How many of you were diagnosed with CFIDS, CFS, FM, MS, or LUPUS

Discussion in 'Fibromyalgia Main Forum' started by EricaCFIDS, Jun 6, 2008.

  1. EricaCFIDS

    EricaCFIDS New Member

    and have done the Western Blot testing through IGENEX out of curiosity, received a "negative" result but still improved on ABX? I think this is an important point, because all of my testing was "negative" but clinically I responded extremely well to treatment with ABX. All of these individuals like me, are not statistically counted anywhere in the medical world, when they most likely have lyme. Also, I wonder if some type of ABX treatment would help those with CFS/FM?

    I am one of those! Are you? I received 6 "negatives" from IGENEX (3 Western Blots a year apart - although I had significant activity on specific bands for lyme - plus 3 co-infection tests). However, I recently took Doxycycline for one month and had an amazing response! I think there are MANY MANY people who fall into this category. Did the ABX treat the lyme for me, viruses, a combination?? I don't know yet for sure, but for those who think everyone receives an easy "positive" result on these IGENEX tests, that is not so.

    One thing for me as well, is I have mentally noted in the past that whenever I took ABX I noticed something interesting. Many times I felt worse, but I always got a nice "lift" afterwards. I had a strange desire to take ABX! Has this happened to you? I know certain ABX kill lyme, but most likely also address co-infections, certain viruses and more issues that are associated with CFS/FM. Many times with CFS/FM we suddenly feel better for no reason, then worse again. It's incredibly discouraging. Did you take ABX for a sinus infection maybe and didn't put the two together? This has been a regular occurence for me.

    I have tried more treatments than I can possibly list for my CFIDS, spent more money than I care to mention, this has gone on for years for me, yet one month on Doxycycline and I feel like I haven't felt in decades. Hmmmm.....

    Something to think about! I thought I would share this epiphany! I'm open to anything at this point. I've suffered enough!

    All the best,
    Erica
  2. TeaBisqit

    TeaBisqit Member

    When I first got sick, the doc stuck me in the hospital on IV antibiotics. They started to clear my brainfog. It was some kind of liquid Cephlosporin/Keflex thing. But my insurance ran out and they literally threw me out of the hospital before the treatment was finished. And my illness went chronic from there. So to this day, I have no way of knowing if I had been on the the antibiotics longer, if I would have been cured or what.

    I was bit by ticks when I was eight years old, way before anyone knew about Lyme. So, definitely, some of my illness is Lyme. But I caught something in 91 that gave me full blown CFIDS.

    I've basically been diagnosed with Advanced Lyme, CFIDS and overlapping Fibro. Plus Hashimoto's and Polycystic Ovarian.
  3. EricaCFIDS

    EricaCFIDS New Member

    Wow! I would wonder too. Have you done any longterm ABX treatmnet since? It must be lyme.

    My LLMD says it is classic lyme to have the onset of Hashimoto's. Then what follows is hormonal imbalances, which leads to adrenal issues, which lowers the immune system, which opens us up for reactivating and/or acquiring new viruses which gives us full blown CFIDS/FM. It's a vicious horrible cycle. Without treating the lyme, we are nowhwere.

    I hope you are able to improve on all of these things.

    All the best,
    Erica
  4. spacee

    spacee Member

    I was diagnosed with Lupus by several docs but then it was changed to CFS.

    I have only shown improvement while on the Marshall Protocol which uses Benicar to bring down the inflamation and then starts with Minocyline (low dose). I would herx and have a die off.

    Why do I not do the MP. You have to keep in the dark, wear dark clothing going out, hats, gloves and special sunglasses. My family wanted me to stop it...plus we were doing some remodeling that required me to do the leg work.

    So now I trudge along with Transfer Factors that cover viruses, lyme and mycoplasms. I would like to be better but I can give an pretty good imitation of normal with meds...for a few hours.

    Spacee
  5. TeaBisqit

    TeaBisqit Member

    I've been on many antibiotics over the years. Nothing has helped. Two years ago, I tried Xithromax for several months. All I felt was about five percent better. And the side effects weren't worth it. And it took a few months on it to even feel that. I think the damage to my immune system is probably irreparable at this time. It's possible an immune booster would help, but they won't release Ampligen.

    I don't believe it's solely Lyme in my case. I had a few immune system hits. I believe I got something that did this to me. Some infectious agent that is either still present or came, did the damage and went.
  6. annade

    annade New Member

    Erica,

    So glad to read your post and that you are feeling much better after the month on doxy. I wasn't clear as to whether you definitively have Lyme or is the vedict still inconclusive. Either way, glad to hear the treatment is working.

    I, personally, have always felt horrible while on ABX and never had the "lift" feeling you were talking about. Wish I did! What I have positively responded to is Diflucan and although I feel worse for the first week, I usually feel much better for the time I am on it and am following a strict no sugar diet (hard for me to do).

    Right now I am working with the CFS doc in Encinitas (Dr. Gersten). I am still waiting to hear back from all the lab tests I recently took. I should hear back in the next two weeks. I am eager to find out what was "discovered" and what we can do to try and correct the deficiencies. I'll keep you posted.

