Various ME/CFS Researchers take on Lyme vs CFS

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Aug 3, 2008.

  1. xchocoholic

    xchocoholic New Member

    I was curious about what some of the long time researchers have to say about Lyme. The part where Cheney states that Lyme is indistinguishable from CFIDS is in astericks but I copied in the whole thread since there's other good info here too.

    Summary of a Lecture by Dr. Paul Cheney, MD, PhD May 7, 1998
    The National CFIDS Foundation
    103 Aletha Rd, Needham Ma 02492
    (781) 449-3535 Fax (781) 449-8606

    CFIDS is a subset of a larger group of diseases, post viral syndrome or post infectious disease. Similar disease syndromes from the past are the following:

    Great Britain in the '50s - a virus like polio which was later called ME, myalgic encephalitis. This was linked to an enterovirus, a polio-like virus. Many of the ME patients Cheney has seen in Great Britain walk with canes and have trouble with paralysis.

    United States in the '80s - something diagnosed as chronic mononucleosis or chronic EBV.

    ****** Below is his statement about Lyme *****

    Current diseases which look almost like CFIDS are Lyme Disease, Gulf War Illness, and Post Polio Syndrome. Cheney mentioned that chronic Lyme Disease is indistinguishable from CFIDS.


    Cheney's idea of the causes of CFIDS is that there is a triggering INFECTIOUS agent. Cheney does not know if the triggering infectious agent sets off an abnormal immune response which continues with a life of its own, or if the infectious agent stays and continues to do its damage indefinitely.


    Alpha interferon is released to defend against an intracellular invasion. This activates the three RNaseL pathways, 80kDa, 42kDa, and 37 kDa. These pathways "chew up" messenger RNA in order to kill intracellular pathogens.

    They are "idiot savants" in that they chew up all RNA but are more damaging to the viruses than to the human cells. No one is sure why. In CFIDS the 37 kDa is very high. Interestingly, this is not true in fibromyalgia, only in CFIDS. This may turn out to be the distinguishing marker for CFIDS.

    In the body 37kDa is a disaster. It goes wild and causes a host of symptoms. It is very distructive to all human body systems including brain, muscle, liver, and heart, among others. Indeed, every organ system is affected, giving rise to the multitude of confusing symptoms which we call CFIDS.

    The 37kDa enzyem MAY destroy the infectious agent. However in doing so may continue doing damage to the body after the infection is gone.

    Of the four systems, brain, muscle, liver, or heart, Cheney said that the damaged liver causes the most pain and fatigue. He mentioned that people with brain damage or severe heart conditions would still feel reasonably well in the framework of their disease, whereas those with liver damage would be extremely ill.

    This is because the liver detoxifies the GI tract, the most poisonous part of the body. The intestines, by design, must be permeable, and when they are not working right the toxins can get into the lymphatic system. This in turn poisons the brain. Reye's Syndrome is an example of a post-infectious disease which knocks out the liver.

    The most toxic entity in the body is candida or yeast. It is very xenobiotic. When the liver is healthy it will clear these mycotoxins through the urine. Therefore, we can test the urine for toxins to see how the liver is functioning. Research from Australia has shown a toxin called CFSUM-1 is found in the urine of CFS patients.

    Since then many other toxins have been found, and they cause PAIN. The toxins produced by candidiasis are Tartaric Acid and Arabinose. Cheney described two boys diagnoses as autistic. When their urine was tested they had high levels of Tartaric Acid and Arabinose.

    Both boys had been on repeated antibiotics for recurring ear infections and had not been autistic until recently. They were about six years old. Tartaric Acid looks like Malic Acid and poisons cells by interferring with the Krebs Cycle. Arabinose poisons the brain. When the two boys were treated with nystatin for candidiasis they both recovered and were no longer autistic.

    CFIDS resembles lupus. It elevates cytokines which, in turn, reactivate inactive infections.

