001-01c20nS.html
Total Omega-3 fatty acids 250 mg
Total Omega-6 fatty acids 28571 mg

Beef, top sirloin, separable lean and fat, trimmed to 1/4" fat, choice, cooked, pan-fried (Sirloin steak, Sirloin strip)
http://www.nutritiondata.com/facts-C00001-01c20td.html
Total Omega-3 fatty acids 1013 mg
Total Omega-6 fatty acids 4145 mg

Turkey, all classes, dark meat, cooked, roasted
http://www.nutritiondata.com/facts-C00001-01c20DL.html
Total Omega-3 fatty acids 238 mg
Total Omega-6 fatty acids 2450 mg

I avoid fish, walnuts, flax seeds, and mustard, like the plague. Everytime I eat these foods I get very ill. I get something what I call "fish-face". My brow furrows, I get nauseous, and feel all bloated and sick. So, I have eliminated these foods from my diet.

. . .I take p-5-p, as I cannot tolerate ordinary B6 more than 15 mg a day, but I find that lately I don't need so much p-5-p. I probably take 25-40 mg a day.

I do take Manganese and zinc in tiny quantities, having learned about this need for porphyrics on a site called HPU, which originates in Holland. But I don't take even a tiny fraction of what you do, Ona. I take about 10 mg Manganese a day and about 15 mg of zinc.

I would have a gross reaction, including spasticity and pain and anxiety, if I took the enormous amounts of B 6 you take. I have had terrible reactions, years ago before dx, to Depakote and Prozac. One half of one prozac pill put me in ER with spasticity, anxiety, and sweat pouring off my hands; the spasticity is a common reaction with me to bad drugs, but the sweat was an unusually bad one.

Mariel, I was wondering. . .
I looked up HCP and it sounds like it's just another name for Pyroluria.

How is your dream-recall, Mariel?

Not being able remember your dreams is a sign of B-6 deficiency.

. . .I am really curious as to the relationship of Pyrolluria to other forms of Porphyria.
We do get emotionally challenged and depressed, and some of us have rages at times, but I do not know of anyone who has the pedophillia you mention...or is admitting it.

Mariel

Possibly, there are others that experience the pedophilia-like symptoms that "I" experience. I have a Pyroluric mentor that is very honest and open, with me. He, too, experiences violent sexual thoughts, at times, as I have. But instead of acting on those thoughts, we retreat and find that we become afraid of our thoughts.

I used to have to isolate myself until it pass (30minutes or so , for me.) But now that I stopped eating, the grain, rice I no longer have such a severe reaction. After eliminating rice from my diet my menstrual-cylce has regulated. :) And with an increase in MEGA doses of B-6 and Zinc I rarely have episodes, unless I go off my supplements. I try avoiding this as much as possible because I will isolate myself and cancel my days appointments.

I am very greatfull for my vitamin supplements! :)

I look forward to hearing from you, Mariel.

Be well.

Respectfully,
Ona

Mariel

06-11-2007, 05:50 PM

I will try pumpkin seeds. Also we have been eating more dark meat lamb. I got too much chicken, which sometimes causes me to start an sort of allergic rejection, so we got onto lamb, and if I eat that more often then sometimes I can eat turkey and chicken.

I have been on the Swank MS diet for nearly 20 years, as that was my first dx. I had neurological damage due to being on drugs which were bad for porphyria (I did not have a diagnosis, and if I ever heard of porphyria it was peripheral nutty stuff like "vampires" and Edgar Allen Poe, or the royal family, which I assumed I could not be related to.

Mariel

06-11-2007, 05:58 PM

Well, I accidentally posted the last, and was not finished, or was I?

It seems my zinc and B6 deficiency must not be as strong as yours, as I do not need the huge amounts. I do find the p-5-p a wonderful addition. My hemo thought so too.

I have no knowledge that most persons with the acute porphyrias, that is HCP, VP, and AIP, are unable to digest or assimilate Omega 3. That is peculiar to me, and evidently also afflicts you. When I was much younger, say 25 years ago, I did take Evening Primrose and that was fine. That is high in B6? But then when I tried it again later, I could not take it.

That is why I will try the pumpkin seeds and that dark meat which I've avoided by being on the Swank diet (but we have started eating it again). The Swank MS diet is low in saturated fat, and avoids dark meat, on the theory that a person with MS has auto-immune attacks on myelin, which is fat. I do have myelin damage. But not bad enough to be unable to walk. It affected my eyes and arms and hands more, and cognition. But those thinigs improved when I was dx'd with Porphyria and got rid of the porphyrogenic drugs.

Depakote and Prozac are porphyrogenic, among my very worst drugs, so I think you and I do not have exactly the same metabolism, or the same mutation. However yes, there seem to be things in common between HCP and Pyroluria.

I had pale violet urine once, but it was not the usual. If I do have a color change, it is to orange or amber, but the most striking change is to flourescence. I often have symptoms of an attack with no noticeable color change.

Mariel

06-11-2007, 06:17 PM

I do not have a gluten problem. I eat rice to control the diarrhea, however, which I get from taking a lot of magnesium. I need a high magnesium dose to keep myoclonus under control.

Ona

06-12-2007, 08:21 AM

I do take Manganese and zinc in tiny quantities, having learned about this need for porphyrics on a site called HPU, which originates in Holland.

Is this the Web site you found, Mariel?

http://www.hputest.nl/english.htm

I am really curious as to the relationship of Pyrolluria to other forms of Porphyria.
We do get emotionally challenged and depressed, and some of us have rages at times, but I do not know of anyone who has the pedophillia you mention...or is admitting it.

Mariel

Look what I found, Mariel! A really GREAT link to a forum about HPU, located out of Germany and it is written "mostly" in English. Lots of neat information and links, too.

HPU knowledge?
http://www.ht-mb.de/forum/showthread.php?t=1009571

Here's just a sample of the WEALTH of knowledge contained in this Web site:

Question 01: What's the difference between the HPU-test® , the total pyrrol test and the kryptopyrrol test? What are the reasons to prefer an HPU-test above other tests?

http://www.hputest.nl/evraagvdweek.htm

Answer: Only the HPU-Ruin test® (with the registered trade mark sign ®) is the original HPU-test. Only in this test the ‘hydroxy-hemopyrrol pyridoxal-5-phosphate zinc chelate complex’ is measured. In the USA Dr. Taipan Audhya performs a test on hydroxy-hemopyrrol in the urine. This test only measures the hydroxy-hemopyrrol. From recent research it is clear that there is a good correlation between this test and the HPU-test®.

Other tests that resemble the HPU-test are the total pyrrol test or the krypto-pyrroltest.

Although sometimes misleading designations like ‘OH-Hemopyrrol’ are used, all these test in fact are total pyrrol test in which pyrroles are determinated spectrophotometrically with the Ehrlich reagens.

These tests normally are less expensive, because the determination of total pyrrols is much easier. The KEAC-Kryptopyrrol test is € 7,50 cheaper and the total pyrrol test even more. In the USA this difference is even much more, because the hydroxyhemopyrrol test is more expensive.

There are some reasons why one would prefer the HPU-urine test® above other tests. Pyrrols and other resembling compounds that can be formed from porphyrins quite easily can react with Ehrlich reagens too. Porphyrines are intermediates from the haem synthesis and can also be found in the urine of healthy persons. The use of certain drugs, food or stimulants does increase the amount of porphyrines and therefore the result of the total pyrrol test.

‘Hydroxyhemopyrrol pyridoxal-5-phosphate zinc chelate (HPL)’ is a quite specific compound which, as far as known nowadays, can only be formed from a disturbance in the haem synthesis or by oxidation of arachidonic acid via tissue adducts.

When you want to perform a KPU (kryptopyrrol test) because of financial or other reasons, this is no problem. Just ask for this test. Also in this case we will support you with our knowledge.

Enjoy, everyone, and be well.

Respectfully, Ona :)

Ona

06-12-2007, 11:10 AM

Welcome to the forum, Era.

