They think it may be Lyme after 2 1/4 years. Can you help?

[uvamomb]

Hi, my name is Kathy, and it looks like you have a very tight nit group here. I think that is great that you all know so much about each other and support each other so well.
I've been suffering with unberable pain in my head (migraines), neck, shoulders, arms, hands, feet, back, etc. with a lot of numbness, lots of stomach involvment, severe insomnia, weird swellings, snesitivity to hot and cold. I also waked up soaked in sweat. Finally, my psychiatrist, believe it or not ran IFA B Burgdorferi G/M/A - Negative, IGm Western Blot, Negative buty with six double starred " Indeterminate bands, and recommended retesting or testing a different way, Lyme IgG Western Blot, same thing, with also six inderterminate bands and the Multiplesx B. urgdorferi, also negative.
My question is, did you guys go with more testing or were you diagnosed on your medical history (we had just cleared our land by the lake at the end of summer and I had some sort of "red thing" on my inner thigh.) I would appreciate any and all replies and apologize for this being so long. I'm just looking for answers and am dying to come off all these meds (including 180 mg of morphine a day.)
Thank you all, and I truly wish nothing but the best for each amd every one of you.
Hugs,
Kathy

[uvamomb]

Also, had significant deficiency of B12 and no traceable amount of Vitamin D in my blood. PLEASE, PLEASE BE CHECKED FOR BOTH OF THESE. BEING DEFICIENT IN EITHER ONE OR BOTH CAN BE VERY, VERY DANGEROUS.
THANKS,
kATHY:)

[lymebytes]

Hi uvamomb, welcome!

I am sorry you have been so sick. Do you have a copy of your Western Blot? If so, I can help you interpret it. No Lyme test is completely reliable, and results can vary by lab. The CDC requires a large number of bands to show for the test to be considered positive, but many people who have Lyme do not have this many bands. Lyme doctors often look at which bands show, some are specific for Lyme.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Lyme and Babesiosis can cause the symptoms you list.

If you need a doctor recommendation, let me know..

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Thanks for the reminder to have those levels checked. Many people, including myself, who have Lyme are deficient in Vitamin D.

Hang in there okay? Good help is available.

[uvamomb]

Hi, Lymebytes,
Thank you for all the information. I have about 98% of the symptoms for Lyme.
My Lyme IgG Western Blot, of course, came back negative, but shows the following as well:

**23-25kDa.
**31kDa Ind.
**34kDa -
**39kDa -
**41kDa -
**83-93 kDa -

It states that "Presence of only one double starred bands in a negative report may inclidicate clinical significance.**** Band Intensity: Negative (0_: No visibile band present. Inderterminate (IND): Band present with intensity les than Weak (1=) Positive Control. Positive (1+ to 4+: Band present at an intensity less than/= Weak (1+) Positive Control. " It also states that they recommend testing with another mehtod and/or retest in 4-6 weeks.

Thank you so much again for any and all help you can give me. I really appreciate it.
How are you this weekend? Hope you're having a good and pain free one.
Hugs and God bless,
Kathy

[lymebytes]

Hi Kathy. Which lab did your Western Blot? What is the result of band 23-25? No Lyme test is completely reliable, and reuslts can vary by lab. It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA. They use more sensitive testing and list more bands on the Western Blot.

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

There are a few Lyme doctors in the DC/MD area. Would you like their names?

[timaca]

Follows is some info on lyme, including 3 labs that are good for lyme testing. If possible, get tested by all the labs if you can. The more info, the better. Good luck....Timaca

A good symptom list on lyme is www.canlyme.com/patsymptoms.html.



A good article on lyme is www.canlyme.com/donta.html. Another article on lyme is at www.lyme.org/conferences/98_abstract.html (scroll down and read “Lyme Borreliosis and Related Disorders”—it’s about halfway down the page). Also at www.ilads.org, look on the left side. Click on “Treatment Guidelines.” Click on the article by Dr. Burrascano. Also at www.ilads.org, on the right hand side, click on “National Guideline Clearinghouse Treatment Guidelines.”



An article about chronic fatigue syndrome, fibromyalgia and lyme is www.canlyme.com/fibrocfslyme.html.



Some good labs for lyme testing are Igenex lab www.igenex.com

Medical Diagnostics Lab www.mdlab.com

and SUNY at Stony Brook www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.



Some good articles on lyme testing are www.canlyme.com/wb.html and www.igenex.com/labtest.htm and www.igenex.com/lymeopt2.htm. Please note that there is NO definitive test for lyme disease. Lyme disease is a CLINICAL diagnosis….lab data is supportive ONLY. See the recent reseach from John Hopkins University: http://tinyurl.com/pjnkm.



A lyme magazine is Lyme Times and can be found at www.lymetimes.org



Some good lyme web sites are www.canlyme.com

www.columbia-lyme.org

www.lymediseaseassociation.org

www.lymepa.org

www.lymeinfo.net/lymefiles.html

www.ilads.org

www.unh-lyme.org

www.lymenet.org (a lyme disease support group)



To find a doctor that knows about lyme, go to www.lymenet.org. Click on flash discussions. Click on seeking a doctor and post there. Also go to www.lymediseaseassociation.org. Look for “Doctor Referrals” on the left hand side. Post there. They will get back to you in a week or so.

