ILADS 2005: FM/CFS due to Lyme? How many have Lyme here???

Discussion in 'Fibromyalgia Main Forum' started by munch1958, Nov 7, 2007.

  1. munch1958

    munch1958 Member

    Jonathan S. Forester, M.D. is a leading practitioner and expert in working with patients who present with Chronic Fatigue Syndrome, Fibromyalgia, Yeast Overgrowth, and hidden Hypothyroidism patients.

    He is a member of the International Lyme and Associated Diseases Society (ILADS). This year at the ILADS 2005 Conference, I noticed that he was asking several very thoughtful questions after certain presenters, and I was lucky enough to sit next to him at lunch.

    As you can see, I was steadfastly taking notes as he was busy discussing treatment protocols that he has utilized with tremendous success with his clients in his practice in Louisiana. The inside scoop on Fibromyalgia was more compelling I ever imagined possible.

    Dr. Forester has written a wonderful book, "Conquering Chronic Fatigue: Answers to a Vastly Misunderstood Epidemic." I was fascinated in talking with Dr. Forester over lunch that after years of working with Fibromyalgia patients, he learned at a conference the Lyme Disease may indeed be the culprit.

    He began conducting Western Blots that he had analyzed by IGeneX, THE GOLD STANDARD IN WESTERN BLOTS FOR LYME DISEASE, and found that an overwhelming majority of his previously unresponsive Fibromyalgia patients were testing positive to for Lyme Disease.

    His patients subsequently experienced significant relief following combination antibiotic therapy or IV therapy for Chronic Lyme Disease. As you can see, I was busily taking notes on treatment protocols that he recommends for his patients.

    In response to such an alarming increase of Lyme Disease in his patients, Dr. Forester met with State and Local Epidemiologists to disclose his findings. They were so impressed by Dr. Forester's results that they decided to conduct a field study of Central Louisiana.

    The thing that is so wonderful about Dr. Forester is that upon realizing that Lyme Disease may have been causing Fibromyalgia symptoms in his patients, he found out the best tests to conduct (The Western Blot) and the best lab to analyze the results (IGeneX).

    Upon discovering his patients tested positive, he treated them with antibiotic regimens for late disseminated Lyme Disease. He actively called a meeting of epidemiologists and presented his results. As a result, his community is on board doing a regional study.

    He also wrote a paper to share with his colleagues about being more open minded about the impacts of Lyme disease as practitioners. Of course, as evidenced by his attendance at the conference and his insightful questions, he continues to stay up to date with the most recent and relevant research and treatment regimens.

    Source:

    http://www.strategic-living.blogs.com/livingwithlyme/2005/12/ilads_2005_fibr.html#more<br>[<i>This Message was Edited on 11/07/2007</i>]
  2. munch1958

    munch1958 Member

    For 26 years, I thought it was chronic fatigue. After two car accidents, I thought I'd just added fibro to my list of mysterious maladies:

    endometriosis, eczema, migraines, daily headaches, sinus problems, swollen lymph nodes, sore throats, IBS, ulcers, GERD, gluten intolerance, food allergies, asthma, joint pain, muscle pain, sarcoidosis, stiff neck, neuro issues and brain fog etc. etc.

    Shocking to find out it's been Lyme all along? I've been treating the wrong problem because I didn't want to take more antibiotics because of yeast issues.

    A big thump on the head to me and the 200+ doctors (who ought to know better) that I've seen over the past 26 years.

    Oooh, wait I forget -- I'm a hypochondriac or have
    Somatoform disorder! The number of times you've been told it's all in your head is directly proportionate to the number of years you've had Lyme.

    200 doctors/26 years = 7.69 doctors per year

    Entirely a realistic number since I've seen:

    3 GPs;
    4 Family Practice;
    8 Neurologists;
    1 Neurosurgeon
    3 Hematologists;
    7 ENTs;
    2 Clinical ecologists or environmental med docs;
    5 Endocrinologists;
    6 Rheumatologists;
    2 Psychoterapists;
    5 OB/GYNs;
    9 Gastroenterologists;
    1 Podiatrist;
    3 Pain management specialists plus
    12 Fellows studying the pain management model;
    1 Uro-GYN;
    7 Internists;
    2 General surgeons;
    1 Plastic surgeon;
    4 Pulmonologists;
    2 Cardiologists;
    1 Acupuncturist;
    2 Opthalmologists;
    2 Nephrologists;
    12 Critical care or ER doctors;
    8 Orthopedic surgeons;

    Plus far too many interns and residents to count during
    6 hospitalizations with the longest being 3 weeks.

