anybody treat lyme and still not feel well???

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by babyk902, Jul 16, 2008.

  1. babyk902

    babyk902 New Member

    i am really convinced that lyme may be the root of all of my problems or maybe even the SOLE reason for all of my problems, i'm just curious whether or not anyones treated their lyme but still feeling really bad? I think that if i treated my lyme i would feel like a totally different person, maybe even my old self again
  2. bunnyfluff

    bunnyfluff Member

    I am feeling much better since treating lyme, but I still have a ways to go. I was sick a decade before anyone suggested lyme, and I got way sicker than I needed to.

    My cognitive abilities improved almost immediately, and I have much more energy and less pain than before.


    Some people on the other lyme boards have had basically full recoveries, or remissions.


    I am hopeful that I can be one of them.

    Bunny
  3. jbc66

    jbc66 New Member

    Several years ago when I first got sick, I was tested for Lyme and my Elisa came back positive. Was sent to an infectios disease specialist and Western Blot came back equivical. First I was put on four weeks of doxycyclene (I think that is the spelling) and got worse. Then they put me doxepin for the searing nerve pain and that's when I started getting better. A few months later, my insurance approved one month of IV Rocephin (I think that was the name of the antibiotic it was nine years ago!) The IV meds seemed to make me sicker. After I went off of them I felt better, but no better than I felt than before I went on it.

    I have a feeling that perhaps I had lyme and it triggered fibromyalgia. Back when I was being treated I used to read the lymenet boards and found that if you admitted you were getting worse because of the medication, others claimed you were "herxing" and in fact were killing the lyme disease. I don't think that was accurate in my case. I think I am very sensitive to medication and being subjected to high doses to antibiotics just made me feel like crap.

    I really think that fibromyalgia is caused by a disruption in the neurotransmitter system and that until we get those sorted out, we are going to have periods where we feel well and periods where we feel like crap. Right now I am in feeling like crap mode. Not as bad in the past because I am sleeping fine, but have got a lot of burning pain again.
  4. Forebearance

    Forebearance Member

    Hi you guys,

    Have you heard of the discovery that Lyme bacteria produce neurotoxins? It is possible that you could kill all the Lyme bacteria, but still have the neurotoxins hanging around, causing problems.

    Some people have a genotype that makes their bodies unable to excrete the Lyme neurotoxins in the usual way. Their bodies can't identify the Lyme neurotoxins as something that needs to go.

    They have to take stuff to bind with the neurotoxins and escort them out. Then they feel better.

    I got this info from "Mold Warriors". It's not only about mold.

    Love,
    Forebearance
  5. jbc66

    jbc66 New Member

    "Have you heard of the discovery that Lyme bacteria produce neurotoxins? It is possible that you could kill all the Lyme bacteria, but still have the neurotoxins hanging around, causing problems.

    Some people have a genotype that makes their bodies unable to excrete the Lyme neurotoxins in the usual way. Their bodies can't identify the Lyme neurotoxins as something that needs to go. "

    Is there any scientific basis for this assertion? I don't mean to sound bad, but there are an awful lot of people making an awful lot of money off of people with chronic pain. Who discovered these neurotoxins and what is the prescription for getting rid of them? Pricey supplements?

    I get frustrated because it seems like there are an awful lot of "practitioners" that provide dubious advice that serve to enrich them from book and/or supplement sales. What ends up happening is that those desperate for releif shell out what they can afford and then are no better off in the long run and that much poorer.

  6. richvank

    richvank New Member

    Hi, jbc66.

    The biotoxin issue in people with Lyme disease who have certain isotypes of the HLA DR molecules was discovered by Dr. Ritchie Shoemaker. I am personally acquainted with him, and though we have some differences of opinion, I can tell you that he is not a quack.

    As far as I know, the actual molecular structure of the biotoxin produced by Borrelia burgdorferi in Lyme disease has not been determined. I believe that the evidence for it is the response that these patients have to treatment with cholestyramine, which is an anion exchange resin originally used to lower cholesterol by binding to bile salts in the gut and carrying them out in the stools. The fact that cholestyramine treatment helps these patients, as it helps those with mold illness and certain other disorders in which biotoxins are present (pfiesteria, ciguatera and others) is evidence for a biotoxin in Lyme disease.

    Rich
  7. jbc66

    jbc66 New Member

    That sounds good. Can you point me to study that is not based on anecdotal evidence?
  8. jbc66

    jbc66 New Member

    And he was sanctioned for prescribing veternary medicine to human beings!!!!! How is that not quacky? That is really scary.
  9. Timaca

    Timaca New Member

    I started with a diagnosis of lyme disease (which I believe was accurate). I was treated with a lot of antibiotics, and improved significantly, but did not get well.