    CFIDS patients test low in glutathione, a substance produced by the liver. Glutathione reduces viruses and helps to remove heavy metals from the body. With low levels of glutathione heavy metals such as mercury can enter the brain and damage the hypothalamus.

    Cheney discussed mercury fillings. He gave a very informative aside concerning research from Duke University. Dr. Roses worked on genes which protect or predispose to Alzheimers. The same genes which protect against Alzheimers enable the body to clear toxic mercury.

    Those who have this gene will never get Alzheimers and will never need to worry about being poisoned by their mercury amalgam fillings. When an audience member asked if we should have our fillings removed Cheney's advice was probably not. Those who were protected genetically didn't need it, and those who were not probably could not be helped at this point. Also, there was risk of even worse exposure by improper removal.

    Cheney commented on the dangers of root canals at length. He said that they could be a major source of unrecognized infection, poisoning the body. He said he know of cases who totally recovered when they had their root canalled teeth removed. Again someone asked if we should have our root canals removed. Cheney replied that if you had one it might be worth it. If you had several there was a great risk that the bone below the teeth would be infected, and the risk was too great.


    Level One

    Lifestyle adjustments - find your limits

    Modified elimination diet - determine foods which make you sick

    Activity limits - types of exercise

    Aerobic is BAD. It actually kills mitochondria causing permanent damage

    Anaerobic is GOOD. You can lift weights, stretch, isometrics, anything you can do in 10 sec. Aerobic muscles are used for posture. Anaerobic muscles are used to lift.

    This is why CFIDS patients can lift weights while they cannot walk around a mall and shop without getting exhausted. rebounding or bouncing is BEST - use trampoline or bouncing chair, most efficient exercise and encreases lymphatic flow, is healing to the immune system

    Beliefs and attitudes - change ones that make you sick, example, your value is not measured by your work. THE POWER OF MYTH by Campbell and WHY PEOPLE DON'T HEAL AND HOW THEY CAN by Myss

    Level Two

    Neuroprotection - The brain is injured in a monotonous way. It fires at lower threshold levels. Therefore, information density will confuse, sensitivity to light, pain intensified, cannot sleep, hearing is amplified. Drugs which treat this are magnesium, klonopin, neurontin, doxapin, nicotine, and narcotics. These need to be titrated at small optimum doses different for each patient. These drug perserve the brain from damage.

    Level Three

    Antioxident Therapy - Under heavy oxidative stress the antioxidants shovel free electrons into a bioflavinoid buffer. The problem is if we are deficient in bioflavinoids the free electrons will simply be freed again to cause more damage. We need to take bioflavinoids as well as antioxidents. Beware of iron and copper supplements. These minerals cause free radicals. One evidence of this is that the best protection against heart disease is donating blood twice a year or menstuating every month. This reduces iron levels in the blood. Selenium and zinc were minerals which Cheney recommended as functioning to reduce free radicals.

    Level Four

    B12 shots were the treatment most CFIDS patients found to be effective in relieving their symptoms. Two thirds of tested CFIDS patients had no detectable levels of B12 in their brains. B12 serves to remove toxins, especially heavy metals such as mercury, from the body.

    Cheney reported on a case of cyanide poisoning in Great Britain which was treated with massive doses of B12. The B12 bonded with the cyanide removing it from the body and those poisoned recovered. Cheney prescribes B12 shots of 10,000 mcg to be given at bedtime. This Hydroxycabalamin is bonded with water, not cyanide, as most B12 is. Cheney also mentioned B6, but warned not to take the peredoxine form, as it turns into ammonia in the body. He warned that B vitamins can feed yeast.

    Level Five

    Liver, gut - Glutatione is useful, but Cheney did not know any way to get an effective form of it at this time. He did not recommend any capsules currently for sale. He also mentioned testing for toxins, staying away from antibiotics, and treating yeast infections.

    Level Six

    Low Molecular Weight Protein - Ampligen is an experimental drug which holds promise. Kutapressin may be another form of the same drug. Cheney mentioned three difficulties with Ampligen.