    Deanna
  7. Marta608

    Marta608 Member

    First of all, I'm impressed and in awe of the medical help and support you've received! Here in Michigan one doctor looked at the dx. of CFIDS and actually said scornfully: What is it that you think I can do for you?? Emphasis on the I.

    Of course one of the many theories about CFIDS involves bacteria within the cellular wall - and still others that would make an abx beneficial. I once nagged a script for one month of Valtrex from a doctor and felt better at first. But after three weeks, I could feel myself sliding back to the beginning.

    I dunno what the answer(s) are. I only know that while most of us share many of the same symptoms, we're all different in what helps and what hurts. It's a lonely, individual journey.

    Good luck to you. I hope you're one of the ones that an abx cures. Oh, and yes. I had a negative finding for Lyme through Igenex.

    Marta
  8. cherylsue

    cherylsue Member

    I've been a poster here for over 7 years. I had remitting/relapsing CFS, but was diagnosed last October through the Igenex western blot with borreliosis (Lyme Disease). It's not an easy recovery with antibiotics, and I may have some coinfections. AFter trying a few ABX, doxycyline gave me the most dramatic improvement in days at 200 Mg twice daily. It cleared my fried brain, and made my moods more even.

    I'm still battling fatigue, flulike malaise, and burning skin, but I am functional enough to get out of the house, go out to dinner with hubby, and socialize briefly with friends. I was housebound before.

    Having a diagnosis of CFS gave me no hope. Knowing I have Lyme gives me more options and hope that I may put it into remission. Many of the treatments for CFS are the same for Lyme, only Lyme uses more abx.

    I am a work in progress.

    CherylSue
  9. EricaCFIDS

    EricaCFIDS New Member

    I'd like to respond more, but I have the flu and can barely sit here reading!

    I'll write more when I'm up to it....

    All the best,
    Erica
  10. mariellenl

    mariellenl New Member

    I apologize, but being new to this board all of the abbreviations are making my fogged brain feel like it is going to go over the edge.
    Thanks,
    Mariellen
  11. tansy

    tansy New Member

    tested negative: he had the classic Sx and rash but 2 tests said no lyme disease. Fortunately the two doctors treating him since the tick bite knew the tests were not very reliable; he was given doxy immediately. These doctors were GPs not LLMDs.

    tc, Tansy
  12. victoria

    victoria New Member

    That's great the GPs were smart enough to treat immediately, it is supposed to BE a 'clinical diagnosis' as no test is 100% for infections.

    I know many docs around here who are smart enough to treat based on symptoms and usually don't even test as it runs the cost up for everyone. .. but of course those then go unreported, so it's officially "rare" in the state of Georgia.

    I was reading bevy2most's posts on the ChitChat board here about both her son and sister getting the bulls-eye rash, flu symptoms, etc just this past month, both are in US military in Virginia and NC(?).

    Quite a difference imho in their treatment tho - the son was given 100 mg doxy X 4/day, the sister was given 100 mg doxy time release X 2/day. The son was tested (tho not sure with what test) and was positive; the sister was not, it was 'assumed' that it was lyme.

    The one thing in COMMON was they were both rx'd 6 WEEKS of doxycycline, something the IDSA has tried to say is not necessary.

    I guess the military isn't falling for their "bs" 'guidelines'...

    So I'm curious how long your friend was treated for, and how he's doing since? Altho the long run is important, as it does often go underground and pop up later...

    the other confounding factor is that doxy kills more than the lyme - ticks are dirty and can transmit much more than lyme (a long list including bartonella, babesia, etc, for which tests are way less than 50% reliable);

    so, in fact one can have 1 or more infections without lyme itself. This could be another reason why a WB could be negative yet abx cause a herx.

    I wish doctors had more of an 'investigative' bent rather than the attitude of seeing as many pts/day as possible and writing off those they cannot help as psychosomatic...

    all the best,
    Victoria

  13. EricaCFIDS

    EricaCFIDS New Member

    Thank you everyone for your experiences and interest. This is a great post!
  14. Junegal

    Junegal New Member

    In 1.5 years. I cannot get out of bed without antiobitics. I keep going on/off of them.

    Been to 10 doctors. Got the CFS diagnosis 1 year ago. CFS should not respond to antiobitics, so I knew this just didn't "fit" for me. I have a constant sore throat, sinus infection. rEsponds every single time to antibiotics.

    So I requested a Lyme test 3 weeks ago and B-I-N-G-O! No wonder I respond beautifully to antiobitics. I have some major anger issues at the 4th opinion, highly regarded ENT doctor in NYC who literally threw the prescription at me yelling "this is the LAST antiobiotic you are getting from me" as though I was a drug seeker or something. Who would want to be on antibiotics unless they need them? Clearly he was a lame doctor and never put 2+2 together to realize there was a REASON I need them to get out of bed and swallow.

    I hope that the LLMD can provide answers and healing for me.
  15. tansy

    tansy New Member

    Hi Victoria,

    My friend had 4 weeks of doxy as soon as the rash appeared, just a few days after the tick bite. He made a lot of progress but was left with joint pain and his IS was stil skewed; he was told this was normal.