I had a 15+ year illness that was ultimately resolved, but it was a long hard grind. I'm now wondering if there is a causal relationship: could gluten intolerance leading to thyroid failure, in turn lead to pyroluria?

Let me see if I have this right. . .

From what I have read in the URL of your medical history, you became "aware" of the gluten and how much you ate of it in your 50s.

I believe the question you are asking will require some more thought, on my part. It's sort of like, "Which came first, the chicken or the egg?" senario. ;) An intreguing question!

"Could gluten intolerance leading to thyroid failure, in turn lead to pyroluria?"
I would very much like to understand your line of thought, era.

:confused: How might gluten intolerance lead to thyroid failure?
I have a pyroluric mentor that is, also, very sensitive to wheat, yet does NOT have celiac disease. I, on the otherhand, do not know if I have celiac disease or this weird relationship to not being able to eat ANY GRAINS, as my birthfather was diagnosed as a FULL-BLOWN CELIAC and I was never tested until AFTER I stopped eating wheat and gluten, of course giving a NEGATIVE result.

For me, if I eat any type of grain, I get cerebral allergies. Not much fun and it takes a good 3 to 4 days for the TOXIN to leave my body's system and return to a calm, undisturbed, healthy state of mind. To get a "possible" possitive test result, I would have had to eat a piece of wheat bread, every day, for 6 months! I already knew I felt SO MUCH better, not DEPRESSED or GLOOMY or INDIFFERENT or ISOLATING myself from the outside world, so there was no need to put myself through 6 months of torcher, to find out what I already knew. . . I shouldn't eat ANY wheat! Turns out, ALL GRAINS! As I eliminated one grain after the other, I began to feel better and better! :D

Since the elimination of grains from my diet, I have had more time to research and be productive and really FOCUS on what I would like to get accomplished. I have learned--from the Internet--that B6 and Zinc are not only depleted in large quatities from individuals with Pyroluria, but from those with Celiac Disease, too.

:o Might THAT be the begining to figuring out this "domino" effect?

Gluten Intolerance → Thyroid Failure → Pyroluria

I put the history of this illness up at the URL below. If anyone cares to read it, tell me what you think. I have no reason whatsoever to believe that I had gluten intolerance and pyroluria when I was young.

ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm

Great Medical History, era! I really enjoyed reading about your insights and struggles, very similar to what I went through. Thank you for sharing your helpful advise and words of wisdom. You are SO right about how important it is to find doctors that believe in YOU. The doctor that is willing to "look deeper and further" into the actual "root cause" of the symptoms, instead of just settling for a doctor that has given up on the individual and starts "masking" the symptoms with heavy medications instead of TREATING the deficiencies and REMOVING the allergens, is essential to a patients recovery.

As for when I became affected by gluten?
I didn't realize "I" was seriously affected by gluten, ALL GRAINS, for that matter, until I was in my mid. twenties. However, looking back, I probably was having a minor reaction, to some extent.

Whenever I would come home from middle school and high school, I would go straight to my room, isolate myself, shut the lights out, and sleep until dinner time. It was easier than the alternative, which was staying awake for the next 3 hours, depressed, sad, 'bouts of temper tantrums, and finally complete and total indifference. I was rather embarassed of the way I felt and behaved, at that time, and didn't want anyone to see me. Maybe it had something to do with my, now diagnosed, Hypoglycemia? :rolleyes:

Anyway, all for now. Be well, all!

Respectfully, Ona :)

Mariel

06-12-2007, 08:48 PM

I think that is the HPU site, Ona.

I didn't reread the whole article, but it must be, having come from Holland and translated into English and other languages.

Several of us from the porph lists read this material and we agreed that the symptoms matched ours. However, none of us find that simply having B6 or p-5-p, zinc, and manganese is a cure of our symptoms. These help but do not fix everything by any means. But those of us who read this article are all older porphs who suffered from years of misdiagnosis and bad drugs and environmental toxicity, so we would not be as blessed as the children and young people diagnosed in this article.

I am eating sunflower seeds because I could not find pumpkin seeds at the local market. When I go to town on Friday or Saturday I will get some pumpkin seeds at the health store. I do not know if sunflower seeds are high in Omega 6.

Mariel

Ona

06-13-2007, 12:02 AM

I am eating sunflower seeds because I could not find pumpkin seeds at the local market. When I go to town on Friday or Saturday I will get some pumpkin seeds at the health store. I do not know if sunflower seeds are high in Omega 6.

Mariel

Hi Mariel!

Here is a really great search engine, that I use, to find out the nutritional information of certain foods, like pumpkin seeds and sunflower seeds: NutritionData: Nutrition Facts & Calorie Counter http://www.nutritiondata.com/

SEEDS, PUMPKIN & SQUASH SEED KERNELS, ROASTED, W/O SALT http://www.nutritiondata.com/facts-C00001-01c20nT.html
Serving size: 100 grams 1 ounce (28g) 1 cup (227g)
Total Omega-3 fatty acids 377 mg
Total Omega-6 fatty acids 43175 mg
Omega-3 : Omega-6 ratio 1 : 114

vs.

SEEDS, SUNFLOWER SEED KERNALS, DRY ROASTED, W/O SALT http://www.nutritiondata.com/facts-C00001-01c20nd.html
Serving size: 100 grams 1 ounce (28g) 1 cup, hulled (128g)
Total Omega-3 fatty acids 88.3 mg
Total Omega-6 fatty acids 41965 mg
Omega-3 : Omega-6 ratio 1 : 475

As you can see, Mariel, Sunflower Seeds have over 400% more Omega-6, than Pumpkin Seeds! Thanks for clearing that up, for me. I'll stick to Sunflower Seeds, from now on! :)

Hope this has helped!

Respectfully, Ona :)

Mariel

06-13-2007, 01:27 PM

Ona, I feel better today! The sunflower seeds are great. My first thing noticed that I had no indigestion. That is a hurdle in itself, because many Omega 3 high foods cause indigestion. A basic hurdle! Then this morning I am much more relaxed and less spastic (stiff). Thanks for looking up that on the sunflower seeds ratio of Omega 6/3. They sure taste good. I wonder if one can get too many, because I really like them. Maybe they just make us fat?

This is a real curious thing, isn't it?

Mariel

06-21-2007, 04:19 PM

I quit trying the pumpkin seeds as I got sick, probably from environmental poisons in offices, maybe not from food, but I'm back on my tried and true diet.
I will continue to eat pumpkin seeds but not in high quantities.

I got poisoned by an infusion nurse giving me a lidocaine shot to numb the arm. She should have known I could not have it, as I had told another nurse no on that three weeks earlier in the same infusion room. So I am through with trying to ever treat porphyria in this venue. I get by on my own or not at all.

Mariel

jcc

06-21-2007, 05:47 PM

How might gluten intolerance lead to thyroid failure?

I can answer the part about gluten sensitivity leading to autoimmune thyroid disease. There is a well established association between celiac disease and other autoimmune disease, in particular, autoimmune thyroid disease and autoimmune diabetes.

Here is one study which discusses this concept. Research traveling down this road is ongoing, and you will find interesting studies about gluten and casein sensitivity in a wide variety of autoimmune diseases. Check out The Gluten File and open the links about autoimmune disease and zonulin.

