Lyme or FMS or ?

Discussion in 'Fibromyalgia Main Forum' started by herbqueen, Nov 7, 2006.

  1. herbqueen

    herbqueen New Member

    I'm so confused. After 8 years of managing FMS which started 6 months after a whiplash accident, I am now rethinking on whether I have Lyme or FMS. I recently was diagnosed with optic neuropathy in one eye and after 4 1/2 months my vision has not returned to normal in that eye. Then BOTH eyes started hurting. I'm light headed all the time (didn't have that before), can't sleep at all(was able to sleep the last 4 years on my own util now), muscles jerking/twitching. MRI was normal. IGENX Lyme test came backpositive for long term Lyme exposure ( according to IGENX criteria not CDC for Lyme). So it this really Lyme? So many others test positive for Lyme that have parkinsons etc? Is it the chicken or the egg thing. Is there any agreement on this forum ? Do we all have Lyme that is not diagnosed or is this just the next big wave of thinking which is wrong? Treatment for chronic Lyme is also very confusing with no clear cut answers. I'm confused since my Mom also has many of the "FMS " symptoms and the whole family connection. But, no eye issues with her. Eye stuff does show up in Lyme disease..which started me down the whole Lymepath. Otherwise, I would never have considered it. What's everyone line of thinking? I'm scared to rush into long term antibioics and effects on my body . Lots of alternative treatments out there including Zhang Chinese medicine treatment...but with eyesight at risk....
  2. victoria

    victoria New Member

    People here are split on opinions just like real world.

    All I can tell you is I saw my teenaged son become ill with same symptoms as me re CFIDS, but then went on to get the FM pain... after all his regular blood tests came up 'normal' and the internist had no idea but agreed there was something wrong, I had him tested for Lyme.

    He came up CDC positive twice in 6 months... has been under treatment by a LLMD for past 18 months, regularly herxing... has had it a good while, we figure at least 5 years. By the way, there are over 100 varieties of Bb here in USA alone, so which abx work may differ accordingly. Plus there are common co-infections for which the tests are even less reliable. From his reaction, we figure he most likely also has bartonella.

    There are other stealth pathogens llike mycoplasma and cpn (chlamydia pneumonia) that can also cause problems similarly...

    Unfortunately no test is very reliable for any of these... even the CDC says a doctor should rely on the 'clinical picture'... and the research is there on all these things.

    Check out the Lyme message board here (click on 'message boards' up above), and also do a search in the "Library" up above on all these organisms;

    also check out ilads.org, and there are other good informational lyme links there.... it will pay to self-educate about Lyme and these other stealth pathogens.

    Hope this helps, there is a lot of info out there and here...

    all the best,
    Victoria


    [This Message was Edited on 11/07/2006]
  3. mollystwin

    mollystwin New Member

    If you have a positive igenx test, then I would say you have lyme. But I do not beleive everyone with FM or CFS has Lyme. I think we all have some type of pathogen, not just lyme.

    I think those with compromised immune systems are more susecptible to illness from these pathogens including lyme. Maybe others are exposed to lyme and other bugs, but do not get ill like we do? Just my opinion.

    My sis thought she had fibro for a year and is now being treated for lyme since Feb. She is doing much better.
    Good luck to you!!
  4. Chootik

    Chootik New Member

    Well I totally understand how you feel. This DD is really hard to deal with and it seems every day something new pops up.

    In my opinion, if you tested + on the IGENEX Test then that is pretty good indication that you have it. The best thing to do is to find a Lyme Literate Doctor, pref. LLMD and go see him with your test results. Given the test results and the symptoms you are describing, it sounds like Lyme. But again you need to be seen by a literate Doctor.

    Also keep in mind that now there are more and more herbal remedies that you can start off with and see if they help you. Just a few are "Samento", "Cumanda" "Burbur" and a whole bunch more. Of course there are no guarantees these will work, but you can give them a try and so far it seems they don't have any sideeffects.

    Also do some reseach here and on Curezone or other Lyme websites and educate yourself. Then see a doc and keep us posted on how you're doing.

    Chootik