i do not have lyme

Discussion in 'Fibromyalgia Main Forum' started by glenda2, Aug 8, 2010.

  1. glenda2

    glenda2 New Member

    i have FM!!!! i know some of you may have lyme but that does not mean we all do! sorry if i offend anyone that is not at all what i am trying to do. i am just tired of people telling me FM is lyme....it is not! thanks for letting me vent... this is in fact an FM message board & all is welcome but please stop telling people they probably have lymes & the dr misdiagnosed them.. i have had FM for 18 years after a surgery gone bad...nearly killed me...that is not lymes. sorry again it just gets me going after so long of hearing it is lymes!
  2. TigerLilea

    TigerLilea Active Member

    I feel the same way, Glenda. I have CFS, not lyme. I do not have arthritic like pain; never had. It isn't lyme. I'm sure some people do get misdiagnosed, but I just don't believe that every person with CFS and/or FM has un- or mis- diagnosed lyme.
  3. glenda2

    glenda2 New Member

    i agree with you so much....there has been alot read this post but you are the only to respond.
    i know some do have lyme but not all of us...mybe you & i are the only two that do not have lyme,,,hahaha
  4. butterflydream

    butterflydream New Member

    i do have Fibromyalgia.

  5. u&iraok

    u&iraok New Member

    Are we sure that Lyme and it's co-infections, babesia, etc. are the proximate cause? What if some people with ME/CFS get Lyme, while others get/have EBV or Herpes or XMRV but don't get Lyme, etc. It's difficult sometimes to distinguish between cause and effect. Which came first? Or maybe Lyme and CFS are two different things with similar symptoms.

    Here's one possible reason why they are similar:

    "How does CFS relate to other similar illnesses such as fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, Lyme disease, candida, etc.)?


    There are several conditions whose symptoms and patterns are so similar that many believe there must be a common mechanism involved. Some research has suggested that dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis may be implicated in several or all of these conditions. This axis controls stress response and many other bodily functions. If HPA dysfunction is truly involved in many of these conditions, it would be little surprise since the neuroendocrine mechanisms of the HPA axis are both complex and delicate, and thus minor variations in such a dysfunction might well produce the variants we are seeing in these similar illnesses."




    [This Message was Edited on 08/09/2010]
  6. Misfit101

    Misfit101 New Member

    I dont think ANYONE is implying that ALL people with FM/CFS/ME have lyme. Its a POSSIBILITY and posting links and info are merely a way to help people. I for one am grateful for that. I DO have lyme...and if not for that info id have likely gone the rest of my life thinking it was FM. Knowledge is power.
  7. victoria

    victoria New Member

    I would not have known about it without this board and one other place; never would have gotten my son dx'd. For the record, not everyone gets the same symptoms anyway, not even arthritis like pain.

    Personally I have ALWAYS found it helpful for others to suggest possibilities to me based on their own experiences... I have always found this board to be about that, which is why I still post questions and respond to others.

    I do just think that by the time we get here, most of us have more than one thing, whether or not there is a 'pure' CFIDS or FM or ME dx. Infectious bugs are so opportunistic.

    As to who has bumped up some old posts, I don't know.

    all the best,
    Victoria
  8. glenda2

    glenda2 New Member

    i understand & i did say i know some do have lyme....but some people (not all) insist that fm is lyme & it is not!

    i'm happy for those of you who found out you have lyme & can now start to feel better!!!!!

    i only get upset when people tell us we have lyme!!! not all of us do!!
  9. Janalynn

    Janalynn New Member

    I agree and I know what you're saying.

    I do appreciate people saying 'get checked for this", but it does seem like often some are saying "you can't just have FM, it has to be caused from an infection: i.e. Lyme" and then a long list of Lyme info.

    It was the same thing for a while with thyroid -

    A while back there were a ton of Lyme postings and a lot of complaints I think, that's why they created a Lyme board.
  10. glenda2

    glenda2 New Member

    i couldn't have said it better myself!! maybe i said it all wrong in my 1st post...i am glad i am not the only one that feels this way!! i really thought there would be more that felt that way!!
  11. munch1958

    munch1958 Member

    Until there is some sort of accurate test that tells us who is infected with Borrelia bacteria (Lyme) and who is not the debate about this will rage on. Until the average doctor on the corner understands what this illness is and what it is not the debate will rage on.