There is, however, growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease. This concept implies that the autoimmune response can be theoretically stopped and perhaps reversed if the interplay between autoimmune predisposing genes and trigger(s) is prevented or eliminated by a prompt diagnosis and treatment.
Systemic autoimmune disorders in celiac disease (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17053448&query_hl=8&itool=pubmed_docsum).
PMID: 17053448 Nov 2006

Here, someone asks a similar question at another site about a causal relationship between celiac disease and thyroid disease, and here is the response by a celiac expert:

DR. FASANO: There is a clear association between celiac disease and other autoimmune diseases, including autoimmune thyroiditis (also calles Hashimoto's disease). As far as we know at this point, it is likely that the autoimmune thyroiditis can be a complication of untreated celiac disease. A treatment with a gluten free diet will stop the autoimmune process targeting the thyroid but will not be able to "cure" the damage already induced on the gland.
http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=82&coded_category=CD%20and%20Other%20Issues&coded_category_id=2

Here is a page of The Gluten File devoted to Thyroid disease as it is associated with celiac disease. As mentioned previously, check out some of other pages too.
http://jccglutenfree.googlepages.com/autoimmunethyroiddisease

What they have found is those with celiac disease have too much zonulin, a protein responsible for regulation of the intestinal barrier and the blood brain barrier. The leaky gut lets those proteins 'out' where predisposed individuals may react... and this may lead to other autoimmune disease. The research on this is all ongoing, but it may explain why some people have "brain symptoms' if the BBB is 'leaky' due to too much zonulin. They have found patients with MS and Diabetes also have too much zonulin, and both gluten and casein have been implicated by some as playing a role in MS and diabetes. There is a zonulin blocking drug in clinical trials, and if successful, it might not only be used to treat celiac disease, but diabetes, MS, and possibly more.

What I'd like to know is HOW pyroluria might fit.

My daughters do not actually have celiac disease or the genes for celiac disease, but they are gluten sensitive (with positive antigliadin IgG antibodies). Only the daughter who was heavily symptomatic with pyroluria symptoms, was tested for pyroluria, and had a positive result.

The only connecter I have found is "oxidative stress"???
http://brain.hastypastry.net/forums/showpost.php?p=116335&postcount=2

I saw a link on a recent post on the GS/CD board to something about Hashimoto's and Pyroluria, but the link was broken. Is there a known connection between Hashimoto's and Pyroluria? That I would like to know! My family has a serious! family history of Hashimotos. Myself and both sisters, my father and 5 out of 6 of his siblings, his father, and many many cousins.

My lay person opinion is that anything that disrupts the integrity of the gut lining, whether damage via gluten or casein or other food sensitivity, overgrowth of yeast, h. pylori, parasite, rotavirus, other virus, etc. .... can ultimately lead to the development of autoimmune disease, for the reasons outlined above [growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease. ] I don't think there is a single answer, but I think food sensitivity is ONE of many possible factors that can lead to autoimmune disease.

Did I get way off base?

I would just love to know Pyroluria fits with my family. Oddly, we have the autoimmune disease family history on my Dad's side, and the alcoholism/depression/mood disorder family history on my mom's side. Both can be associated with gluten sensitivity~

Cara

era

08-16-2007, 05:51 PM

I've been seeing a Certified Nutritionist who works in my doc's office. She told me at my last appointment that they are currently observing a small group of patients who clearly have gluten enteropathy, AND who have developed some of the symptoms of pyroluria, and have a weak or strong result on the pyroluria test.

Her conclusion is that these patients have what she is terming "situational pyroluria": gluten->intestinal damage->malabsorption->deficiencies manifesting as pyroluria. In other words, the Conventional Medical Wisdom that says pyroluria is always genetic, is wrong.

I've gone dairy-free on top of gluten-free, and added additional supplements, in an attempt to further heal the damage done by gluten. If there really is such a thing as situational pyroluria, then I'll be reporting back here in a year or so that I no longer have to take the megadose pyroluria formula (B6,Zn,etc.) that I've been on for the past 6 months.

jcc

08-17-2007, 01:14 AM

wwebby

08-27-2007, 01:04 PM

Ona

08-27-2007, 07:18 PM

Hi,

I've tried a couple of times to start a pyroluria protocol (I was tested and my score was above 20) but every time I do, the B6 makes me so anxious I feel like I'm losing my mind! Help! The B6 makes me feel worse! What should I do? Am I taking too much? I take a 250mg tablet. Is that too much? From what I've read, 250 might not even be enough! I have tried both regular B6 and P5P.

Thanks,

Laura

I will get back to you, shortly, Laura. I am checking with my Pyroluric mentor. He's been doing his protocal for 30 years, now. We'll see what we can do, for you. If you have any other symptoms, at all, please let your doctors and this pyroluria community forum know. If you don't mind, I have a few questions, for you:

1. Do you have trouble recalling your dreams? (B-6 Deficiency)

2. Do you have frequent nightmares? (B-6 Deficiency)

3. Are your dreams so vivid that you sometimes think they are memories? (Too much B-6)

Hope this has helped. :)

I take between 1,000mg and 1,200mg of B6 (pyridoxine HCl) daily, depending on dream recall.
I take 200mg B6 (P5P: Pyridoxyl-5-Phospate) daily. I only adjust the pyridoxine HCl. The P5P stays the same, for me.

Talk to you soon...

Respectfully, Ona

p.s. Here's my pyroluric mentor's reply, to you, Laura:

B-6 is the ‘calming’vitamin. She’s got to take it in the morning WITH food. I’d like to know more of her symptoms, what they are, when they occur, and what her current protocol is, dear. Looking forward to seeing you tonight!

BD

wwebby

08-28-2007, 09:31 PM

Ona

08-29-2007, 02:38 AM

. . . I have been diagnosed with Bipolar, Hashimoto's Thyroiditis, Gluten Intolerance, and possible Simple Partial Seizures. My symptoms are worse around my cycle. I didn't feel as much anxiety today; I took 250 mg of B6 with breakfast and my cycle is ending, so that might have something to do with the excessive anxiety the other day. Also, I just rid my diet of gluten, caffeine, and aspartame all at once, so maybe I was having withdrawal symptoms. But in general, I don't really know how much B6, zinc, and EPO to take.

Yes, this sounds very similar to the symptoms of Pyroluria that "I" have experienced, in the past.

What has worked, for me, is taking things one step at a time, Laura. When altering my routine, food, vitamins, meds, excercise, "whatever".....I only change one thing at a time. By taking things slowly, like this, I am able to see what symptoms, if any, occur. I keep a seperate journal, I call it my "medical" journal, for my day-to-day symptoms (seizures, moods, period, allergies, attacks, etc) and changes (foods, medications, vitamins, exercise, sleep routine, work schedule, etc) in my protocal. Then, when I have the time, I analyze the past week or two, to see if I can figure out why my current symptoms are occuring. Sometimes, I see a pattern, right away! :D Other times, I still need to gather more information on what my body is trying to tell me. :rolleyes:

This method is a bit of "trial and error" and takes a little time, but it is absolutely *key* to figuring this condition out. I learned this method, from Kathleen DesMaisons, Ph.D, who wrote the follwoing books:

"Potatoes not Prozac", written by Kathleen DesMaisons, Ph.D.
"The Sugar Addict's Total Recovery Program", written by Kathleen DesMaisons, Ph.D.
...The above two books are a *fascinating* read. And I *highly* recommend them to anyone struggling with possible food allergens, especially related to how a person's mood is affected by what he or she eats. :)

"Your Body Speaks: The Sugar Addict's Food Diary", written by Kathleen DesMaisons, Ph.D.
...This is a *great* journal. Very *inspiring* and it taught me how to *create* my "own" food/mood journal. Also, a *wonderful* tool for those working with juggling symptoms that may be provoked by "what" and "when" he or she is consuming. GREAT journal! :) :) :)

If anyone is interested in learning more about her work, the follwoing are Web sites to Dr. Kathleen DesMaisons' home page and Radiant Recovery Store:
Radiant Recovery Web site: http://www.radiantrecovery.com/
Radiant Recovery Store: http://www.radiantrecoverystore.com/stbooks.html

wwebby

08-29-2007, 10:29 AM

Thanks Ona. My mom actually turned me on to Radiant Recovery so I'll have to check it out again.

I can't tell you how great it is to know you're out there. I never thought there were other people who had all the same health "stuff" as I have. I'd love to know more about how all these conditions are related...We should volunteer ourselves so someone can do a case study on us!

Take care,

Laura:)

Ona

08-29-2007, 04:16 PM

...We should volunteer ourselves so someone can do a case study on us!