    1. Treatment was only being given in 10 locations in a double blind study.

    2. Treatment was very expensive. One would have to "mortgage the farm" to afford the treatment. Once off the study the medicine would cost thousands of dollars.

    3. Hemisphrix would not quote their relapse rates, so Cheney quoted his own from his initial studies. 85% of his patients relapsed when they went off Ampligen.

    Nevertheless, he was hopeful that Ampligen might be effective when used over a long period of time and at optimum dosage.

    Trancribed by Paula Carnes

    [This Message was Edited on 08/03/2008]
    [This Message was Edited on 08/04/2008]
  2. xchocoholic

    xchocoholic New Member

    Here's another good article by a long time researcher. This time I only copied in the section on Lyme.

    Q&A with Charles W. Lapp, MD: World Authority on ME/CFS/FM Evaluation & Management

    User Rating: / 0
    Doctors - Dr. Charles Lapp
    Written by Dr. Charles Lapp
    Wednesday, 18 June 2008

    Q:What proportion of your patients do you think may have Lyme disease? Do you think it’s separate from ME/CFS, a trigger, or?

    Dr. Lapp: Only a very small number of my patients have Lyme, and we test just about everybody!

    Lyme can clearly be a trigger for ME/CFS. If untreated it can perpetuate ME/CFS and cause terrible symptoms. There is no evidence that IV or long term treatment is needed.

  3. xchocoholic

    xchocoholic New Member

    "Do viral infections trigger FMS or CFS?

    11-20% of HIV patients have FMS
    acute coxsackie virus includes chronic FMS
    acute parvovirus includes FMS 18% of 293 FMS patients describe an infectious onset (Goldenberg, 1993) which is a tiny number in comparison to CFS
    B. burgdorferi is known as a triggering agent (77 to 800 "chronic Lyme patients actually had FMS" (Hsu, et al) while 43 of 77 prior Lyme documented patients had CFS.

    Under the current definition of CFS, Lyme was the trigger and chronic Lyme is considered CFS. Thus, Lyme is another overlapping illness. "

  4. xchocoholic

    xchocoholic New Member

    This one actually makes the most sense to me. I believe that our immune systems don't fight off viruses like Lyme, EBV, etc. And that treating the viruses isn't going to help long term if we don't improve our immune systems.

    The Lyndonville Journal:

    The Onset Patterns of CFS

    David S. Bell, MD, FAAP

    Published in Lyndonville News, July 2001

    "It is possible that prolonged fatigue and neurologic symptoms following Lyme disease is not due to persistence of the Lyme organism, but is the CFS reaction after an initiating infection."
  5. Rafiki

    Rafiki New Member


  6. mezombie

    mezombie Member

    I agree, Xchocoholic, that it's the immune dsyfunction that follows an infectious trigger that appears to be the most problematic.

    I find this interesting, yet also discouraging as I've tried just about every method of tackling the immune dysfunction with the exception of Ampligen.

    Back to the drawing board for me.

  7. xchocoholic

    xchocoholic New Member

    This is just the first 1/2 of this article since he gets into treatments after that. This one's interesting ... He says that we have faulty immune systems and don't have to treat Lyme, etc, unless we meet certain criteria which he details in this article.

    Monday, June 30th, 2008:

    Treating Hidden Antibiotic Sensitive Infections in CFS/FMS

    by Jacob Teitelbaum MD

    Used with permission "From Fatigued to Fantastic" (Penguin/Avery Oct 2007).

    Dear Readers,

    Because of the immune dysfunction present in CFS and Fibromyalgia, most of us have had not one, but many different infections associated with our illness. These include Yeast/Candida, Viral infections, Parasites, and Antibiotic Sensitive Infections (including Lyme and many others).

    Unfortunately, the tests we have available are largely geared toward picking up early infections, and miss most chronic infections.