    And the doctors who participated in the 13 operations. Can't tell you how many there were because I was asleep.

    And best of all is the "cake topper" one Neuropsychologist (who wanted to talk more about my husband's erections than my facial seizures and numbness). As in does he need Viagra?!

    If you have a crazy history like mine and are blaming inbreeding or bad genes think again. Lyme spirochetes have been found in breast milk, semen, tears and urine.

    Spirochetes have been found in mites, fleas, mosquitos, and biting flies. I'm not sure what "no seem em's" are or "chiggers" but I've heard they have spirochetes too.

    Now I see one really great LLMD that I wouldn't trade for all of the above. Maybe I'll live long enough to see a Geriatric specialist! <br>[<i>This Message was Edited on 11/07/2007</i>]
  3. mollystwin

    mollystwin New Member

    I have lyme. How many others here have it???

    I do believe the number is growing as the word gets out.

    dar
  4. bunnyfluff

    bunnyfluff Member

    First it was the undiagnosed Celiac's, weird personality changes, manic behavior (although I must admit, mania feels pretty darn good), blood transfusion, thought I had RA, told I had FMS. I had major problems with my knees aching as well as my hips~ the large joint pain should have given someone a clue!

    Then came inability to exercise any more, chronic EBV, massive migraines and horrible body sensitivity. That was CFS (yeah right). Sorry.... Lyme was to blame for all of this mess!!

    I was of the school that *I can't possibly have Lyme*. Well, I do, big as day. It took 3 Dr's to determine that for a fact! 2 of them LLMD's!!

    I had been told "there is nothing anyone can do for you~ you need to learn to live with this" when I had a CFS Dx! Well, I am here to tell you that I am getting better, I will continue to get better, and I will openly keep trying to help others get testing for this crud and improve as well.

    My best to y'all!

    Bunny



    P.S. A *no~see 'em* is just that....something you feel biting you (or you just get a bite mark) and it is too small to see what it is/was. :)
  5. bttaylor

    bttaylor New Member

    I was diagnosed with chronic fatigue in January of 2007 but have had it I feel since 2003. I have been going to the FFC outside of Seattle. I was tested for lyme by another doctor so the FFC didn't retest for lyme - which now I think was crazy. But finally they tested me twice now since I haven't been improving. The second test was the Western Blot and then sent to IGeneX. I haven't been to the Doctor to talk with her about results but she did start me on Azithromycin - 500mg. for 30 days. I don't remember being bit by a tick even though I was raised in northern Illinois and then lived 20 years in a wooded area outside Seattle. However I was bitten by several mosquitos right before I became sicker. So maybe that was the culprit.

    I would like to know what treatment method has worked for those of you who are getting better. I would be ecstatic to get my life back again- if this is what is causing my fatigue. Beth
  6. twitcher

    twitcher New Member

    I have never had a positive test but have FM and neuro symptoms, had the bullseyes, and I'm improving on antibiotics.
  7. victoria

    victoria New Member

    all I know is I herx on the Marshall Protocol the same as my son does to abx (he was positive 2X on WB even according to CBC's 'tracking/surveillance' standards);

    and we had many physical overlapping symptoms...

    the weird thing is that both of have never shown any abnormalities on the 'regular' blood tests ... he was not positive on any test until the WB.

    The CFIDS Chronicle is put out by the the non-profit CFIDS Organization (http://www.cfids.org/archives/chronicle-issues.asp) did a whole article on Dr. Joseph Jemsek and Lyme and CF/FM in their Spring 2005 issue, came out right after my son was dx'd. All the past archives are available at the above url.

    Interestingly, at least 3 of my local support group know for sure they had lyme in early 1990s, but no doctor has ever done anything about it since... most only got about 2 weeks of abx then.