Take care,

Laura:)

Laura,

My pyroluric mentor and I will be discussing your case, later tonight. Thank you very much, for introducing yourself to us and this community forum. We can, all, learn so much from one another. :)

By the way, I am in the process of forming a *fantastic* team of doctors that specialize in Porphyria. Currently they consist of a hematologist, a neurologist, a psychiatrist, and a general practitioner.

My pyroluric mentor is actually considering seeing my doctors, now. My "team" of doctors and I are learning together, as I point them in the direction of what tests to be done. They are now learning how to draw the specific blood tests for vitamin deficiency/toxicity and getting used to the "process" of these rarely requested tests. This is a VERY exciting time, for me, in my life. I am finally able to *live*. ;)

with UTMOST Respect and Gratitude, Ona

Together, we will make a difference! :) :) :)

wwebby

08-30-2007, 09:32 PM

Ona

09-02-2007, 09:20 PM

Hi Ona,

I upped the B6 to 500 mg today and didn't get the anxiety. In fact, I feel much better. It's been about a week of starting the nutrients for pyroluria. I can tell already that this is really going to help. How much zinc and how much EPO? I've been taking 60 mg of zinc and 1000 mg of EPO. I read also that manganese should be included. Do you take that? Oh, and I did dream last night, but I lost memory of it shortly after I woke up.

I'll be interested to hear what your "mentor" says!

Take care,

Laura

Hi Laura. My pyroluric mentor and I are so glad to hear that you are starting to *feel* better. :) :) :)

From our research, BD and I have found that manganese is highly recommended in the Pyroluric protocal.

On the matter of your dreams, the fact that you "did" dream is a good sign.
Whether or not you "recall" your dreams, still shows that the B-6 is working, for your individual body's needs! ;)

PYROLRUIA PROTOCAL QUESTIONS:

1. What are you taking for you Hashimoto's Thyroditis?

2. What is your age, height, and weight?

3. Do you have any white lines or white spots or transverse ridges/dents on your finger nails? (We reserve our oppinion, until receiving a response.)

4. What nutrients are you taking?

5. Are you a vegetarian? What foods are you eating?

From there, we will, both, get back to you with our oppion.

Hope all is well, Laura!

Respectfully, Ona :) & BD :)

era

09-06-2007, 10:27 PM

Thanks. Here are my symptoms: Depression-Feeling like I'm walking around in a cloud, under a bell jar with lack of interest, boredom, everything feels dead. Anxiety-Ruminating and ruminating over strange notions I get in my head and being unable to stop. Feeling like I'm "going crazy" and have no control over my brain. I've also gotten more reclusive as I've gotten older, which makes me sad and has caused a decrease in my self-confidence. I used to be so sociable. When I'm really feeling sick, I have absolutely no tolerance for stress, even little things. I put a lot of things off because I think they are too stressful. Lack of energy. I have been diagnosed with Bipolar, Hashimoto's Thyroiditis, Gluten Intolerance, and possible Simple Partial Seizures. My symptoms are worse around my cycle. I didn't feel as much anxiety today; I took 250 mg of B6 with breakfast and my cycle is ending, so that might have something to do with the excessive anxiety the other day. Also, I just rid my diet of gluten, caffeine, and aspartame all at once, so maybe I was having withdrawal symptoms. But in general, I don't really know how much B6, zinc, and EPO to take.

Laura,

Given that you have HAIT: keep in mind that many autoimmune disorders can be CAUSED by gluten. I suspect that other foods (esp. the Big 4: gluten, dairy, soy, corn) can also lead to autoimmune problems. You should at the very minimum get tested to see if your body has developed antibodies to gliadin (the troublesome substance in gluten).

It is quite possible that your dietary changes will make you feel better because getting rid of HAIT often gets rid of anxiety. However it will take a number of months.

If you can wade thru it, this history of my illness may give you some ideas:

ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm

As far as pyroluria, I've used an all-in-one compound from my doc. Each capsule contains: zinc picolinate @ 12.5mg, manganese citrate @ 1.67mg, P5P @ 16.7mg, B6 @ 83.3mg, niacinamide @ 166mg, pantothenic acid @ 166mg, magnesium citrate @ 67mg. I have taken up to 6 of these daily, but am now taking just 2 daily, with a little extra B6 at bedtime. The all-in-one approach is convenient, but the amount of pantothenic acid in this combo is so high, that it can disturb sleep. (Ray Sahelian recommends "normal" people not take more than 250mg of p.a. daily because it is an activator.) I also take one capsule of the Thorne trace minerals formula daily.

In addition to getting off gluten in 2003, I also am off dairy as of recently. This seems to be a help in lessening the malabsorption problem I've had.

era

12-15-2007, 10:28 PM

Thanks for the post! I wish I knew what the relationship is between pyroluria and gluten sensitivity. They do seem to go together.... but far as I can tell it could be a chicken egg scenario.

My daughter is not compliant with a gluten free diet, nor very consistent with her nutritional supplements. When she is having symptoms of pyroluria, we know she needs to get serious about her vitamins.

I look forward to hearing how the diet goes for you, and whether you notice any changes with your pyroluria control.

Cara

Cara,

I've been on a program to heal gut damage now for almost 6 months, and the progress I've made is pretty astounding.

It eventually became clear that I didn't have a genetic case of
pyroluria at all. What I had was gluten enteropathy, which leads to
malabsorption and multiple vitamin/mineral deficiencies. Because I was
unable to absorb many key nutrients, esp. B6, manufacture of red blood
cells was throwing pyrroles into my bloodstream. Lack of B6, zinc,
and other nutrients was starving my nervous system.

Thus, my conclusion is this: the test for pyroluria, in people not
having a gentic tendency to that disorder, is one method to diagnose
malabsorption. And, if you have malabsorption, you probably have
enteropathy, most likely due to one or more food allergies.

Now that my enteropathy is pretty much healed up, I no longer have
to take vitamin/mineral megadoses to attenuate my anxiety and feel
decent. My progress has allowed me to get my thyroid supplementation
(my thyroid was mostly destroyed by gluten-induced Hashimoto's) to
a fully therapeutic level.

sededsPhoreno

12-25-2007, 02:31 AM

Thank to you for the help me!

Sam

__________________________________________________ _______
investment (http://hyip-catalog.com)

lizbeth76

03-01-2008, 07:06 AM

Hello,
Not sure if there is anyone left on this thread but here goes.
I show many signs/symptoms of the deficiencies that result from pyroluria including:
Anxiety (including trichotillomania)
Depression
Food allergies (including food dye)
eczema
Acne
dandruff
More alertness at night.
Intolerance to omega 3s

This has come as a major revelation to me as these things have made my life miserable over the last few years. However, I won't be able to get tested until I get back from overseas in a few weeks. Is it Ok to just start supplementing with zinc and B6 in the meantime and if so - what dosages would I need. I think I read somewhere 100mg for zinc but what about B6?? Any help much appreciated and fingers crossed that this is the answer I have been hoping for.
Liz

annelb

03-01-2008, 05:42 PM

I do not know much about pyroluria - I know more about gluten sensitivity. If you start B6 is is better if you get it as P-5-P. Here is a page about B6 that may help. http://jccglutenfree.googlepages.com/vitaminb6

Anne

jcc

03-04-2008, 03:45 PM

Some people ultimately may require levels of zinc that high, but too much zinc can also be a problem when it comes to zinc/copper balance.

Particularly if you are supplementing on your own, without monitoring, I personally would not go above 50mg of zinc daily, before bedtime. As for B6, I'd start with 50mg twice daily (morning, afternoon). These are relatively modest doses for treatment of pyroluria, but until you can be tested and check things out with a doctor... it is probably a good starting point.

Extra vitamin A, C, E, and magnesium are important, too.

My daughter started supplementing with B6 years before she tested positive for pyroluria... and she responded remarkably (symptoms included mood swings, seizures, sleep problems). I hope it makes a difference for you. Finding a doctor who knows much about it can be a challenge, but awareness seems to be growing.

Good luck!

Cara

jcc

03-04-2008, 03:47 PM

Cara,

I've been on a program to heal gut damage now for almost 6 months, and the progress I've made is pretty astounding.