    We have discussed viral infections and the problems with lab testing elsewhere. In addition, Professor Montoya will be presenting his placebo controlled research results later this month on using Valcyte to treat CFS at the Baltimore HHV-6 conference. I suspect the results are positive as the drug company offered me $1,500 to come to a meeting discussing the results (I declined), but I look forward to seeing the results as we have found Valcyte to be very helpful in those with HHV 6 IgG blood tests of 1:320 or higher.

    The good news is that you do NOT need to treat most of the infections seen in CFS/FMS. Most of these infections are called "opportunistic", which means they get quickly eliminated when your immune system gets healthy. Because of this, treating with the SHINE Protocol will result in 91% of you getting better without antibiotics (see our research study). In addition, natural treatments to boost immune function can be very helpful. As your immune system recovers, your body will eliminate most infections on its own.

    Some infections (especially yeast/Candida), however, need to be treated for you to recover. Some have chronic Lyme, though testing for this is very unreliable (see Lyme testing). In addition to treating for Candida, Lyme, and occasionally viruses and parasites, a subset of people with CFS/FMS need long term antibiotic therapy. I find this is the case if any of the following are present:

    1. A fever over 98.6°F—even 99°F—and/or

    2. Chronic lung congestion,

    3. Recurrent scalp sores which scab,

    4. A history of bad reactions to several different antibiotics (people misinterpret the die-off reaction as being an allergic reaction),

    5. A history of your CFS/FMS transiently improving in the past when given an antibiotic,

    6. Severe vertigo—this is when you feel like you or the room is spinning in a circle and is not to be confused with the disequilibrium experienced by most of us with CFS,

    7. Severe night sweats which persist after treating the Candida and hormonal deficiencies.
    If you have any of these, you may benefit from a trial of antibiotics. Let's look at this further.
    [This Message was Edited on 08/03/2008]
  8. xchocoholic

    xchocoholic New Member

    Thanks Rifiki,

    I was getting confused by all the Lyme talk and thought the researchers must've looked at this by now. Since they have our best interests at heart, they seem like a good group to trust.


    That's what I'm thinking too. It just makes the most sense to me.

    I tested positive for elevated viral titers that I didn't treat specifically with antivirals and most of my symptoms are gone. So obviously, those viruses weren't causing my symptoms.

    It was my immune system / digestive tract causing most of my ME/CFS symptoms. Which makes sense since the immune system is responsible for creating symptoms.

    I'm working on healing my gut from dysbiosis and leaky gut, like Karen (barrowinnovations). Only without the advantage of labs and a good doctor to help.

    It's just taking FOREVER !!!

    Have either of you tried enzymes ? I think,but can't be sure yet, that the candidase and digestive enzymes are helping me heal too ...

    Ooops, I had to come back and edit this because I always forget that I've been drinking herbal teas (olive tree leaf, pau d'arco, clove and elderberry) and eating raw garlic and herbs since 2005 which may be helping with the viruses too ...

    Now to go lay out in the sun ...

    [This Message was Edited on 08/03/2008]
  9. mezombie

    mezombie Member

    It's really a question of which came first, the chicken or the egg, isn't it?

    I suspect our immune systems were wrecked by a "hit and run" virus, that is, a virus that is no longer detectable in our systems. Our resulting dysfunctional immune systems then are more prone to new or reactivated infections.

    I do take digestive enzymes, specifically Similase. I was a patient of a very progressive doctor starting in 1991, and then saw Dr. Cheney for several years. So yes, I've had the stool tests, organic acid tests, and have tried the "natural" treatments that have worked for so well for Barrowinnovations and others on this board.

    Many people assume those of us who have been sick a long time simply haven't tried what they have, have done it wrong, don't want to get well, etc. That is simply adding insult to injury! I'm not saying you are doing that, Xchocoholic, I'm just frustrated and venting a bit.

    [This Message was Edited on 08/04/2008]
  10. Lichu3

    Lichu3 New Member

    about Lyme and CFS but would caution people to heed the dates of when things were written. For example, the Cheney stuff is from a decade ago and as others have written, his views have changed and evolved.