    It is estimated that it takes about $65K for the average person to get a dx of Lyme, seems to be one of the last things thought of at least in the past. Many go completely undx'd as they can have psychological/psychiatric symptoms show up mainly...





    <br>[<i>This Message was Edited on 11/07/2007</i>]
  8. mollystwin

    mollystwin New Member

    Treatment for lyme usually is long term antibiotics. I have been in treatment for 8 months and feel better but not recovered yet!!

    Treatment is tough because of herxing (die off reaction), but gets easier over time.

    Different abx work for different people. I am on doxy now but was on zithro last summer. Sometimes the abx need to be changed due to one may stop working. Some also have had great success with herbals such as cumanda and samento.

    good luck with your diagnosis.

    dar
  9. Daisys

    Daisys Member

    I got classic CFIDS: the flu that never went away in 1978, with fatigue and long, long hours of sleep.

    It got gradually better until I was back to normal living, with a tendency to tire out often. This lasted for a few years.

    Then I got seriously sick (unrelated--or, maybe not?) in 1986, and relapsed. This time it was classic FM: tender points and vicious insomnia, with the brain fog, stiffness, bad mornings.

    Also, along the way, I was diagnosed with RLS, PLMS, MPS, gluten intolerance, and GERD.

    Finally, recently, I was diagnosed with lyme and now am being treated. It's good to know that all the acronyms I've collected thru the years come under the lyme diagnosis, and so hopefully will all go away eventually.
  10. DizzyS

    DizzyS New Member

    Has anyone who is recovering from Lyme able to take meds that previously couldn't? I'm very sensitive to meds and can't take many. If I was found to have lyme I don't know if I could tolerate long term abx. So far I can only take amoxicillan.
  11. herbqueen

    herbqueen New Member

    I was diagnosed with FMS in 1998 , 1 year after whiplash accident. My mother has had CFS/FMS symptoms for last 20 years , so I thought I had a classic FMS case. After first 2 years I improved with blood type diet (low carb) and immune supplements. 1 year ago diagnosed with optic neuropathy... which made me suspicious about lyme. Optic neuritis with loss of vision is not an Fibro/CFS symptoms! Zhang herbs for Lyme for 8 months/combined with Buhner for 2.. all hell broke loose with nervous system in summer. Thought I had MS and tested negative for that. g. Amish herbalist muscle tested me and claims I do not have lyme but chronic candida. I've done 2 candida cleanses/but he still claims that is it even though I have symptoms. I am hesitant about abx route, but may succumb. Right now on LDN and homeopathic Lyme kit. I'm slowly improving. If those who are improving can please state what they are doing in terms of protocol and if they know someone that has actually recovered on abx. Thus far I've not found someone to talk to . I am so chemically sensitive and have been sensitive to drugs my whole life that going on intensive drug treatment scares me. I have some seen on Buhner board who are in remission (some started with abx and switched to buhner). Others on Buhner alone.
  12. monicaz49

    monicaz49 New Member

    Igenex test = Positive
    3 Kaiser Elisa tests = negative.

    I know the whole story about the lack of reliability in the Elisa test and that Igenex is the Gold Standard. However, I also find it odd that every professional, educated and previously compassionate doctor I have seen regarding lyme looks me in the eye and tells me they are certain i do not have it.

    I can tell you Ive experienced probably more than 25-30 different symptoms, some which i cant even put into words they are so bizaar.

    I tried the antibiotic route but my liver wasnt having it. So I stopped.

    I personally feel my CFS has a genetic predisposition type of cause. I noticed a few quirks in my youth (sensitivities mild fatigue, hypoglycemia,) but it manifested itself terribly in my late 20s (after gallstone surgery, car accidents, pregnancy csections, and yes..even during a very stressful period). If its CFS Ive probably always had it..just not enough to notice early on. If its Lyme...I believe i would have contracted that also at a young age...but with so much physical/emotional trauma to the body my immune system managed to let it manifest itself full force.

  13. monicaz49

    monicaz49 New Member

    Igenex test = Positive
    3 Kaiser Elisa tests = negative.