It eventually became clear that I didn't have a genetic case of
pyroluria at all. What I had was gluten enteropathy, which leads to
malabsorption and multiple vitamin/mineral deficiencies. Because I was
unable to absorb many key nutrients, esp. B6, manufacture of red blood
cells was throwing pyrroles into my bloodstream. Lack of B6, zinc,
and other nutrients was starving my nervous system.

Thus, my conclusion is this: the test for pyroluria, in people not
having a gentic tendency to that disorder, is one method to diagnose
malabsorption. And, if you have malabsorption, you probably have
enteropathy, most likely due to one or more food allergies.

Now that my enteropathy is pretty much healed up, I no longer have
to take vitamin/mineral megadoses to attenuate my anxiety and feel
decent. My progress has allowed me to get my thyroid supplementation
(my thyroid was mostly destroyed by gluten-induced Hashimoto's) to
a fully therapeutic level.

I found this interesting.... perhaps the pyroluria/gluten link.... what comes first? The chicken or the egg?

Transglutaminase and the pathogenesis of coeliac disease. (http://www.ncbi.nlm.nih.gov/pubmed/18249302?dopt=AbstractPlus)

In 1997, a German group demonstrated that the antigen of the biomarker EMA (endomysial antibodies) in coeliac disease is a calcium-dependent thiol enzyme, transglutaminase type 2 (TG2). This most important discovery opened up an exciting field of research aimed at a better understanding of the pathogenesis of coeliac disease, a T-cell-driven autoimmune disorder with a prevalence of about 1%. The accidental activation of TG2, possibly caused by a stress-induced local deficiency of zinc in the intestinal wall, might play a key role where the enzyme catalyzes an atypical deamidation of specific glutamine residues of food gliadins. The genetic contribution is HLA DQ2 or DQ8, which can form a complex with the TG2-modified gliadin residues, resulting in an immune response with the formation of antibodies against both gliadin and the enzyme. Indeed, the immunopathogenesis of coeliac disease can now be recognized partly at the molecular level. Progress has already improved the opportunities for laboratory diagnostics and, hopefully, new ways of treating and preventing coeliac disease will become available. These exciting developments might stimulate research within other fields of autoimmune disorders. With its focus on TG2, this review highlights some of the intriguing mechanisms of the pathogenesis of coeliac disease, such as the structure of the neo-antigen, the involvement of calcium and zinc, and the effects of coeliac antibodies on TG2 activity. Moreover, the many pitfalls due to dubious laboratory practice are addressed, as is the potential when a fundamental biological mechanism is understood at the molecular level.

PMID: 18249302

adsmithy

03-25-2008, 09:56 PM

When people are saying they are intollerant to Omega 3, what specific problems are they experiencing?

jcc

04-04-2008, 10:25 PM

Discerning the Mauve Factor, Part 1.

McGinnis WR (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22McGinnis%20WR%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Audhya T (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Audhya%20T%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Walsh WJ (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Walsh%20WJ%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Jackson JA (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Jackson%20JA%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), McLaren-Howard J (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22McLaren-Howard%20J%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Lewis A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Lewis%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Lauda PH (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Lauda%20PH%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Bibus DM (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Bibus%20DM%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Jurnak F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Jurnak%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Lietha R (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Lietha%20R%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Hoffer A (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Hoffer%20A%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).

Oxidative Stress in Autism Study, Auckland, New Zealand.
"Mauve Factor" was once mistaken for kryptopyrrole but is the hydroxylactam of hemopyrrole, hydroxyhemopyrrolin-2-one (HPL). Treatment with nutrients--particularly vitamin B6 and zinc--reduces urinary excretion of HPL and improves diverse neurobehavioral symptoms in subjects with elevated urinary HPL. Heightened HPL excretion classically associates with emotional stress, which in turn is known to associate with oxidative stress. For this review, markers for nutritional status and for oxidative stress were examined in relationship to urinary HPL. In cohorts with mixed diagnoses, 24-hour urinary HPL correlated negatively with vitamin B6 activity and zinc concentration in red cells (P < .0001). Above-normal HPL excretion corresponded to subnormal vitamin B6 activity and subnormal zinc with remarkable consistency. HPL correlated inversely with plasma glutathione and red-cell catalase, and correlated directly with plasma nitric oxide (P < .0001). Thus, besides implying proportionate needs for vitamin B6 and zinc, HPL is a promising biomarker for oxidative stress. HPL is known to cause non-erythroid heme depression, which lowers zinc, increases nitric oxide, and increases oxidative stress. Administration of prednisone reportedly provoked HPL excretion in animals. Since adrenocorticoid (and catecholamine) stress hormones mediate intestinal permeability, urinary HPL examined in relationship to urinary indicans, presumptive marker for intestinal permeability. Urinary HPL associated with higher levels of indicans (P < .0001). Antibiotics reportedly reduce HPL in urine, suggesting an enterobic role in production. Potentially, gut is a reservoir for HPL or its precursor, and stress-related changes in intestinal permeability mediate systemic and urinary concentrations.
PMID: 18383989 [PubMed - in process]

andy1618

04-08-2008, 06:00 PM

I have been using vitamin B6 (Pyridoxine HCL) to control my seizures for over 37 years. AEDs have never had any positive effects on my seizures.

You can read my story here: http://www.epilepsyforum.org.uk/viewtopic.php?t=14802&highlight=vitamin

Max'sbrain

04-27-2008, 02:06 PM

Hi my name is Max. I've been in an out the last two years of mental hospitals starting with the diagnosis of bi polar into schizophrenia psycosis. I later found out most of the mental symptoms I was experiencing was caused by the medication and went off the meds and recovered.....yet, not completley. My aunt has Porphyria C.T which is related to pyroluria which I have been tested for and have a level of 41. Currently I'm doing a Urine test to test for porphyria but I hear pyroluria and porphyria go hand in hand.

My mental symtoms are completley normal except I get these strange acute short lived attacks where my body wreathes in neuroligical pain from head to to. Neausia, Vomiting (sometimes). These attacks are extremley painful and I get into rages where I remove myself from people. It's kinda like my brain is going crazy for a very very short period of time. It can take a day or two to recover though because its that painful.

I also Have strange eye disturbances 24/7. Pschyiatrists thought they were hallucinations and eventually took all diagnosis back when I was off meds and was able to describe them. I see floaters everywhere the second I walk or look at sunlight. Sunlight really hurts my eyes too. This is worsened during attacks. Fuzziness, Blurryness, sometimes on and off. If I have dim light with no sun I see somewhat normal and feel better in the dark.

QUESTION: I'm thinking I might have Porphyria like my aunt. I know I have high Pyroluria with goes hand in hand in many cases. I'm starting to take P5P hoping it wiill do something. But my eye problmes with the eye doctors say are all neurological bother me alot. Is there any vitamins I can take to rid myself of floaters? Any treatment? And as far as the prickly burning nerves all over my body? How do I get rid of that? If anyone has helpful information please post! Thanks.

mrsdoubtfyre

04-28-2008, 10:18 AM

1) you need a B12 test, and/or MMA to go with it.
Low B12 leads to many neuro symptoms including floaters.
Any result of the B12 below 500 should be treated. In this country 200 is considered normal, but in Japan, anything below 500 is considered abnormal (we are far behind in this).
http://jccglutenfree.googlepages.com/b12deficiency

2) pyroluria also needs zinc, and you don't mention that.

3) high dose P5P and zinc should be monitored by a doctor. Zinc can lower copper levels, and a zinc/copper ratio needs to be done periodically.

4) You should explore going gluten free--- being affected by the gluten peptide can cause all sorts of damage to the nervous system.
You can have tests done before you start the diet...to see if you have antibodies.
You need to read this very comprehensive site:
http://jccglutenfree.googlepages.com/

If you are gluten sensitive...you may have OTHER nutritional defects.
EFAs (Omega-3 fatty acids), calcium, folic acid, Vit D deficiency, and many others. Damage to the small intestine leads to malabsorption of nutrients.