    I've seen trends come and go during my time living with chronic fatigue and pain. The onset of fatigue happened for me after my child was born in 1978. I got my first treatment for fatigue in 1981 when I went to see a doctor who specialized in clinical ecology except it wasn't called that back then.

    As a child, I was never in great health. I had constant ear infections and a strange hand rash. I remember being so exhausted that I couldn't even walk home from the grocery store with my siblings. My insomnia started in second grade.

    From 1981 on, I spent thousands of hours doing all kinds of research about CFS & FM but never got any better. I read every book I could find. I spent hours in medical libraries researching in medical journals. I saw some improvements but never really found any treatments that made me feel great.

    I tried all kinds of hormones including Armour thyroid and cortisol replacement. None of the doctors that I'd seen ever bothered to do any follow up labs to check to see if my blood levels were correct for hormones. They just gave me what they thought were "adequate doses".

    Because of my association with the Endometriosis Association, I knew about the candida connection so I shied away from antibiotics of all kinds. I had tried anti-virals with limited success.

    In 2006, I had enough and needed to make a change. So I went to a FFC clinic after reading about one person's experience at a clinic. He was being treated for Gulf War illness (GWI). I knew that the both GWI and CFS/FM shared some of the same symptoms.

    As a routine part of the FFC testing protocol, I got a Lyme test. First the Quest Western blot test and then the Igenex Western Blot test. My Quest test showed one positive band. My Igenex test showed even more bands. I never had the Elisa test which is part of the CDC's 2 tiered testing protocol.

    In order to test positive for Lyme disease, one must have 2 positive tests. This is currently the only disease that I can think of where not one but two tests need to come back positive in order to get a diagnosis. Far too many people get a negative test and believe that Lyme is not an issue for them. That is the nature of the controversy.

    I was told by the clinic nurse and the center manager that my test for Lyme was positive even though the test said negative. I didn't realize the test was open to "interpretation". The doctor sent me a two page letter that said I was negative.

    I didn't think that Lyme was an issue for me until someone on this board gave me more information. This person got the exact same letter from the same FFC clinic doctor telling her she didn't have Lyme either. This person and this info changed my life.

    I sought out the help of a LLMD or lyme literate medical doctor from out of state. After 7 trips to Detroit, my husband was not thrilled about changing doctors midstream. I also tried my 5th endocrinologist, one who is a pediatric endocrinologist who specializes in growth hormone treatment. I was found to be deficient in growth hormone. Plus I also found a classic "fibro" doctor. In other words, I got a medical team of experts who looked at my labs from the FFC and knew what to do with me.

    The Role of Growth Hormone Deficiency in Chronic Illness

    http://www.worldhealth.net/news/the_role_of_growth_hormone_deficiency_in/

    Bottom line, I got better. Not just a little bit better. Dramatically better. I'm 98% better than I was before. I do not have the mind numbing bone brutal fatigue anymore. I do not have pain all over. My libido recently came back and I'm not currently supplementing with estrogen and testosterone.

    My path is not right for everyone with CFS, FM, MCS & Lyme. My protocol is expensive but it works for me. I got my life back. We are currently planning another cross country motorcycle trip.

    Read read, read and then read some more. Inform yourself so you know what to ask your doctor. That old saying knowledge is power is true. Question your treatments. Question your doctors. Get some extensive testing like they offer at FFC then finding a doctor who will help you instead of learning to "live with it".

  12. Tizz

    Tizz New Member

    I've been tested for it repeatedly -- always NEGATIVE.

    But I might have CFS/ME, undiagnosed.

    As most of us realize, fibro and CFS do tend to go together . Of course, fibro also sometimes goes together with hypothyroidism, Reynauld's syndrome, hypoglycemia...

    Tizz

  13. karynwolfe

    karynwolfe New Member

    It certainly would be frustrating to be told that all cases of FM are Lyme, that FM can't possibly exist on its own... Because of course it can! It just needs a trigger and lots of different things can cause it.