    I have since been diagnosed with HHV-6, EBV, HSV1, VZV and Cpn...(I had very high antibody titers to these pathogens).

    Valcyte improved me greatly, but I didn't get well. My high antibody titers for HHV-6, EBV and VZV dropped to normal.

    I'm now on doxycycline to combat the Cpn.

    I think it's possible to have more than one active pathogen making us ill.

    Best,
    Timaca
  10. zena01

    zena01 New Member

    Hi,

    please, if you think you may have lyme, go to some of the lyme sites and do some research on symptoms, (especially if you have a lot of the symptoms others seem to have, but are not listed in fibro symptoms lists)and learn about types of testing --you'll need to know what labs and what tests to ask your doctor for -- who will probably tell you "you don't have that, we don't have that here"

    I was origially diag with fibro 2004. Lyme Western Blot positive for Lyme and Babesia 12/07, started treatment with llmd 2/08. It was because of reading the boards here that I realized I needed tested and I am so grateful!

    The longer a person has had lyme, the longer it will take to get well I was told. I am not yet feeling any better although I know many are. (through history of illnesses and lifetime medical problems we think I have been infected for 35 years) And, unfortunately my LLMD says that I really do have fibro as well -- they feel that Lyme is ONE of the main causes of fibro -- And I was also told that I may still have some fibro related problems when we've cured the lyme -- and I am just hoping when the sick part, fevers, joint pain and swelling, and stuff that seems to be more lyme related is gone, that I will be able to deal with the fibro muscle pain and other issues enough to get my life back.

    I found the following about fibro in some lyme treatment paper when I was doing some research.
    _____________________
    Evidence-based guidelines for the management of Lyme disease.
    Fibromyalgia
    The outcome of treating fibromyalgia secondary to Lyme disease with nonantibiotic regimens has been poor. The most encouraging clinical trial showed success in only one of 15 patients and only modest improvement in 6 of 15 individuals with fibromyalgia despite 2 years of treatment.
    Antibiotic therapy has been much more effective than supportive therapy in symptomatic patients with fibromyalgia secondary to Lyme disease.
    Fibromyalgia treatment alone without antibiotics raises the risk of conversion to refractory chronic Lyme disease and/or exacerbation of an undiagnosed persistent infection and is not recommended. Increasingly, clinicians do not feel comfortable treating fibromyalgia in Lyme disease without antibiotics.

    Anyway, I'm hopeful that the treatment that I'm on will help me and am also hoping that it either also kicks the fibro or at least knocks it down so I get my life back.
    Take Care,
    Zena

  11. richvank

    richvank New Member

    Hi, jbc66.

    Here is an abstract of a published paper by Dr. Shoemaker et al. on treatment of combined Lyme and Babesiosis using a treatment including cholestyramine:

    Adv Ther. 2006 Jan-Feb;23(1):1-11. Links
    Atovaquone plus cholestyramine in patients coinfected with Babesia microti and Borrelia burgdorferi refractory to other treatment.Shoemaker RC, Hudnell HK, House DE, Van Kempen A, Pakes GE; COL40155 Study Team.
    Center for Research on Biotoxin-Associated Illnesses Pocomoke City, Maryland 21851, USA.

    Ten percent of US patients with Lyme disease are coinfected with Babesia microti. A double-blind, placebo-controlled, crossover trial enrolled 25 patients with confirmed Borrelia burgdorferi/B microti coinfection, abnormal visual contrast sensitivity (VCS), and persistent symptoms despite prior treatment with atovaquone and azithromycin. Patients were randomly assigned to atovaquone suspension or placebo plus cholestyramine for 3 weeks, were crossed over for 3 weeks, and then received open-label atovaquone and cholestyramine for 6 weeks. Symptoms and VCS scores were recorded at baseline and after weeks 3, 6, 9, and 12. Improvements in symptoms and VCS deficits were observed only after at least 9 weeks of treatment. At week 12, 5 patients were asymptomatic, and 16 had a notable reduction in the number of symptoms. The entire cohort demonstrated significant increases in VCS scores. Adverse effects were rare. Patients coinfected with B burgdorferi and B microti derive measurable clinical benefit from prolonged treatment with atovaquone and cholestyramine. Longer-term combination therapy may be indicated.

    PMID: 16644602


    With regard to the violation of FDA regulations you cited, obviously I can't condone doctors breaking FDA rules. I think it should be noted that the drug in question, staphage lysate, actually was licensed for human use at the time Dr. Shoemaker used it, but the licensee, Delmont, had not been producing it for human use for ten years. Using it for humans was permissible by filing a form with the FDA, which Dr. Shoemaker had not done, so that was a violation, but it's not as though this drug had not been approved for human use.