    I know the whole story about the lack of reliability in the Elisa test and that Igenex is the Gold Standard. However, I also find it odd that every professional, educated and previously compassionate doctor I have seen regarding lyme looks me in the eye and tells me they are certain i do not have it.

    I can tell you Ive experienced probably more than 25-30 different symptoms, some which i cant even put into words they are so bizaar.

    I tried the antibiotic route but my liver wasnt having it. So I stopped.

    I personally feel my CFS has a genetic predisposition type of cause. I noticed a few quirks in my youth (sensitivities mild fatigue, hypoglycemia,) but it manifested itself terribly in my late 20s (after gallstone surgery, car accidents, pregnancy csections, and yes..even during a very stressful period). If its CFS Ive probably always had it..just not enough to notice early on. If its Lyme...I believe i would have contracted that also at a young age...but with so much physical/emotional trauma to the body my immune system managed to let it manifest itself full force.

  14. munch1958

    munch1958 Member

    Thanks for your replies!

    It sort of amazes me that people do no research into the accuracy of Lyme tests believing that ELISA is OK. The CDCs logic and two tiered testing is screwy. They see a negative and so does their doctor so it can't be Lyme.

    All of the LLMDs use Igenex but other doctors not only pooh-pooh the lab and the diagnosis too. Well come up with some other better explanation that fits every single symptom. Gee, can't they do that in the 6 minutes they allow per office visit?

    We have symptoms that can't be explained any other way yet they doubt the diagnosis. I'm tired of having to fight every single lyme ignorant doctor that I encounter. Why can't all of my medical issues be connected to ONE thing like a tick born illness?

    All one has to do is compare the other spirochete disease syphilis to see how the conventional docs are simply wrong. This bug is way more complex than syphilis and that confused the heck out of most of them for years.

    Some people claim they have no bands, herx like crazy on Abx or worse won't take them because of "candida" concerns. Candida doesn't cause a major personality change.

    My LLMD has said candida and borrelia camp out in the same cell which is why he prescribes Diflucan and Nystatin with the Abx. They learn to co-exist together. Wonder how
    hypercoagulation fits into the puzzle?!

    Candida & neuroborreliosis:
    www.immunesupport.com/library/showarticle.cfm/id/6431

    I'll take a diagnosis of Lyme with a chance of getter better over the life sentance of CFS and FM. Yes, I am getting better. Now that I've added heparin it's amazing how much better!

    The founding medical director of FFC, Dr Kent Holtorf has a really good Lyme page on his website. There is mention of supplements and herbs: http://www.hormoneandlongevitycenter.com/lymedisease/

    This is a good craft project. I taped these all to a piece of paper for demonstration purposes:

    To simulate a larva stage tick take one grain of black pepper.

    To simulate a nymph stage tick use one poppy seed.

    To simulate an adult tick use one sesame seed.

    CherylSue: There's no Lyme in Illinois so how come they've got this publication? and poster?

    http://www.idph.state.il.us/envhealth/pccommonticks.htm

    http://www.idph.state.il.us/envhealth/pdf/Tickpstr.pdf

    I saw the poster on a bulletin board in a bar near here this summer. The bar is part of a country club with a beach and playground toys.

    If you've got little kids in their bathing suits going to the recreation area by the lake then you'll see the poster inside the bar right? DUH - Illinois.

  15. munch1958

    munch1958 Member

    Since you think you were born with "it" have you ever considered that one of your parents was bit by a tick?

    Spirochetes have been found in fleas, mites, biting flies and mosquitos. Also in semen, tears, breast milk and urine.

    LD Ancient engine article:
    http://www.ilads.org/files/harvey.pdf

    Some people seem to struggle with Lyme more than others. I asked my LLMD about this. He thinks some people had hormonal deficiencies before the Lyme. This contribute to their inabilty to fight off the infection.

    In my case, I wonder about my dad in Guadalcanal during WWII. What else did he bring home besides malaria?

    I think the first time I was bit was in the Ozarks in 1969. But I wonder how long I've been low in growth hormone too. Some of the symptoms of AGHD are the same as Lyme so I'll never really know for sure.

    Have you tried the Cowden or Buhner protocols?