    Some months later he went down with pneumonia and was given an extended course of ABx; his joint pain went away and he felt a lot better.

    Now, about 10 months after the tick bite his immujne system has flipped again and he has Sx related to autoimmune like illnesses so he's back on an extended course of ABx.

    As a result of his infection he has some very specific congitive issues but not CFS or CF; he's been able to work for all but a few days.

    He's an avid researcher and likes having someone who knows about lyme to discuss his findings with. He is now looking into non pharmaceutical adjuncts to support the ABx and to try to prevent any further relapses.

    Not sure about co infections but I'm sure he knows enough to look into those if they're relevant. His GP willingly works with him which is unusual here as well as in the US.

    tc, Tansy
  16. Rafiki

    Rafiki New Member

    I have been researching Lyme and, since for many like you, it is a clinical diagnosis, I can't figure out how one would ever know whether they actually had Lyme or not.

    I posted the below question on another thread but will post it here in case you don't get back there. If you did, never mind :~)

    I have noticed that you are not alone and that a lot of people on Lyme sites (your 50% seems about right) test negative on all Lyme tests and have a clinical diagnosis.

    Since there is so much crossover in the clinical picture of ME, FM, Arthritis, to a lesser degree Depression, etc. and Lyme, and given that abx treatment seems to bring about improvement in many disorders including many well known auto-immune disorders, how does one really know what is being treated?

    I know you have an experienced doc. but there are many doc.s with as many years experience who would disagree with that Lyme disease can be diagnosed, with certainty, clinically.

    This is such a dilemma. I just wish that one of these conditions could be tested for with some kind of precision.

    I wish you great success with your treatment. ABX (long courses of Doxy) has helped me more than anything else.

    I wish us all some certainty in the future!

    Peace out,
    Rafiki
  17. tansy

    tansy New Member

    Source
    http://www.newswise.com/articles/view/542096/


    Discovery of Lyme Disease Bug Clone May Explain Disease Spread

    Benjamin Luft, M.D., Professor of Medicine, Stony Brook
    University Medical Center, and colleagues discovered that a certain clone of
    Borrelia burgdorferi, the spirochete that causes Lyme disease, appears to be
    the most common strain causing Lyme disease in North America and Europe, and
    may account for the increase in cases for the past 20 years.

    Their
    investigation and findings of the ospC-A clone are reported in the July 2008
    issue of Emerging Infectious Diseases, which is currently available on line
    at http://www.cdc.gov/ncidod/eid/upcoming.htm.

    According to Dr. Luft, Lyme disease is the most common vector-borne disease
    in the United States with more than 20,000 cases reported annually. While B.
    burgdorferi is the primary pathogen in the United States, clones of the
    pathogen are known to cause major disease.

    The ospC-A clone was one of the
    first strains ever identified.
    In “Wide Distribution of a High-Virulence Borrelia burgdorferi Clone in
    Europe and North America,” Dr. Luft and colleagues detail various methods of
    genetic testing of 68 B. burgdorferi isolates from Europe and North America.

    Based on the findings of their tests, the researchers concluded that the
    ospC-A clone dispersed rapidly and widely in the recent past and in both
    regions of the world.

    “I believe this discovery will make an important contribution since it
    identifies an identical and high virulence clone of Borrelia in both Europe
    and North America,” said Dr. Luft. “This may explain the recent spread of
    Lyme disease in North America.”

    The researchers report that the isolates of the clone were prevalent on both
    continents and uniform in DNA sequences, which suggests a recent
    trans-oceanic migration. More specifically, they explained: “The European
    and North American Populations of B. burgdorferi sensu stricto have diverged
    significantly because of genetic drift.

    Plasmid genes evolved independently
    and showed various effects of adaptive divergence and diversifying
    selection…genetic variation within the two continents contributed to most of
    the total sequence diversity, which suggests recent common ancestry,
    migration, or both, between the European and North American populations.”

    The research was funded partly by the Lyme Disease Association and the
    National Institutes of Health. Dr. Luft’s colleagues include: Wei-Gang Qui,
    Ph.D., and William D. McCaig, Hunter College of the City University of New
    York; John F. Bruno and Yun Xu of Stony Brook University; Ian Livey, Baxter
    Vaccine AG, Orth/Donau, Austria, and Martin M. Schriefer, of the Centers of
    Disease Control and Prevention, Fort Collins, Colorado.
  18. Rafiki

    Rafiki New Member

    Thanks for replying. I agree. I am being treated with Doxycycline and I advise people I know with auto-immune conditions to take a look at the research and talk to their doctors. There is some very interesting work being done. And, of course, for many of us with these contentious clinical diagnoses, there is the almost miraculous improvement on abx. I'm sure we'll know just how it all works one day but, as you say, for now it is enough to get better.

    Peace out,
    Rafiki
  19. monicaz49

    monicaz49 New Member

    Wow Erica...this is so exciting that you feel better. How improved are you from the doxy?? Im curious if you are continuing to take it or have stopped.
    I couldnt take doxy, it made me itch.
    Anyway, this is so interesting to me that you are responding to antibiotics. Did you feel initially worse on them or did you feel better right away?
    Thanks for sharing.