So you have some homework to do. Don't expect your doctors to do it for you either!

Good luck!

potatobug72

05-01-2008, 10:19 AM

this is a wonderful thread!

My doc had wanted me to have the tests done for pylouria, but I never did the test....I do have bipolar disorder and severe colitis and know I do poorly with many foods...I also have dark thoughts due to hormonal changes,i feel I need to get my diet under control in order to help with my symptoms.I was recently hospitalized for a mixed episode.i so want to get my hormones and other such under control- i also have hypothyroidism.i wondered if I could have other things underlying everything else.I started a multivitamin called ocuvite, and take fish oils,i wonder can you take fish oils and flax? I believe i have seen a supplement of fish flax and brage oils...How do these work if anyone knows?I am going to take a closer look at this section for I feel i would benefit greatly from the right supplements and I think Ill have my doc write that script for the tests again-

thanks for this thread

Patty

lizbeth76

07-11-2008, 06:49 AM

Hi - I was doing really well after being diagnosed with pyroluria in April and taking the high dose zinc and P-5-p. However lately I have had 2 very bad flare-ups of my eczema and have been racking my brain to figure out whats causing it. Anyway I just realized my favorite yogurt now has DHA in the form of algal oil added. Could this be making my eczema worse despite me sticking religiously to my supplements? My anxiety has got worse too but I have been weaning myself off my anti-depressants.

Any input greatly appreciated.
Liz

Proton Soup

07-12-2008, 01:18 AM

liz, i would doubt it is the DHA itself. if anything, DHA tends to reduce inflammation.

and as for anxiety, most of the stuff i've read regarding omega 3 oils is only positive with respect to mental health. it's certainly not a cure for things like depression or anorexia, but it generally improves people's scores when used as an adjunct therapy.

lizbeth76

07-12-2008, 06:08 AM

Are you talking generally or in cases where eczema and anxiety are induced by pyroluria? My understanding was that pyrolurics needed more omega 6s.

andy1618

07-12-2008, 09:47 AM

I have been using Pyridoxine HCL (vitamin B6) for over 37 years to control my seizures.

Vitamin B6 saved my life.

My seizure medication now consists of all eight B vitamins only.

AEDs have never had any positive effects on the control of my seizures.

Without my B vitamins (mainly B6) I would either be mentally impared due to Status Epilepticus or worse.

Here is my story with some useful links:

http://nse-forum2.jamkit.com/viewtopic.php?t=14802

DO NOT ALTER ANY MEDICATION WITHOUT YOU DOCTOR'S CONSENT.

Andrew

Proton Soup

07-12-2008, 05:11 PM

Are you talking generally or in cases where eczema and anxiety are induced by pyroluria? My understanding was that pyrolurics needed more omega 6s.

generally. omega 3 and omega 6 do compete for the same enzymes, tho, with omega 6 favoring the production of things like arachidonic acid, i think (can't find that darn paper since switching PCs). thing is, you do need some DHA because it is an essential fatty acid, and it's hard to imagine getting a large amount from yogurt, even supplemented. getting an abundance of omega 6 is easy unless you subsist on salmon and veggies. there are many who think our modern omega 6 rich diet is the cause of much inflammation and disease.

lizbeth76

07-13-2008, 04:06 AM

unityemissions

10-17-2008, 10:50 PM

I also Have strange eye disturbances 24/7. Pschyiatrists thought they were hallucinations and eventually took all diagnosis back when I was off meds and was able to describe them. I see floaters everywhere the second I walk or look at sunlight. Sunlight really hurts my eyes too. This is worsened during attacks. Fuzziness, Blurryness, sometimes on and off. If I have dim light with no sun I see somewhat normal and feel better in the dark.

QUESTION: I'm thinking I might have Porphyria like my aunt. I know I have high Pyroluria with goes hand in hand in many cases. I'm starting to take P5P hoping it wiill do something. But my eye problmes with the eye doctors say are all neurological bother me alot. Is there any vitamins I can take to rid myself of floaters? Any treatment? And as far as the prickly burning nerves all over my body? How do I get rid of that? If anyone has helpful information please post! Thanks.

I had identical symptoms. Tons of floaters, high sensitivity not only to light but to sounds and touch. Eyes would blur sporadically and I even had migranes and light hallucinations. Got really delusional, paranoid and thought that I was being divinely inspired by this light phenomena! Probably had more to do with my low-histamine levels, though. My pyrrole count was 57! Zinc man, zinc. It will clear this no problem. I take many vitamins, as I also have histapenia (low-histamine/overmethylation), and copper toxicity. For you, take 50mg zinc picolinate or zinc citrate. Also take borage oil and continue with the p5p. It's high in omega6 which is also depleted from pyroluria. May want to consider a b50 or b100 complex also. This WILL work. Trust me I've been doing a ton of research and have experimented a lot and seen the results first hand! Alsoo got officially diagnosed after lab work was done at the Carl Pfeiffer Treatment Center. Good luck to you and take care..

unityemissions

11-29-2008, 09:17 PM

Okay it's been over a month since I last posted. I got my compounded nutrients a few weeks ago and decided to share with you guys exactly what I'm taking and when, as it's changed a bit and for the best!

Morning-

3 compounded capsules containing:

500mg vit-c
300mg b6
150mg p5p
100mcg biotin
400mcg folic acid
125mg niacinamide
100mg magnesium glycinate
7500iu vitamin a acetate
3000iu vitamin d3
25mg zinc citrate
100mg b1-thiamine
10mg b2-riboflavin 5 phosphate
100mg b5-pantothenic acid

along with:

1gm vitamin-c
500mg inositol hexaniacinamide
1gm borage oil
1gm fish oil

then in the afternoon:

1gm vitamin-c
500 mg inositol hexaniacinamide

evening:

3 compounded capsules:

500mg vit-c
100mg zinc picolinate
20mg manganese gluconate
400iu vitamin-e
125mg b3-niacinamide
7500iu beta carotene
100mcg selenomethionine l-blend
3000iu vitamin-d3

plus:

1gm vitamin c
500mg inositol hexaniacinamide
1gm borage oil
1gm fish oil

I feel SO much better now. Have clarity of mind, body, emotional state. It's awesome. The bumps on the back of my arms are going away. That's an omega 6 defficiency. Skin tone is improving. Developing regular sleeping patterns after getting through all the overdue dreams I missed.

Did anyone else not dream for a really long time, start taking zinc, b6, and start having MANY wild dreams? I have had at least 6 dreams before and only like an hour will pass! It's wicked cool, too. I think my brain is working overtime to consolidate all of my experiences through my dreams.

Anyways, I'm in Cancun so getting back to taking it easy. Give a shout if you got any Q's.

Brandon

Ona

12-13-2008, 03:48 PM

December 13, 2008

There is so much I have to share, now.

Anyone that would like more information on what I, now, do to control MY pyroluria, please, ask away...

I did a lot of note taking and documenting my personal symptoms and the foods, medicines, and vitamins that I was taking which contributed to my PYROLURIA symptoms.

This took some time, but I am very greatful that my symptoms are now under control.

I was diagnosed with Pyroluria when I was 28yrs old.....and only recently have all of my symptoms been controlled, ONE BY ONE, w/ the discovery of food allergies, vitamin allergies and medication allergies.

I no longer take the excessive vitamins that I did from 2005 to 2007.

In mid NOV 2008, my psych doc & my neuro doc have said that I am one of their most healthy patients and to stay on the program that I'm on......No changes to my medications (additions or substitutions).

I am SO happy and I am finally living my life. :) :) :)

I am, now, almost 32 years old and healthier than ever.... reconnecting with family, friends, able to work again, and building new relationships. Yea! :D

Looking forward to meeting you, soon.

Kind regards,

Ona OnaTutors@yahoo.com

jcc

03-17-2009, 01:24 PM

Hi Ona,

Glad to hear you are doing so well. I just reread this thread for the first time in a long time. It is a great thread.

