Questions about Lyme versus Fibromyalgia

[Rennoli]

Um Hi, I am definitely new to this forum but have been in and out of the spinal disorders area for about 12 years.

Anyway, I was wondering about something. I was very sick in 1995 with a quick onset. I had weird sores and extreme pain. After testing me for Lyme and the results coming back inconclusive and has ever since. I am tested annually through some type of blood screening. I don't really know anything about it. Oh, they finally said I had mono in 95 though I didn't test positively for it.

Ok, so some years ago I was finally dx'd with fibro because I had too many problems the doctors couldn't figure out. Yes, I passed (or failed) the point test and they told me I had fibro. Trouble is, the more I look into it the more I think I may have lyme or even chronic lyme and not fibro at all.

I guess the testing done in MI isn't thorough enough to determine whether I have lyme or not.

Ok, so my question is, does anyone have any ideas where I should go from here? I have some really good site on both conditions and will deal with it if I do have fibro. I have heard lyme is possibly curable and would love to, at the very least, know whether I have it or not.

I know this is broad and basic at the same time and I apologize. I just hurt all of the time and find the more I read info regarding lyme, the more symptoms I seem to have that fit that better than anything else. Oh, I was also mis-diagnosed with Lupus, MS, and RSD. (all since have been reversed dx's)

Yes, I do have a lot of spinal issues but I know they will never go away. I don't know if this will but it seems to get worse the more time goes on.

If anyone knows of any links that compare or have any correlations between lyme and fibro, could you reply? Any and all info is appreciated, I want to have some knowledge behind me when I see my doctor again.

I would so appreciate it. Thanks in advance, even if no one answers.

Take care all

Dianna

[lymebytes]

Hi Dianna, welcome!

Many people who have Lyme were first diagnosed with other diseases including Fibromyalgia, CFS, MS, and ALS.

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

When Lyme disease is possible, it is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test you had done?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. 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.

If you would like a doctor recommendaiton, you can send me a private message or email me at ko_@bellsouth.net

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.

I hope you can get answers soon.

[RuthHinWV]

Hi Dianna, Here is a site that might help answer some of your questions.

http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/3579

Late and Chronic Lyme Disease:
Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia ChronicFatiguesupport.com

All of us who have Lyme completely understand the pain; we each have either had it & now it's gone or we're still having problems with it. It's a common symptoms of Lyme.

With this disease, you have to go with your gut; you have to research, make the doctors listen to you & take in to consideration what you've found.

As far as a blood testing lab, I say Igenex in Palo Alto, CA. There are many labs, but Igenex was the one I found to be highly recommended when I first started this nightmare in 2002. I didn't find a doctor who was "capable" of making a diagnosis based on my symptoms until a year later.

SYMPTOMS are how the disease (Lyme) is diagnosed; the tests are used to confirm the diagnosis ONLY!! That comes from the CDC if any doctor questions the reasoning.

What I did, because my GP refused to do any blood work including Lupus, was to go to a local quick care clinic & ask if a doctor there would draw the blood for what I wanted it drawn for (Lyme) & send the blood to the lab I wanted it sent to (Igenex); a doc there was more than willing to help me out.

That was before I found a Lyme Literate Medical Doctor (LLMD); I had to do it on my own to get things started. You may find that you have to do the same. Also, if you do this, ask for a copy of the results for your own "files". I used them to take to the LLMD when I finally had an appointment.

Hope this helps!! Ruth

[Sonsie]

If anyone knows of any links that compare or have any correlations between lyme and fibro, could you reply?
Sorry you've not been able to find decent medical care. I've been through the mill too, and I'm sure most folks here have been. Many, like you, are still struggling for answers.

For what it's worth, my LLMD doesn't believe fibromyaligia is a real diagnosis. He believes that it is a bunch of symptoms given a name by a bunch of doctors who are clueless. He believes that it is in most cases actually Lyme disease. I was diagnosed with LD nearly four years ago. Treatment has helped a lot, but I was sick for decades, and as a result I am likely to never be well. And treatment can sometimes be as miserable as the illness.

At this point, I do share my doctor's disdain for the concept that fibromyalgia is an actual illness. Until you can find a doctor who is willing to admit that Lyme disease exists and who understands the shortcomings of blood tests, and who knows how to diagnose it and co-infections, you likely will never know what ails you.

[Rennoli]

First I want to thank all of you who have replied. The sites and info you have given me make me think more and more that I may have this disease. There is a site, http://www.canlyme.com/rash.html that shows many pictures of the rashes you may incur. The one labeled "Above- Lyme rash with co-infection erhlichiosis" looks exactly like what I had on my chest and stomach. I also had another rash which was no quite as severe at the same time....looks kind of like the one directly below that photo.