    You can have FM and M.E. and Lyme all at the same time. They're all different and having one doesn't cancel out the possibility of having the other. Myself and a few others on the board want people here to know that the tests for Lyme are TERRIBLE and a negative blood test means absolutely nothing; very few listen when we say that.

    My personal message is that, it doesn't matter if you have ME or FM or whatever combination of illnesses brought you here, when you have the immune system most of us do with FM, as victoria mentioned, things take advantage of you. Lyme happens to be one of them.

    I would NEVER imply, however, that every case of FM is Lyme. That's not only poor judgement but just bad science. No more than I would that every case of MS is actually Lyme, etc etc... But it does turn out, that some of them, are, and even if I annoy passers-by on the way to talking to those people, it's completely worth it.

    I found out I had Lyme from this board. It doesn't change the fact that I have M.E., or that I had FM for four years (caused by the M.E.). But it does help me immensely to treat opportunistic infections that were slowly killing me.

    Certainly people won't mind ignoring the Lyme posts, if it reaches someone who DOES have it, and it changes their life for the better? That is what these forums are about. That's how I see it.
    [This Message was Edited on 08/13/2010]
  14. gapsych

    gapsych New Member


    I feel comfortable that I do not have Lyme as per my PCP who is science based.

    Anyone who may suspect they have Lyme will want to carefully weigh all the information available.

    Here is more information.

    Information is good but all sides need to be looked into.

    http://www.idsociety.org/Content.aspx?id=16556

    gap
  15. mijanou

    mijanou Member

    Karewolfe,

    I agree with you that if we have opportunistic infections due to a dysfunctional immune system we should investigate every possilbe angel.

    Are you saying that Lyme is an opportunistic infection or the root cause of your illness?


    Mij

  16. glenda2

    glenda2 New Member

    i am not sure who you are talking to but i do not have lyme...i know some do have both & i think all should find out if they have it or not.

    but for somone to say all people with fm has to have lyme is wrong..i have been tested over & over,...i do not have it....so i don't think someone should tell me i have to have it because i have fm....

    yes some do...i do not that is all i am trying to say but i think others are reading more into it then that.. all i am saying is not all fm people have lyme & some people will just not give it a rest telling us we have to have it because we have fm...

    some do have lyme but not all of us...

  17. Janalynn

    Janalynn New Member

    I will go out on a limb and say that more people understand what you're saying than you think.

    Many of us have read on this board that FM cannot be a diagnosis, but only a symptom.

    Every new poster gets the 'talk'. Sometimes I think it creates more confusion.

    My humble opinion..

  18. glenda2

    glenda2 New Member

    you are probably right...& it does cause confusion....i was just trying to make a point that not all have to have lyme...and some just insist we do...not everyone insist we do & i can handle that..i just get upset at those who do insist we must all have it..

    for those who think i am complaining about the lyme post.......
    i am not complaining about the lyme post on here at all,,,i am complaining about the people who say we all have to have it,,,this board is so we can all get help....so post about lyme i do not care...just don't say we all have it.[This Message was Edited on 08/14/2010]
    [This Message was Edited on 08/14/2010]
  19. gapsych

    gapsych New Member


    I could not agree with you more.

    gap
    [This Message was Edited on 08/14/2010]
  20. karynwolfe

    karynwolfe New Member

    I'm saying that for most people, even if they do get Lyme exposure, the immune system can beat it away because only a few strains of Lyme become a chronic, disabling condition. But for people with M.E. that have immune dysfuction, or others with a supressed immune system (maybe due to immunosupressive therapy that a lot of people with autoimmune conditions are required to be on, etc), any pathogen we get has the potential to cause terrible longterm consequences and ongoing infection. Especially infections like Lyme, bartonella (cat scratch disease), mycoplasma, strep, that are well known for causing unusual presentations in people whose immune systems are not normal.

    I got M.E. about a decade ago, and just about everything I get exposure to now, hangs around, because I can't get rid of it. M.E. really is like AIDS... Lyme was one of the things I've picked up within the past few years. :(


    And glenda, again, I agree, it is not right to say that all people with FM must have Lyme. I hope those who are accusing people with FM of this, will find enough balance NOT to be so overbearing in their plight to help.