fibromyalgia could be Lyme disease

Discussion in 'Fibromyalgia Main Forum' started by MaBear, Sep 5, 2003.

  1. MaBear

    MaBear New Member

    I recently posted on this site-Aug 12 I think-- stating that some fibromyalgia could be Lyme-- I was diagnosed for some years( with RA before that) with fibro. I just got the results back from my western blot and I am positive for Lyme!! Probably never had RA or fibro. My Dr -Charles Crist in Springfield Mo says 90% of patients he sees previously diagnosed with fibro test positive for Lyme!!!! I am now on meds for Lyme and am responding to treatment. On the web site about chronic neurotoxins by Dr. Richie Shoemaker MD you may learn more about toxin-mediated illnesses-- Lyme being one along with FM, CFS ,sick building syndrome-- and others-Dr Crist is very fussy about what lab does his testing for Lyme He says there are too many false negatives. -- and some preliminary tests-- such as the Elisha are not always conclusive !!I URGE YOU ALL TO READ "DESPERATION MEDICINE BY DR. RITCHIE SCHOEMAKER.-- READ THE ARTICLE ON THIS WEB-SITE BY PATTI SCHMIDT ABOUT NEUROTOXINS.(it's free) there are only about 27 doctors in the country who are "Lyme literate"and familar with this protocol..Please contact me if I can help. MaBear

    [This Message was Edited on 09/13/2003]
    [This Message was Edited on 09/13/2003]
  2. aaron19

    aaron19 New Member

    but where can i read about the "desperation medicine"?

    and what is it??


    ---Aaron---
  3. kjan9

    kjan9 New Member

    Yep sure did maBear! That's all I've done so far. It seems that I may have been ruled out for that some years ago. But the doc here had me do this and I need to get back to him ASAP. It does'nt seem that it could be that accurate. The computer test and all but I'm a skeptic. It's a world that you have to be. I do beleive fibromyalgia exists. But there may be more than one cause. CFIDS is another disease that really had me going, so many theories on cause and treatments. The same doc. very reputable had me tested for Stealth virus in 1998. Tho it appears the doc proved it existed he also lost his license, another story in itself. I was wondering why I hadn't been getting my posts then discovered the e-mail me button on the bottom of the page after I wrote the post!! But did'nt use it before when the others came up on my profile page! Don't mean to be jumping around with my subjects!
    Please let me know ASAP what treatment you were given for the Lime's and if you know if this is the standard for all neurotoxin positive patients. It may be a while before I can see the specialists. Oh and the full outcome, details ect. I've had FIbro/cfs a loooong time. Full disability over this stuff!!
    Karen (kjan9)
  4. aaron19

    aaron19 New Member

    isnt lyme's disease uncurable after a certain amount of time?
    and can you tell me most or all of your symptoms so i can see if i am in relation to what you went through?
    i honestly test negative for everything!! so the doctors says, " oh well uhh besides 'fibromyalgia' you are extremely heathly"
  5. Ahorsesoul

    Ahorsesoul New Member

    I was treated for FM using Dr Shoemaker's suggestion of trying Questran. I could tell improvement in less than two weeks. The first thing I noticed was that I could roll over in bed and not be in such horrible pain. I have now been on it for two months. I feel like a new person. There are so many improvements, I still have FM symptoms but they are greatly reduced. Improvements I have noticed: less pain in my joints and muscles, more energy, I am sleeping better (have slept several nights without waking just this week), less fibro fog, better memory, clearer thinking, bladder is no longer irritable, I AM NO LONGER DEPRESSED!, panic attacks are very few and are getting milder, my eyes are no longer sensitive to light (in fact I no long need sunglasses even in bright sunlight and night vision is great. I have taken the VCS test several times, flunked before the Questran and this week finally passed it! I have done this test on the computer and also in the doctors office with the real equipment and it seemed the same. I suggest trying the Questran. It is a prescription but does not enter the blood stream nor is absorbed into the body. It has been around for 20 years and has few side effects. I only tried it because a friend had such good luck with it. Wish I had heard of it years ago! This stuff has returned me to the land of the living. No one has to suffer with FM anymore. I did not have lymes but it is a treatment for FM. Most of us are not MIS-DIAGNOSED.
  6. GooGooGirl