    I don't follow Cheney but know others do on this website. Newbies might find the main title of the post confusing in regards to Cheney -- unless someone else can confirm his current views on Lyme.

    Also, in Osler's Web, the book, there is a section about Lyme and CFS as it was investigated in the past. But many of the top researchers did not think it was related to CFS.

    I also agree with Mezombie's comments about hurtful assumptions - not on this particular thread, but many, many others.

    [This Message was Edited on 08/04/2008]
  11. xchocoholic

    xchocoholic New Member

    Hi there,

    Please don't take this thread the wrong way. I just found all the Lyme info too confusing, needed to research it and posted what I found.

    FWIW, I'd never criticize others for not trying what I'm trying. I'm here to learn from others and demonstrate what I've learned whether it's good or bad. That's why I have such a long profile.

    Actually, I'm still open to anything that might work ... Even antibiotics for Lyme if I test positive and all else fails. I'm just not one to take meds without looking at other alternatives first.

    I'm still trying to get a handle on this, but from what I understand, the viral titers we have only mean that our bodies ability to report viral titers is off. Did that make sense ?

    I can't find this article again, but I understand that viral titers are established in our digestive tracts as part of our immune system. They are created in the section at the base of the intestinal villi (these villi are like long fingers with each part having a specific purpose) and are part of the TH1 and TH2 system. So it's not the viruses we need to treat, it's the digestive tract / immune system.

    BTW, if you're a celiac, your villi are gone in the celiac section of your intestine. But some researchers are now saying they belive that other villi along the digestive tract are damaged long before this section is completely destroyed.

    Also, I became a cynic in 2005 when I learned how food was affecting my health all of these years. Because of all the LYME hype on the web, it seems like a good way to scam people out of their money. Hype gets on the way of critical thinking sometimes. Just look at how many people threw out their tomatoes a couple of weeks ago because of that salmonella hype. And it turned out to be jalepenos. DUH !!

    I'm not saying this Lyme is ALL hype. I'm not privey to that type of info. The number of posts on the web isn't really a good way to judge how prevalent Lyme is. I unintentionally helped the number of gluten related posts on the WWW quite a bit myself. LOL

    I posted this because I was confused about Lyme vs CFS. I figured since Lyme and CFIDS have been around for a long time then the researchers must have looked at this. With all their years of experience, they seem like the best source for ME/CFS/FM info.

    I had noticed that the info from Cheney was from 1998, but since he's been looking at this since 198?, I figured it was probably still accurate. All of the more current research I've seen from Dr. Cheney has been heart related. The criteria for diagnosing CFS is the same as it was back then.

    The others appeared much more current ...

    Hope this clears this up ... I was hoping someone might have other info from some of the other well known researchers. I was looking for Rich's thread on this, but haven't found it yet ...

    sincerely ... Marcia

  12. xchocoholic

    xchocoholic New Member

    This article states that polio damages the brain stem causing NMH. It also says that other viruses damage the brain stem and could account for NMH in CFIDS patients. Interesting ...

    It's long so I copied in the first paragraph ...

    FROM The Post-Polio Institute
    The International Centre for Post-Polio Education and Research
    Englewood Hospital and Medical Center
    Englewood, New Jersey U.S.A. 07631
    Phone: (201) 894-3724 Toll Free: 1-877-POST-POLIO
    Fax: (201) 542-6491
    for the PPS Library and all of our papers describing our research and treatment of PPS...

    Bruno RL. Fainting and Fatigue: Causation or Coincidence? CFIDS Chronicle, 1996; 9(2): 37-39.

    FAINTING AND FATIGUE: Causation or Coincidence.