For what it's worth, I feel nearly the same way your doctor does, Sonsie, I cannot get my head around fibro. When I went to the UofM pain clinic (for my spinal issues) they told me flat-out they did not believe nor treat fibro in their clinic for the same reasons. It feels like a label to me, for all those things they can't figure out.

I am compiling information to take into my PC, he is a really really good doctor and is willing to listen and figure things out. He doesn't like the fibro label either, just as he didn't agree I had RSD, MS, Lupus, and some others I can't think of I have been mis-diagnosed with over the years.

Now my concern, and maybe I am getting ahead of myself here, is how this is going to affect me since I had those rashes over 12 years ago. Would this put me in a Chronic state or is there still treatment that may cure...or least of all....help me with this.

As I said in my post, I know all about my spine and will have to deal with that for the rest of my life. If there is ANY way to get easement for these other nasty bothers...well, it would be fab.

Looking at that list of symptom scares me because I have numerous ones even if I skip the ones I seem to have once in a while. I.e. facial twitching (I always attribute it to stress) and the hair loss....I lose handfuls a day but have such thick hair you cannot tell. So those are iffy. And some are definite no, thank goodness.

Anyway, I am on a roll and a mission and I am so thankful to all of you for the help you have given me. This is all new to me but it feels so right. I do not want to self diagnose...but it seems like someone has dropped the ball along the way to me.

Thanks a MILLION
Dianna

[Sonsie]

Would this put me in a Chronic state or is there still treatment that may cure.
Chronic, yes. Treatment and management is available and will help you.

facial twitching
Twitches are a result of neurological involvement, of course, not stress in spite of what we are told when we mention them to doctors.

and the hair loss....I lose handfuls a day
Hair loss is what led me to realize that I was dealing with Lyme -- got it from a tick bite overseas. The dermatology specialist I saw for that didn't help much and was later astounded to see me post-Lyme treatment. She had never known anyone with the alopecia I had to experience remission or improvement. Even then, she has refused to consider, let alone acknowlege, tick-borne diseases as a cause, and she continues to mistreat patients like me as far as I know. (I dropped her like a hot potato, of course.)

Please know that you won't have thick hair for much longer, if you don't get treated. My hair was so thick that hair stylists used to jump the first time they handled it. Now I have 20% of that. :( My thick hair was one factor that caused doctors to ignore my concerns -- since I had more hair than their other patients, I was crazy, you know. :mad: Their stupidity is outrageous, to say the least.

I am compiling information to take into my PC, he is a really really good doctor and is willing to listen and figure things out.
This is good news, but I fear that he won't be willing/able to treat you appropriately, given the constraints doctors are under (insurance and legal). Please do what you can to find an LLMD. If you cannot do that, be sure that your PCP joins ILADS now, so that he has access to consultations with experienced doctors as well as up-to-date education and accurate information.

[lymebytes]

Hi Dianna. Many of us have been where you are now. It is important to learn as much as you can. Knowledge is power and will help you make the best choices.

Unfortunately, many doctors are ignorant about tick-borne illnesses. It is important to see a knowledgeable doctor and be tested for all the co-infections. If you need a doctor recommenation, let us know.

Many people have Lyme for a long time before getting diagnosed. I believe you can still get better with treatment.

Good luck!

[Rennoli]

I know my doctor does not know much about Lyme, but he is very willing to learn or find someone who will help me. I have stayed with him since 1990 because of this. Not that I had any real issues before that, except for back pain.

He is the kind of doctor that get interested in problems the more information you bring in. He tries to prove it wrong, so to speak.

But I know I will probably have to see a specialist and have contacted a local support group to see if they have any doctor lists for treatment. Heck, I need a dx first, but still. LOL

I finally bought some ink for my printer so I am hitting the info today, printing it out, and calling my doctor this afternoon for a sit-down. When I last saw him and mentioned Lyme his interests were peaked, he told me to gather information and see what comes of it. So we shall see.

I do so appreciate all the help you 3 are giving me. It would be a VERY good thing to find a source to all this junk...even better if it's curable. I am just too young to have all these degenerative and immunity issues without something to cause them, if you hear me.

Thanks over and over again!
Dianna

[Sonsie]

Tip for you: Just give your doctor http://www.ilads.org so that he'll have valid information based on actual science. That web site links to other valid information. ILADS works with patient organizations, and it's all pretty coordinated.

Doing this will save you lots of paper and toner costs too. You're going to need every cent you have for treatment.