  16. redsox10

    redsox10 New Member

    My daughter became very ill at 14. She was diagnosed with mono to they didn't know and finally CFS by one of the top CFS specialists. Two years later after 3 negative Elisa's she was diagnosed with Lyme. looking back she had symptoms although she was functional for 4 years before she became extremely ill.

    She was slowly recovering form Lyme but had a serious crash last winter. Now on IV meds she is slowly making progress.

    My adult son was diagnosed with Lyme disease a little over 2 years ago. He showed symptoms for years. He was diagnosed with colitis, migraines, etc. He became extremely ill in summer of 05 with increase fatigue and started with psych symptoms (hallucinations, panic, paranoia) Fortunately we Knew this could be Lyme. He was diagnosed with Lyme soon after this and with only antibiotics and Babesia meds he has made wonderful progress. He is back to work full time, his colitis and migraines are gone.

    Dizzys.. in what way are you sensitive to meds? Lyme treatment might help this. Are you taking good probitiotics? They are essential with antibiotics. Are you seeing a llmd? (Lyme literate medical doctor)

    There is a new Lyme forum that just went up. If you google wildcondor lyme you will see a link. Already valuable information on this site.

    Remember Lyme is the great imitator
  17. mollystwin

    mollystwin New Member

    Doctors order these tests because they do not know any better. Most drs do not understand lyme.

    Monica- I had several doctors look me in the eye and tell me I don't have lyme just like you. Then I found one who told me I did. I have been in treatment for 8 months and I am recovering. I am doing things now I was unable to do last year. I have a way to go before I can call myself recovered, but I am doing so much better.

    I think you should reconsider your lyme diagnosis. I would hate for you to miss out on recovery.

    dar
  18. grace54

    grace54 New Member

    Good post. I have DR.Forester's book, one of my first on the subject of fibro/fatigue. He is a very spiritual, caring DR. and has helped many. I would like to have met him.)

    I am not convinced at this point if I have Lyme but I have not ruled it out and I am planning on having more tests done. I believe it is important to rule it out if at all possible as it is treatable. I am hoping someone will come up with some better testing in the near future.:)
  19. fmfriend

    fmfriend Member

    So what do i do. The Dr LLMD I was seeing was driven out of businss and I am so sick and getting worse every day.
    i ended up test posative for 5 tick born disease Full blown active present and having them in the past, MONO active full blown present and past,EBV, HHV1, HHV6 ect.. the list is too long to list.

    I had 25 collected ticks that I pulled off of me last spring. I had 5 rashes which I documented with pictures.

    I went to my PCP with a full blown out break rashes fever, severe headache,severe neck pain, major vertigo ( i felt like I ws on high seas..whoa) severe neurological symomtoms,facial numbness,major sleep distrurbance, spinal meningitis, full blown mono....needles to ay I was sick as h#@l and the DR never tested me for anything that day was just going to send me on my way till I said dont you think some Doxycyclyne would be a good Idea.. DUH!!

    So what do I do now> I need help so bad I need a LLMD who will treat me and in this land of DRs Raliegh NC there is no DR to treat me.

    I called Duke University and they said they wont treat lyme disease. Realy Im so 'ticked' Im ready to sue!!

    Im ready to call a LAWYER !! Im so sick and they wont help!!

    I need a LLMD!

    Can anyone help?

    Sorry if my thoughts are scambled but this is what Lyme causes thats why its called NEOURO-BORRIELIS ALSO.

    Blessings ~ Please help. Sally
  20. victoria

    victoria New Member

    there's a couple places to look for a LLMD, but bottom line is that you have to travel quite a distance to find someone competent.

    Look at the Lyme board here, I made a post not too long ago that gives a non-profit site where you might find one.

    Another way is to go to lyme flash net (google it), they have a section asking for referrals whereby people can PM you as many states are censoring LLMDs.

    It's interesting that when Dr. Forrester contacted the state of Louisiana where he practices that they actually wanted to DO something other than censure him...

    good luck. My son's doc was seeing people from all states of US and from even overseas, there are so few "good doctors" who know what they're doing or even know about Lyme.

    all the best,
    Victoria