    Dr. Richard L. Bruno

    As the former autonomic nervous system fellow at New York's Columbia-Presbyterian Medical Center, and in my current incarnation studying chronic fatigue in polio survivors, I have read with special interest the reports from Johns Hopkins University describing neurally mediated hypotension (NMH) in adults and adolescents with CFIDS.1

    In June 1995, we presented a paper to the American Congress of Rehabilitation Medicine describing several of our post-polio patients who have had episodes of vasovagal syncope.2

    One patient with a 10-year history of severe, chronic and disabling post-polio fatigue had a history of frequent fainting 35 years before she ever experienced fatigue.
  13. Slayadragon

    Slayadragon New Member

    A very simple answer to all of this is that there possibly could be a triggering TOXIC agent rather than a triggering infectious agent.

    A toxic agent certainly can set off an abnormal immune response which continues with a life of its own. Also, unless the toxic agent is eliminated from the body in some way, it sticks around and continues to do harm.

    Mycotoxins (mold poison) have been shown to do just this: they set off an abnormal immune response plus does direct damage over time.

    If we consider the amount of toxins in the world now vs. in he past, it seems to me likely that an increasing number of illnesses will have underlying causes of toxins rather than pathogens.

    Modern building design has made mold toxins exceedingly more potent and prevalent than they were even 50 years ago, for instance.


    Cheney's idea of the causes of CFIDS is that there is a triggering INFECTIOUS agent. Cheney does not know if the triggering infectious agent sets off an abnormal immune response which continues with a life of its own, or if the infectious agent stays and continues to do its damage indefinitely.


    Alpha interferon is released to defend against an intracellular invasion. This activates the three RNaseL pathways, 80kDa, 42kDa, and 37 kDa. These pathways "chew up" messenger RNA in order to kill intracellular pathogens.

    They are "idiot savants" in that they chew up all RNA but are more damaging to the viruses than to the human cells. No one is sure why. In CFIDS the 37 kDa is very high. Interestingly, this is not true in fibromyalgia, only in CFIDS. This may turn out to be the distinguishing marker for CFIDS.

    In the body 37kDa is a disaster. It goes wild and causes a host of symptoms. It is very distructive to all human body systems including brain, muscle, liver, and heart, among others. Indeed, every organ system is affected, giving rise to the multitude of confusing symptoms which we call CFIDS.

    The 37kDa enzyme MAY destroy the infectious agent. However in doing so may continue doing damage to the body after the infection is gone.
  14. xchocoholic

    xchocoholic New Member


    Thanks for the immune system explanation. I'm a ways off from understanding all of it just yet... ; ) Honestly, I'm convinced by the time I understand that, they'll come up with something new .. sigh ...

    JMHO - I think those of us with ME/CFS are just one trigger away from ME/CFS (or CFIDS - Chronic Fatigue Immune Dysfunction Syndrome) and it doesn't matter what it is ... stress, viral, toxin ...

    But if you heal completely by eliminating a trigger then your ME/CFS symtpoms were actually from that trigger and not really what the researchers used to call CFIDS. IMHO, the lucky ones are the ones who heal when they eliminate a trigger.

    I'm glad to hear that you're feeling so much better after eliminating the mold but I'm curious as to how long it will last. And if you have elevated viral titers or are positive for Lyme ...

    If you have a damaged immune system, then I would expect it to only last a few months. By then your immune system will sink back into over producing cytokines or whatever it's doing that keeps us sick (broken detox system / GD-MCB ???).

    I experienced this after I eliminated gluten, etc. I felt better right away and even felt like a teenager for month or so after a year, but then I went back to feeling tired all the time again. I can still walk normally, etc so it helped tremendously, but not enough to rid me of ME/CFS/FM.

    Then, I also saw a huge improvement when I first eliminated grains. Then again when I added salt to my diet and once more when I started taking the Candidase.

    I was wondering if others have run into this too ...

    PS. Just wanted to add that when I think of the underlying cause of ME/CFS, I relate it to what Rich says about us having a broken detox system. I don't understand all of this well enough to know if Rich is correct, but his logic appears solid. From what I understand he's using the same/ similar protocal as DAN doctors use for autism.