    GooGooGirl New Member

    Please tell us what your symptoms were. I asked my doctor about Lyme Disease just the other day and she said definitley not, that would effect mainly your joints and most of my pain is muscular.
  7. jat

    jat New Member

    Hi,
    I'm fairly new at this so .... I hope you get it.
    Is this Qustran an over-the-counter thing, or do I go through my doc? And what is this vcs test you all are talking about? I want to play (unless it hurts - which most things do). I think we do have a Lyme problem down here in rural Utah, at least we used to treat our dogs for it. I want to feel better too. Is there a website I can go to learn more and take this computer vcs test?
    Thanks!
  8. dontlikeliver

    dontlikeliver New Member

    Hi,

    Just thought I should clarify one thing - Lyme Disease does exist in Europe and in the UK. It is massively underdiagnosed however, due to ignorance among medical professionals and the public at large.

    Even if they do suspect it, I suspect the tests on the NHS are as good as useless.
  9. klutzo

    klutzo New Member

    Ticks do not bite only middle-aged females 90% of the time. Ticks do not bite people who never leave city high rises, but plenty of them have fibro. Post-Lyme syndrome is similar to FMS, but it does not work the other way around.
    Klutzo
  10. DTJ6PPC

    DTJ6PPC New Member

    I too have been on the Questran protocol for the last 3 weeks after having followed Ahorsesouls posts.

    I also failed the VCS test, have many of the typical CFS sypmtoms (see profile), and have been exposed to many situations that might have lead to certain neurotoxin infections.

    Unfortunately, I have not received any benefits from the Questran protocol, nor have I had any ill effects.

    I am very glad that I did undertake the protocol in that it is one of the few medications outside of targeting antibiotics and chelation therapies that is a source cure as opposed to a symptom relieving medication.

    Questran and its supporting meds seem to be relatively safe compounds normally used for cholesterol lowering properties. The only downsides are the potential for constipation and the large amount of daily dosing of a distastful medication necessary to achieve proper saturation levels.........Don in Redondo

  11. DragonBall

    DragonBall New Member

    i do hope u were joking,i and many others do have fibro and live in constant pain.its no good quoting docters names that just want your money to me.this is a fibromyalgia and chronic fatigue site so go somewhere else with your narrow minded opions,im english and we speak our minds!
  12. soozbee

    soozbee New Member

    I had to have a tick removed from my head 35 years ago. I now have what is believed to fibromyalgia. Is it possible for it to stay in your system for this long a period of time? Does anyone know the duration of this disease and can it be recurring?
  13. dontlikeliver

    dontlikeliver New Member

    Here is a link that a UK doctor who's currently researching this matter sent me. Read it and then decide if CFS could in fact be one of a number of chronic, unexplained illnesses caused by a chronic borreliosis infection (that is not just Lyme's Disease as there are many strains of borrellia).

    According to the scientists who wrote the paper, borreliosis can be congenital OR aquired through tickbites, and my impression from the paper is that perhaps it is congenital at least half the time. So, if that is true, we do not know if we have had a tickbite, or
  14. dontlikeliver

    dontlikeliver New Member

    But, now it is going to be compacted!
    1.Negative Lyme's test does not equate to no chronic borreliosis infection.
    2. According to those who wrote the Harvey paper, you do not have to be bitten by a tick to have chronic borreliosis - people can inherit it through birth (like animals apparently).


