Is fibromyalgia always lyme disease?

Discussion in 'Lyme Disease Archives' started by annierose, Jul 9, 2009.

  1. annierose

    annierose New Member

    Hello all

    First time poster, but have been reading the boards for a quite a while! Thanks for all the great

    information!

    I have a question with regards to fibromyalgia and lyme disease.

    If you 'never' get a positive test for lyme disease, and a doctor 'never' gives you a

    clinical diagnoses of lyme, can you 'just' have fibromyalgia without it being lyme disease?

    Is it a disease on it's own? (if you understand what I'm 'trying' to say here.....apologies

    if I'm not making myself understood...sometimes when I read anything I've written 'I' don't even

    understand myself..lol).

    Thanks for your help!

    annierose






  2. victoria

    victoria New Member

    There are many other stealth pathogens, both viral and bacterial. And more than 1 way to catch many of these other than a tick bite. And because they can lay dormant for a while as well as cycle in their activities, the blood tests for them are very unreliable.

    BTW, if one does have lyme, it is rather rare to 'just' have Lyme and not have a co-infection of some type, usually more than 1. These include mycoplasma (talked about a lot on FM board), over 30 different types of bartonella, babesiosis (1-celled protozoan), ehrlichiosis, and many others. (You can look up all what ticks carry).

    Besides other ways of becoming infected, the other problem is that often one doesn't even know if one's been bitten, my son (CDC+ 2X) never was to our knowledge and never had a bulls-eyerash... he also has symptoms of bartonella and babesiosis cycle.

    I never had a rash either, but showed lyme antibodies in 2001 (my doc never told me & never sent me for the Western Blot as suggested by the lab: I recently realized it after going thru old files).

    I have an ongoing post on the CF/FM/ME page of other things that one can have along with or instead of CF/FM/ME.

    http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1231388

    I know my problems started with one year of mono at 18; imho it has steadily broken down my system and lessened resistance to other things, so I know I'm dealing with that even tho no tests have ever showed it - this family of viruses can lay low/dormant at times too, as evidenced by shingles (h. zoster aka chickenpox virus).

    From what I've seen, most people have more than one problem (ie, infection) after a period of time anyway.

    Hope that helps.

    All the best,
    Victoria

    PS it takes a VERY astute and courageous doctor to give you a clinical dx of any of these stealth pathogens, much less give you a clinical trial of abx to see how you react.


    <


    [This Message was Edited on 07/10/2009]
  3. Nanie46

    Nanie46 Moderator

    Hi and welcome!

    FM isn't always caused by the bacteria that causes lyme (borrelia burgdorferi), but it often can be.

    It is important to remember that FMS and CFS are syndromes....sets of symptoms given a new name by Dr's. Anyone who has these diagnoses is told that there is no known cause.

    It only makes sense that everything has a cause......and most likely it is infectious.....viruses, bacteria and other pathogens.

    It is unfortunate that so many people are stuck with diagnoses that allow Dr's to just treat them by trying to cover up their symptoms...instead of searching for the cause and treating it.

    Many people have more than one infection. It takes a really good Dr to find the cause(s) of the symptoms and address them.

    Sure you can be stuck with just a diagnosis of FM.....but it was still caused by something that no one bothered to find.

    People often get hung up on the fact that their symptoms fit exactly FM or CFS.....so they don't consider borrelia burgdorferi or another infectious agent because they think of them as completely different illnesses that don't apply to them.

    The truth is it all comes back to the root cause..........you must find it and treat it before you can recover.

    I had just a FM diagnosis for 21 years. I had to do the research myself to discover in 2009 that my fibromyalgia syndrome was caused by borrelia burgdorferi.

    I have been treating it now for 5 months. I am sleeping better so far. It will be a long road because it was untreated for so long.

    If we can help you further, keep posting.


  4. annierose

    annierose New Member

    Thanks for the welcome and all the info!

    Very much appreciated!

    I have FM, but recently I've been reading that it may be caused from lyme.

    That's why I asked this question. If I never get a lyme diagnoses, then 'what' is wrong with

    me? Would it still be considered fibromyalgia? What caused mine.....not really sure.

    And as far as lyme disease, I don't remember a rash, or any kind of bite. But apparently that's

    very common?!

    Thanks for taking the time to read my post!




    annierose











  5. victoria

    victoria New Member

    Q: "If I never get a lyme diagnoses, then 'what' is wrong with me?"

    A: There are other stealth pathogens both viral and bacterial, like mycoplasma and the herpes family - most people find they have more than one problem, no matter which diagnoses are suspected or confirmed.


    Q: "Would it still be considered fibromyalgia?"

    A: If you were treated for a disease(s) whether it was a clinical dx or backed up by lab (none have a 100% reliability at detecting stealth pathogens), AND you were able to put all your symptoms into remission, I 'think' the answer would be no as the diagnoses would change to whatever all was treated. If there were still some problems left for which there were no apparent answers, you probably would also carry the FM dx... This has been discussed off and on at the FM board, no firm answers for many people.


    Q: "And as far as lyme disease, I don't remember a rash, or any kind of bite. But apparently that's very common?!"