    It's the same idea as what's behind autism vs a simple intolerance to gluten or dairy ... which is why this DD is so confusing and why some of us diagnosed with this DD heal when we eliminate a, b or c.

    Did that make sense ???

    Marcia[This Message was Edited on 08/04/2008]
  15. richvank

    richvank New Member

    Hi, all.

    Here's a discussion of my current hypothesis for a link between Lyme disease and CFS. I will first review the GD-MCB hypothesis for CFS, then discuss the evidence for glutathione depletion by Borrelia burgdorferi, the bacteria that causes Lyme disease, and then I will put these together in a hypothesis linking Lyme disease to CFS:

    I. Review of the Glutathione Depletion—Methylation Cycle Block (GD-MCB) Hypothesis for CFS [1]

    The person inherits a genetic predisposition (polymorphisms in several of certain genes) toward developing CFS. (This genetic factor is more important for the sporadic cases than for the cluster cases of CFS.)

    The person then experiences some combination of a variety of possible stressors (physical, chemical, biological, psychological/emotional) that place demands on glutathione.

    Glutathione levels drop, producing oxidative stress, removing protection from B12, allowing toxins to accumulate, and shifting the immune response to Th2.

    Toxins react with B12, lowering the rate of formation of methylcobalamin.

    Lack of sufficient methylcobalamin inhibits methionine synthase, placing a partial block in the methylation cycle.

    Sulfur metabolites drain through the transsulfuration pathway excessively, pass through sulfoxidation, and are excreted.

    A vicious circle is established between the methylation cycle block and glutathione depletion, and the disorder becomes chronic.

    II. Depletion of glutathione by Borrelia burgdorferi

    Bb requires cysteine for its metabolism [2].

    Cysteine diffuses passively into Bb from its host, i.e. there is no active transporter protein [2].

    Bb uses cysteine in the synthesis of several of its essential enzymes: Osp A, Osp B, CoASH, a hemolysin, and others [2,3].

    Bb does not use glutathione for its redox control. Instead, it uses reduced Coenzyme A (CoASH) [4].

    Cysteine is the rate-limiting amino acid for the synthesis of glutathione in humans, so that depletion of cysteine will produce depletion of glutathione [5].

    Bb lowers the cysteine and glutathione levels in its human host, and inhibits the activity of glutathione peroxidase [6].

    Low glutathione and low activity of glutathione peroxidase allow a rise in hydrogen peroxide concentration and oxidative stress [7].

    Elevation of hydrogen peroxide causes Bb to assume its cyst form [8], in which it is less vulnerable to antibiotics [9].

    III. New hypothesis for a link between Lyme disease and chronic fatigue syndrome

    Borrelia burgdorferi (Bb) deplete glutathione in the host.

    For a person who is genetically susceptible to developing CFS, this provides a link to the GD-MCB hypothesis for CFS and is one of the possible routes into this disorder.

    If Bb and its biotoxin were not eliminated, Lyme disease and CFS would coexist in the host, and this would constitute “chronic Lyme disease.”

    If Bb and its biotoxin [10] were eliminated, but the methylation cycle block continued, the person would continue to be ill with CFS. This would constitute “post-Lyme disease syndrome,” which would be analogous to the other post-infective fatigue syndromes [11].

    If Bb and its biotoxin were eliminated, and the methylation cycle block was lifted, I believe it is likely that the person would become well.

    In addition,

    Perhaps the Borrelia burgdorferi toxin is one of the toxins that will react with vitamin B12. Mold toxins have been implicated in such reactions, but no data were cited [12,13].


    1. Van Konynenburg, R.A., “Glutathione Depletion—Methylation Cycle Block, A Hypothesis for the Pathogenesis of Chronic Fatigue Syndrome,” poster paper, 8th Intl. IACFS Conf. on CFS, Fibromyalgia, and Other Related Illnesses, Fort Lauderdale, FL, January 10-14, 2007

    2. Sambri, V., and Cevenini, R., Incorporation of cysteine by Borrelia burgdorferi and Borrelia hersii, Can. J. Microbiol. 38: 1016-1021 (1992).