So, yes, I'd love to know what you take and what you do (diet, etc) to keep the pyroluria in check, and any leaps in understanding you may have made since this thread started.

My daughter w/ pyroluria is doing well. She just graduated from college and is headed for grad school to be a school pyschologist. She takes her vitamins... on and off...still. The good news is when she begins to slump in either physical or mental health... she has a good idea what to try first. Well, I still remind her ;). She does report doing better when on vitamins... but, she falls off the wagon easily.

Cara

unityemissions

03-23-2009, 02:44 AM

Yes this is what I don't understand about pyroluria. It is said we have a arachindonic acid deficiency but I don't understand why this is a problem if AA is a pre-cursor to the inflammatory mediators such as leukotrienes and co. Obviously taking omega 3 supplements amplifies this deficiency because of the competition with delta-6-desaturases but why is this a prob. Obviously we do need some AA?? or this wouldn't be worth talking about.

Most diets are high in omega 6 Linoleic acid. The thought is that pyroluria is caused by a defective delta-6 desaturase which converts linoleic acid into gamma-linoleic acid.

GLA -> AA

This is why AA is depleted, and needs to be restored.

Ona

03-26-2009, 12:58 PM

Hi Ona,...I'd love to know what you take... Cara

My Vitamin Protocal

ETHICAL NUTRIENTS: ZINC STATUS (liquid) - I test my zinc status every one or two weeks...then INCREASE when liquid is tasteless.
COUNTRY LIFE: MAXI-ZINC - fantastic MULTIvitamin
NEURO-T SUPPLY - I call this my BRAIN MULTIvitamin ;)

B1 (Co-enzyme Vitamin B1: thiamin pyrophosphate)
B6 (Co-enzyme Vitamin B6: Pyridoxal-5-Phosphate)
B6 (as pyridoxine HCl)
B12 (as methylcobalamin)
C (as calcium ascorbate)
CALCIUM (as calcium ascorbate)
FOLATE
NIACIN (as niacinamide)
L-Lysine
L-Tyrosine
MAGNESIUM (as magnesium salicylate)
MANGANESE (as manganese amino acid chelate)
ZINC (as Zinc amino acid chelate)
5-HTP

My Prescription Medications Protocal

ABILIFY
ATIVAN
DIAMOX
LAMICTAL
TRILEPTAL
ZOLOFT

Ona...and what you do (diet, etc) to keep the pyroluria in check...Cara

My Diet & Excercise Routine

Foods I Avoid
MOST SWEETENERS (stevia, honey, fruit juice contrates & agave syrup are OK)

will add more details, soon...

Ona...and any leaps in understanding you may have made since this thread started....Cara

Hello Cara and everyone,

I last posted 12/13/2008 and I had last switched prescriptions around September 2008. My previous anti-psych STOPPED my hormone...and in-turn, my seizures STOPPED, as well.

However, as a female, I wanted my hormones back...so I switched anti-psych meds and... my hormones returned, the mental foggyness/zombie-effect went away, and my SEIZURES started to come back (as my hormones fluctuated throughout each month).

Three months later, in January of 2009, I was diagnosed w/ an additional medical condition to the Pyroluria called: Catamenial Epilepsy (seizures that fluctuate and cluster around a woman's monthly hormone cycles).

I had stopped my zinc and then rechecked it w/ ETHICAL NUTRIENTS: ZINC STATUS at the end of February 2009. My results were Severely Deficient in Zinc. So, I started up my multi-zinc capsules and continue to INCREASE my zinc, until I reach adaquate zinc status.

Do'n much better now...hormones and all. :)

chainedangel

05-31-2009, 04:08 PM

wow. Years of therapy, various diagnoses, and still many questions left unanswered... And then I read about pyroluria.
I just started reading about this a day or two ago but it seems to be a good fit.

Hi. I'm Amanda. I'm 31 and have been on numerous medications for mood regulation over the past ten years. I was originally diagnosed as having chronic mild depression. Then later my doc said maybe it's SAD. And most recently bipolar disorder was a suggested possibility.

And then there's my son. The diagnoses for him started around age 4. He has sensory processing disorder, adhd, odd, and shows many signs/symptoms of aspergers disorder though they still refuse to add that as a dx as he's in that gray area.

So the other day I'm reading up on bipolar to see if i think it's worth mentioning to my doc and I stumble upon an article on pyroluria. Not only did the limited info I got sound like me... it sounds like my son as well.

That being said I'm hesitant to bring this to either docs attention just yet. I've learned that most docs won't listen to me until I can prove to them that I know what I'm talking about. :rolleyes:

So, I've been reading like crazy. But there's one thing I would love to look over that I can't seem to find. Does anyone know of an exhaustive list of symptoms of pyroluria? Is there a link out there somewhere?

jcc

05-31-2009, 04:57 PM

Hi!

Here are all the combined sources I could find on Pyroluria:
http://jccglutenfree.googlepages.com/pyroluria

Of them, this site is a good comprehensive site:
Nutritional Healing - Pyroluria (http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria)

I also liked the case studies on this site:
http://www.healthrecovery.com/HRC_2006/Depression_06/D_Hide_In_Closet.htm

And this interview is good, too:
http://www.thehealingpartnership.org/psychiatric_care.htm

Here is a list of symptoms I must have found somewhere... can't remember where... or perhaps I combined lists from a couple of sites.

Symptoms may include:
poor tolerance of physical and emotional stress
impaired immune function/ frequent infections
mood swings
memory problems/ brain fog
sensitivity to light, noise, and tactile sensitivities
irritability/ explosive anger
insomnia
poor dream recall
seizures
depression
paranoia
schizophrenia

Found this on one of the links I had in TGF:

What are the symptoms of Pyroluria imbalance?

Signs and symptoms of pyroluria are many. There seems to be a familial or genetic component. A family history of mental illness and all-girl families especially if there is also a history of miscarried boys.

" Frequent ear infections as a child, as well as colds, fevers and chills.
" Fatigue
" Nervous exhaustion
" Insomnia
" Poor memory or inability to think clearly
" Hyperactivity
" Seizures
" Mood swings
" Lack of regular periods in girls
" Impotence in males
" Unusual smelling breath and body odour
" Inability to tolerate drugs and alcohol
" Cold hands and feet
" Abdominal pain
" Intolerance to some protein foods, drugs or alcohol
" Morning nausea and constipation
" Difficulty remembering dreams
" Frequent head colds and infections
" Stretch marks in the skin

Not all the symptoms are present for every pyroluric but any number of them should make you suspicious.
Pyrolurics can often be identified by their appearance:
" Pale skin. A black pyroluric will have the lightest skin in the family
" A lack of hair on the head, eye brows and eye lashes
" Teeth in the upper jaw will often be overcrowded (unless orthodontic treatments has taken place). and poor appearance of tooth enamel.
" White marks on fingernails, be opaque and be tissue paper thin.
" Acne, eczema, and herpes may also be present.
http://www.naturopathic-care.com/nutrition.html

As mentioned above, nobody will have all of the symptoms...

You are right... you don't want to tackle this with just any physician. At least it didn't go over so well for us when we mentioned it to our pediatrican...she felt it was very 'fringy'. I had to search out a doctor who knew about it. DAN! doctors are a good start... call ahead... ask if they treat adults as well as children, and just ask if they will test for pyroluria.

I'd give serious consideration to the possibility of gluten/casein sensitivity. DAN! doctors would be good ones for gluten/casein testing as well.
http://www.autismwebsite.com/practitioners/us_lc.htm

You could also ask any doctor to do celiac testing/ gluten sensitivity testing. There are a couple of different ways gluten can cause problems, and the testing is different for the autoimmune problem vs. the opiod-like peptide problem. You can either, neither, or both.
http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm

Cara

Ona

06-01-2009, 01:05 AM

Hi, all! Hope this helps out... ~Ona

"Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms" by Woody McGinnis, M.D.
Orlando 21 May 2004 http://www.alternativementalhealth.com/articles/pyroluria.htm

Great article as a scientific/medical paper. Enjoy!