    A: Yes, as many as 50% do not remember one. The ticks are very tiny and easily missed if they're in the nether regions or in our hair. My son never had an apparent rash, neither did I, nor did my daughter's BF. I know 3 others who have had the rash.


    Hope that makes it a bit more succinct...

    take care, and good luck.

    all the best,
    Victoria



    (grrr, the board is not cooperating with making paragraphs...)


    [This Message was Edited on 07/15/2009]
  6. Nanie46

    Nanie46 Moderator

    Hi,

    Since fibromyalgia is a set of symptoms with "no known cause" I would never settle for just that diagnosis, knowing what I know now. Everything has a cause.

    This is how I think of it......I had a fibromyalgia diagnosis for 21 years. In 2009 I discovered the cause of my illness was the lyme bacteria.

    Some would say that I do not have fibro, I just have lyme. I disagree because the fibro (a set of symptoms) actually becomes a symptom of lyme. It can still be used as a diagnosis, and that is what my LLMD does.

    For instance....my daughter has trigeminal neuralgia, migraines and insomnia. Those symptoms are the result of lyme and coinfections, but she still has migraine, trigeminal neuralgia and insomnia diagnoses.

    It doesn't have to be one or the other. The really important point is to find the cause of whatever symptoms you are having.

    My daughter and I do not remember a tick bite or a rash either.



  7. TeaBisqit

    TeaBisqit Member

    I was advanced Lyme first, but after getting hit with something in the 80's I started to develop Fibro symptoms. I think viruses or environmental toxins get in and unleash the Lyme. I think you can have Lyme and be virtually symptom free for a long time and then something gets in and unleashes it.
  8. annierose

    annierose New Member

    I'm a wee bit confused about this fibro/lyme thing.

    But you have given me lots of great insight here. My sincere thanks to all who responded!

    The trick is now finding out 'what' caused my fibromyalgia. You know, I did have my

    blood tested at Igenex. And I didn't have enough bands for it to be considered

    a positive result. So that's why I'm back at square one now. Oh well. It was worth checking

    into I suppose.

    I'm not so sure doctors here will check into it being any other kind of virus or bacteria?! Once

    you're told its fibro or cfs, well, that's 'the' diagnoses. Case closed. At least, I've never heard

    of a doctor searching for anything else? If you get my drift. Sigh.

    Anyways, thanks again folks. You've been most helpful.



    annierose
  9. Nanie46

    Nanie46 Moderator

    Can you post your individual band results from your Igenex western blot you had in the past?

    Mine was also officially CDC negative and Igenex negative, but I had species specific bands that indicated lyme.

    The CDC criteria is only for reporting purposes and is not meant in any way to be used for diagnosis.

    LLMD's know that you don't have to be CDC positive or Igenex positive to have Lyme.

    Dr B says in the following paper, page 7, that you should see band 41 and one species specific band..........


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Also, it is very important to remember that lyme is never, never ruled out by just a negative test.....it is a clinical diagnosis based on history and symptoms.......99% of Dr's are not lyme literate and do not know any of this.

    Because of this, many Dr's mistakenly rule out Lyme and leave alot of Lyme patients undiagnosed and suffering for the rest of their lives.
  10. annierose

    annierose New Member

    Thanks for replying and for your interest in my test results.

    (I hope this doesnt post twice.....the first one seems to have disappeared into the wide, wide,

    world of never-to-be-seen-again-posts-and-replies..lol)


    Anyways, my Igenex test was done in '08 and were as follows:

    Negative for both the IgG and the IgM. the only bands with any markers beside them were:

    On the lgM
    # 31 +++
    # 41 IND

    On the lgG
    # 41 +

    I have the usual fm/cfs symptoms, but have noticed more neurological symptoms in the last

    few years, i.e. bladder problems, balance problems, vision problems, memory, and 24/7

    tingling/numbness/vibrating(?) from head to toe. And other symptoms, too numerous to

    mention.


    Thanks for providing me with that link. I will check into that asap!

    Best wishes

    annierose








  11. farradaymcg

    farradaymcg New Member

    I, too, had a bad year of mono at age 18. I was hospitalized, had enlarged spleen and hepatitis. My Chinese doc assures me that that was the beginning of my troubles. Looking back at miscarriages and other problems, he is probably right. I had always been strong, energetic before the mono.
  12. Nanie46

    Nanie46 Moderator

    Hi,

    Thanks for posting your Igenex results.

    Band 31 is a lyme specific band. It can crossreact with viruses also.

    Given your history and symptoms, combined with your band 31 and 41 on the WB, it sure sounds convincing for lyme.

    I hope you get proper treatment and recover.

    Make sure coinfections are addressed.

    I can provide you with many resources/papers to read. You can also find great resources at lymenet.org....especially the Medical Questions board.

    I will be away for about 10 days and then will return to the board.
  13. annierose

    annierose New Member

    Thank you for your reply, and for all the information you have provided me regarding lyme!

    A difficult diagnosis to obtain, that's for sure! I really didn't think I had enough bands

    for it to be lyme? Hmm. Interesting.

    I'm not sure what to do now, other than to keep myself as educated as possible about

    lyme, and hopefully find a doctor up here that is willing to look into a lyme diagnoses.

    Thanks again for your support and for all of your help.

    Enjoy your time away!

    annierose