    One of the things that Dr. Shoemaker has discovered in mold illness patients is infection in the sinuses with multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS). I suspect that his motivation for use of staphage lysate was to knock out these antibiotic resistant infections.

    In my opinion, that doesn't make him a quack. He's actually a doctor with a lot of guts as well as being very creative and innovative. He has gone to bat in court on behalf of a lot of people suffering from mold illness because of the buildings they have to work in. He's also done what I consider brilliant research in biotoxin-related illnesses. As I said before, he and I have different views on some things, but no way is he a quack.

    There are a lot of doctors who follow all the rules but never stick their necks out at all to help people with the kinds of disorders we are dealing with on this board. Dr. Shoemaker is not one of those doctors. I can assure you that he does care about his patients.

    Rich
    [This Message was Edited on 07/16/2008]
  12. Slayadragon

    Slayadragon New Member

    Thanks for supplying the info on Dr. Shoemaker's work, Rich.

    As a side note, cholestyramine (the main treatment recommended by Dr. S for lyme/mold toxins) is an inexpensive generic pharmaceutical. To my knowledge, he doesn't sell any products to patients except for a nominal charge ($10) to take an online screening test for the presence of neurotoxins in the brain.

    I've not seen Dr. Shoemaker but considered doing so at one point. He sees patients from across the country, but generally has them see him for just one visit and then continue follow-ups with their regular doctor. To my understanding, he consults with patients' regular doctors for free so that they are up to speed in terms of what's going on. His fees are modest compared to many CFS specialists', and he takes insurance.

    He strongly urges patients to use their own doctors for lab testing, meaning that he's not making money on those tests.

    I recently took a look at the videotaped info on Dr. S's website, biotoxin.info. He states at the end of one of the videos that he has enough data available to publish five separate papers in quality journals but needs funding in order to hire professional analysts to bring the articles up to the journal standards. (He says he's treated 6500 patients for possible biotoxin illness and seems to keep scrupulous data on them.) His work is not being funded by pharmaceutical companies or any government agencies, and so the $50,000 per paper that he says he needs does not seem to me to be unreasonable. (It's a tax exempt organization.) I hope that he does indeed get his papers published, since that should go a long way toward getting the attention of the general medical community.

    I have no specific knowledge of Dr. S's personal financial situation, and so it's possible he has a Mercedes tucked away in a garage somewhere. However, compared to all the CFS-type doctors I've heard of, he seems to be the last one I'd accuse of just trying to make a buck off us.

    The biggest criticism I've heard about him is that his personality can be on the abrasive and somewhat arrogant side. Conceivably this might affect whether becoming his patient would be a good personal experience, but I don't think it should influence what we think of his work or his motives.

    Best, Lisa
  13. Slayadragon

    Slayadragon New Member

    RE the comment that "I think it's possible that more than one pathogen is making us ill."

    That's precisely the crux of Dr. Shoemaker's work.

    His belief is that for patients with certain genotypes, lyme and/or mold toxins can have a severely adverse effect on the immune system.

    (Merely killing the lyme with antibiotics does not solve this problem. The toxins remain in the body causing problems with the immune system until they are removed with cholestyramine or conceivably in other ways, he says.)

    Certainly, evidence suggests that these biotoxins have a negative effect on Natural Killer Cells.

    Some also say that (by increasing certain cytokines) it has a negative effect on Rnase-L as well.

    (Rich told me a while back that he wasn't sure that the effect on Rnase-L actually existed. I don't know if consensus on this issue has since been reached.)

    To the extent that the immune system is compromised, this sets the stage for all kinds of pathogens to invade.

    Some of these are relatively minor. Others (I'm thinking of things like babesia and toxoplasmosis) are really scary.

    Killing those bugs directly when the immune systm is broken can be quite difficult and stressful.

    Repairing the immune system first can make it much easier to get rid of those bugs. In some cases the system may be able to accomplish this on its own, though in others a bit of help may be required.

    I've been addressing my toxic mold problem through avoidance and through detoxification with cholestyramine and other substances. I had panels of NKC's and Rnase-L (along with LMW Rnase-L) done prior to discovering the mold issue. At some point soon, I will have the NKC and Rnase-L panels re-done. If these have improved significantly, I will be inclined to attribute it to addressing the mold.

    (I've gotten _much_ better subjectively, but having numbers on paper is much more convincing.)

    Hopefully others here will have this done as well.

    [This Message was Edited on 07/16/2008]