[uvamomb]

Thank you all so much for being so kind to me. I am so excited that it looks like I may have lyme, you just don't know. I know it's not a great thing to have, but what I've been living with there was really no hope.
The Band you asked me about came back double starred. Evidently, I needed five double starred to come back with a positive, and aI had four. The lab used was Igenex, so I'm good there.
I would love a name or two of a doc - I live in Richmond.
Thank you all again and I wil keep in touch and let you know how things come out.
Much love,
Kathy

[Buttons2]

Kathy, good thing you found BT huh? Everyone suffering for years with no answers knows exactly what you mean about being glad it's Lyme. Not an easy disease to deal with-but it's sure better to have some answers & not think you're crazy! Kudos to the shrink!

Get a good doc & start on treatment. Keep a positive attitude & reach out for all the support you can get.

We need to liven up this forum, so welcome & keep us updated-lots of truly caring & informative people here.

Take care,Buttons

P.S. Are you taking B12 Methylcobalamin?

[lymebytes]

Hi Kathy. It is good the Western Blot was done at IgeneX. Band 23-25 is definitely a Lyme specific band.

We can all understand your wanting validation for what you have been dealing with. You are definitely on the right track. I will give you the doctor names through the private message. Please let me know if you get them okay?

[2mag]

hi uvamom

so sorry for all your trouble

lyme is tough to handle -especially when the medical field does
not have all the information on it

I actually had a similar test initially and did not know that I should have pursued more testing immediately.

when I got redrawn- I did it early in the week - Monday or Tuesday.
during my menses, - mad sure my temp was up ( which is difficult with Lyme-- long hot shower and extra heat in the car. I also used Niacin to irritate the spirocytes

As everyone has stated, the tests are not the greatest- a good LLMD can diagnose by symtoms and treat accordingl. I was diagnosed with Lyme and Babesia prior to the tests results ( done at Igenex the Second time)

have you been tested for Babesia - the sweats seem to be a questionable sign of this. How is your balance- Are you able to walk straight when your eyes are closed. (Please do not hurt your self in doing this )

uvamom- there is lots of help here and many other informational sites

get well

2mag

[uvamomb]

Hi, guys. Lymebytes, I got your private message and appreciate all of the info so much. I've had a bad day, but will try and read some tomorrow. Thank you again.
Buttons, I cannot even close my eyes and stand in one place without getting dizzy and falling over to one side, much less walk. I am on B12 and D.
Thank you all for welcoming me so nicely. My primary care doctor is going to go ahead and diagnose me with clinical chronic lyme and try to get approval for the 14 weeks I.V. Antibiotics from my insurance company! I'm so happy. Is it rough, I mean do you get sicker when you'r killing off these monsters? Does the terrible pain go away quickly or slowly? Did you guys do yours at home or hospital?
Did you have any problems with the insurance company?

Thanks again for taking me in. If I can help anyone, let me know,but I have lots to learn first.
Thanks and hugs,
Kathy:)

[uvamomb]

Hi, 2Mag, I was tested at Igenex as well and Babesia is one my docs want to test for next.
Talk to you soon, I'm just ready to get going and feeling better, get back on with my life!!!! I'm a very social person and I've been cooped up and drugged up for nearly 2 -1/2 years now!!! I cannot wait to get better. I think I'll drive to D.C. and go shopping at Tyson's Corner. Anybody wanna come? Then, go for drinks somewhere and just spend the night in a cool hotel, maybe even some dancing, or just go to Cancun and soak up some sun!

Sleeping pills and pain pills kicking in. The mouth is going.
Goodnight, everybody!
AND THANKS AGAIN
Kathy

[lymebytes]

Hi Kathy. The DC trip sounds like a blast!!!

[blimeyitslymie]

uva mom,

not much more i can contribute ... except my best wishes. getting a good lyme doc helps. i know of a very good one in northern virginia. send me a private message if you want the name and number.

blimey

[uvamomb]

Thanks, Limey, Lymebytes gave me the name and number of the one in D.C.
I again appreciate the support from you all.
Love,
Kathy

[lymebytes]

Good luck Kathy! Keep us posted on how you are doing okay?

[Luvmycat]

Hi. I was a lurker and poster on this site years ago and I still visit now and then to see what's going on. My Lyme symptoms were strictly neurological and never in my wildest dreams would I have thought it was Lyme. I was always in the Neuromuscular forum and someone posted a Lyme link and I clicked on it---I don't know why. I am ever so thankful.

I found a GREAT Lyme specialist and just finished up 3 years and 1 month of antibiotics, including 8 weeks of IV Rocephin, over 200 Bicillin shots, Ceftin, Biaxin, Rifampin, Zithromax, Flagyl and Minocin. I've been off of all meds for 2 weeks now and so far so good, except for a little of the light sensitivity creeping back. Anyone, doctor or otherwise, that thinks 3 weeks of antibiotics can cure a bad case of this scourge is living in a fantasy world!

Carol

[Buttons2]

And you definitely deserve it! Here's hoping you reach the 2 month mark symptom free! Thanks for taking the time to share with us. Anyone improving is a big boost to others'.

Kathy, hope you are doing better.....

Buttons