Pyrrole Disorder http://www.alternativementalhealth.com/articles/walshMP.htm#Py
Omega 3s can worsen mental symptoms in bipolar or schizophrenic patients.... if they have a pyrrole disorder.... Pyroluric mental patients will usually get worse if given fish oils, DHA, EPA, etc. They thrive on Primrose Oil, a good source of AA and other omega 6s. (June 23, 2003)

Signs and Symptoms of PYROLURIA
http://www.nutri-ception.co.uk/office/documents/pdf/NCF0603.pdf
Lack of regular periods in girls and impotence in males.
The pyroluric often has unusual smelling breath and body odour (it has been likened to pear drops).
Inability to tolerate drugs and alcohol.
May wake with nausea.
Cold hands and feet.
Frequent abdominal pain.
Disperceptions.
Constipation.
Difficulty remembering dreams.
Frequent upper abdominal pain.
Stretch marks in the skin.

PYROLURIA
http://www.drkaslow.com/html/pyroluria.html
Food sources and nutritional supplements containing copper and red/yellow food dyes should be avoided.

andy1618

06-05-2009, 07:39 AM

Hi,

May I ask why some of you are using both pyridoxine and Pyridoxal 5'-Phosphate?

Ona, I think I know you from the B6children group?

Apart from Absent 'TYPE' seizures I have now been approx. 19 years seizure free thanks to B vitamins only.

One of the things that I do to help keep my gray matter ticking over is to solve the Rubik's Cube (3x3x3), Rubik's Revenge (4x4x4) & Rubik's Professor (5x5x5). My best time so far is 19min 25sec for solving all three cubes.

Regards

Andy

MTuba

10-19-2009, 02:07 PM

This is an old thread but I thought I'd post my experience.

I scored a 28 on the pyroluria urine test. I had never heard of it before my NMD tested me for it.

My symptoms: lifelong depression (I am 60), worsening with age until the last couple of years I daily thought of ways to do myself in. Anti-depressants did not help much. Best thing I had found on my own was 2000mg of L-tyrosine in the a.m.

severe food allergies, most recently all forms of animal protein; clear case of leaky gut but continually negative tests for candida; all the docs didn't know what to do. Taking probiotics helps but they don't "stick," meaning that if I stop them for three days and do a stool test, none are found. Nevertheless I continue to take them because without them my intestinal malfunction does not allow me to leave the house.

Also cannot ingest gluten or nightshades without severe effects. All celiac tests are normal but eating gluten causes intense negative mental symptoms plus stool mucus two or three days out.

Episodes of rage; seizure activity, clearly associated with the food allergies but I have to eat, so I take 900-1500 mg of gabapentin at night so I can sleep. I also take 50 mg of benedryl and 1000mg of tryptophan.

Diet...still vegan, no gluten, no nightshades, no legumes. I take a complete amino acid supplement so that I get what I need without eating animal protein.

Extreme light, touch, and noise sensitivity.

Stopped dreaming a couple years ago, except occasional nightmares.

Intense paranoia, centering mostly on my work environment. While I "knew" that people weren't out to get me, I FELT LIKE they were. Any time anyone looked at me funny, I figured they were plotting against me. A very unpleasant way to live and to have to deal with. Like most who have this disorder, I knew my mental attitudes were not correct but was powerless to change them. I also am smart enough to not act on any of the paranoia, but I still had to put up with it. It affected my behavior....people could tell I was "different" and avoided me, making the paranoia worse.

The list goes on...but you get the idea. Brain fog, inability to concentrate, felt like since I wasn't living any more might as well end the physical and mental nightmare.

I was basically just going down the phone book of alternative (NMD) physicians; the MDs clearly could not help and most were not as smart as I am, which was frustrating since I could see things they could not. Got tired of being treated like a hysterical female. I finally found an NMD who knew what test to do.

I think I may be somewhat into the Aspergers spectrum, but not to a point where I would be diagnosable as such.

So: I scored a 28 on this test. Doc started me on the following:

a.m.:
250 mg zinc picolinate before breakfast
added 5HTP to my tyrosine as he said I needed both
30 mg manganese
microcrystalline silica

Each meal: 1000mg niacinamide (for the psychiatric symptoms)

bedtime:
50 mg P5P
25 mg "regular" B6

Results:
In less than a week my suicidal depression simply melted away. Life is not perfect but I am no longer plotting my demise on a daily basis. I'm no longer paranoid, at least certainly not to the extent I was. People have commented that I seem more relaxed. It is an immense relief to not have to monitor my behavior 100% of the time, since my reactions are much more normal than they were.

Light sensitivity has lessened a lot; I find that I can walk to my car from a building without having to put on sunglasses. My eyes no longer tear up and I can actually keep them open; it looks "bright" out but it doesn't hurt any more.

Noise....not sure. I still wear ear plugs at night.

Dreams....much more dreaming occurring, and not just the bad kind.

The intestinal thing does not appear to have improved. I'll see my doc tomorrow and we can discuss that.

So....if your doc is a "doubting MD," I strongly suggest you find an open-minded NMD. Not all NMDs are open-minded, but since the treatment for this is not allopathic, you're not at all likely to find an allopath (MD) who will even believe in its existence.

Well worth getting tested and treated, even if your score is not off the scale.

Don't take these amounts of zinc if you have not been diagnosed!! Zinc in these amounts is TOXIC if you do not have pyroluria.

But if you want to do a self-test....try the B6 + P5P. In this dose it will not hurt you, and if you have an "explosion of dreaming," that is a really good indication that you need to get tested for pyroluria.

All the best to all of you.

MTuba

jcc

10-19-2009, 04:36 PM

Thank you for taking the time and making the effort to post about your experience. I'm happy to hear you've experienced improvement! I stay subscribed to this thread, and hope that others who come across this thread will stop to tell their stories, too. It is nice to have the validation of others since our doctors are so dismissive about this.

I know my daughter's pediatrician, who is very nice and is the only 1 out of 4 in the office who believes in my daughter's gluten sensitivity (no celiac disease)... said "that is really controversial" when I mentioned my daughter testing positive for pyroluria. All I could respond with is "well, the vitamins worked for her. she was a whole new person in less than three weeks."

Best of luck to you!

capebite

11-18-2009, 12:55 PM

A naturoapthic friend in arizona suggested that I might have KPU. I have very cold hands and feet. Dark blurred vision. Twitching tremors and uncontrolled shaking. Numbness right arm and pain shin bone. many other symptoms. terrible insomnia as I hear music on the right side of my head at night with constant ringing sound. I am literally at the end of my rope and ned help. I did have a metal test a few years back which came up very high copper levels and I am unable to tolerate zinc or molybdenum as these make all my symptoms worse. I am in Cape Cod Massachusetts 1 1/2 hour away from Boston and need help finding a practitioner to test and treat this. Please send private email as my vision and endurance are so very poor.

recovering

12-10-2009, 05:16 AM

I am a 25 year old psychiatric nurse from Australia.

I am trying treatment for my pyrrole level of 28 which was taken when i wasn't stressed a few months ago. My mum and older sister have just been diagnosed too. I'm placing a lot of faith in pfeiffer practice to use these methods instead of the methods i've been trained to use. It's very scary. I'm nearly off the Effexor XR ive been dependent on for 3 years which was making me much worse but was the only option i knew of. Discontinuation syndrome from Effexor is horrendous. I'm finding the supplements very powerful however and they seem to work. When i'm not under severe stress they've been working.

I meet the DSM criteria for Premenstrual Dysphoric disorder, tourettes, & Bipolar 2, i get ulcers, bruising, hypermobile joints, cholesterol, hypoglycemia, allergies and food intolerance, weight gain on my tummy, pale skin, thin ankles and wrists, energy level irregularities, sleeping difficulties, low bone density among tons of other symptoms. Now i have just have been diagnosed with pyroluria and i hope this is the answer to my prayers. It makes a lot of sense of my symptoms.

I hope to get better and share these methods with my clients if it works.