  15. MaBear

    MaBear New Member

    I am presently on Flagyl for the en-cysted sprochete of Lyme-- later I will add Zithromax and much later the questran which helps get rid of the toxins. there is on -going research into the possibility that only some people get the chronic Lyme because pf a genetic pre-disposition.
    also-- as I read more of Dr. shoemaker's book he deals with chronic fatigue and fibro-- he seems to think and his patient experience proves to him that those two ailments are caused by a person's body making it's own toxins-- and again the Questran helped clear the neurotoxins.Ma Bear
  16. MaBear

    MaBear New Member

    Hi-- desperation Medicine is a book by Dr. Richie Shoemaker and is available from-- I got it from amazon.com-- it deals with all toxin-mediated diseases including Fibro- Chronic fatigue Lyme -sick building syndrome- blue-green algae poisoning etc . there are only 27 doctors across the country who are knowledgeable about his protocol. I go to Dr. charles Crist in Springfield Mo and he treats for Fibro also. Lyme can be chronic for years but can be cured.--I hope since that is what I have had apparently for 39 years.Dr. Shoemaker had impeccable credentials. He is a graduate of Duke Univ and was chosen "Family practice doctor of the year" in 2000.I urge anyone with any of these toxin-mediated illnesses to read his book.==Perhaps you could get it in some libraries. Ma Bear
  17. MaBear

    MaBear New Member

    Most of my pain has been in the muscles-- but as you know with Lyme it imitates many diseases-- including FM. I have experienced all the Fm syndromes which is why I guess that I was diagnosed FM in 1988. we have determined that I probably got Lyme in 1964 in Conn. when I lived there--and was diagnosed as RA which I do not believe I have--Ma Bear
  18. CreateHope

    CreateHope New Member

    I got so excited when I read your post...I just ordered Dr. Shoemaker's book. I too got it off of amazon.com. My local bookstore told me it was out of print. So I guess I got lucky. I tested positive for the VCS test on that website, and am waiting to see my doctor about it.

    What is the SPECIFIC TEST FOR LYME? I was tested for it (blood test) 2 years ago, at the supposed dx of FM.
    Great for you! For more about me, read post Visual Contrast Sensitivty Testing. That will tell you where I'm at.
    THANK YOU! And I will go read what Patti Schmidt says about neurotoxins!
    Kate
  19. IndigoSC

    IndigoSC New Member

    I actually was so lucky enough to have had 7 ticks on me this summer (worked outdoors mostly in another city) but none of them were the kind that carry Lyme Disease...I hope....but anyway, I've had fibro for 5 or 6 years and this past summer was the first I'd ever gotten a tick on me...
  20. kerrymygirl

    kerrymygirl New Member

    I prob. got bit in mid 80`s. In hospital for meningits/prob.lyme/ Doc`s all scratching their heads on the stange type of viral meningits I had. We were on vacation in fl.,camping deer came up to my daughter and I we petted. She ran high temp. for 2 days then ok. No flu or cold etc. We both came home with alot of bites, we react heavily to mosquito`s, in my gut I felt something more was wrong. I never was well again and slowly went down hill. 10 yrs. later a rheume tests for lyme came back positive. He said not positive enough to report to CDC. 2 other elisia and western, when Amer. med labs reran came back poss. Then some neg later.

    The chetes can hide quite deep in tissue, I worked with Bowen labs. There are only about 3 labs that know what to look for in US..Dr. W. ordered new scope and saw these buggers mutating. They can run and hide deep in frontal brain, not all lyme is arthritic. Neuro lyme with all our symptoms is quite common. Dr. with Bowen beilieves she was bit at 7yr. old now. She is in 70`s. Still being treated for lyme and relapsing. My daughter almost 30 is now showing all the lyme signs.

    So it can hide until a stressor like any other illness even cancer will rear it`s ugly head if you have predesposition and carrying in system. Just like shingles, we all carry strep,staph,cancer cells. Then something happens to react it.

    I am not sure about lyme and fm being 1 of the same even though Bowen says almost all her fm peoples test have shown lyme.

    On the lyme board I do not see the intense type of pain and fatigue most all share here. Now we could just all have co-infections since all these new syndroms are poping up.
    Remember fm/cfids day is linked with Gulf War since our symptoms are so close.

    I do notice very few on lyme board believe in fm. They should know not to prejudge either. Since so many have been misdiagnosed and know how it feels to not be believed.

    It is all still a mystery to most including poss. cures.