    3. Williams, L.R., and Austin, F.E., Hemolytic activity of Borrelia burgdorferi, Infection and Immunity 60(8): 3224-3230 (1992).

    4. Boylan, J.A., Hummel, C.S., Benoit, S., Garcia-Lara, J., Treglown-Downey, J., Crane, E.J., III, and Gherardini, F.C., Borrelia burgdorferia bb0728 encodes a coenzyme A disulphide reductase whose function suggests a role in intracellular redox and the oxidative stress response, Molecular Microbiol. 59(2), 475-486 (2006).

    5. Griffith, O.W., Biologic and pharmacologic regulation of mammalian glutathione synthesis, Free Radic Biol Med. 1999 Nov;27(9-10):922-35.

    6. Pancewicz, S.A., Skrzydleweska, E., Hermanowska-Szpakowicz, T., Zajkowska, J., and Kondrusik, M., Role of reactive oxygen species (ROS) in patients with erythema migrans, an early manifestation of Lyme borreliosis, Med. Sci. Monit. 7(6), 1230-1235 (2001).

    7. Levine, S.A., and Kidd, P.M., Antioxidant Adaptation, Its Role in Free Radical Pathology, Allergy Research Group, San Leandro, CA (1985).

    8. Murgia, R., and Cinco, M., Induction of cystic forms by different stress conditions in Borrelia burgdorferi, APMIS 112, 57-62 (2004).

    9. Kersten, A., Poitschek, C., Rauch, S., and Aberer, E., Effects of penicillin, ceftriaxone and doxycycline on morphology of Borrelia burgdorferi, Antimicrob. Agents Chemother. 39(5), 1127-1133 (1995).

    10. Shoemaker, R., Schaller, J., and Schmidt, P., Mold Warriors, Gateway Press, Baltimore (2005).

    11. Hickie, I. Davenport, T., Wakefield, D, Vollmer-Conna, U., Cameron, B., Vernon, S.D., Reeves, W.C., Lloyd, A., Dubbo Infection Outcomes Study Group, Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study, BMJ. 2006 Sep 16;333(7568):575. Epub 2006 Sep 1.

    12. Anyanwu, E.C., Morad, M., and Campbell, A.W., Metabolism of mycotoxins, intracellular functions of vitamin B12, and neurological manifestations in patients with chronic toxigenic mold exposures. A review, ScientificWorldJournal 4, 736-745 (2004).

    13. Anyanwu, E.C., and Kanu, I., Biochemical impedance on intracellular functions of vitamin B12 in chronic toxigenic mold exposures, ScientificWorldJournal 7:1649-57 (2007).


    [This Message was Edited on 10/06/2008]
  16. victoria

    victoria New Member

    Paula Carnes who transcribed has actually found she had/has lyme...

    she has posted on this board occasionally btw under user name gowest (I'm giving any secrets away as she has signed her name usually).

    [This Message was Edited on 10/07/2008]
  17. Catseye

    Catseye Member

    Hi xchocoholic,

    great thread!

    I was helped enormously by Cheney's articles. I think he has too much "medical doctor" in him to be perfectly helpful, but I got tons of tips from his findings. One thing I was particularly interested in was RNase L. He said that happened because of the immune system's shift from th1 to th2, and we had to shift it back again. I read about how ampligen may be able to combat RNase L. I also figured I had high levels of RNase L because of my symptoms and because Cheney found it in many of his worse off patients.

    So I started searching for other alternative than ampligen, because it was insanely expensive and it was a drug and therefore would probably cause more problems. So after extensive searching, I put together a list of substances that could help shift the immune system from th2 back to th1. Here's my list from a post I did a few months ago:
    I said "I'm using" after some things, that's what I was using in April. I tried everything except neem at some point, but now I just use NAC for glutathione. I have no real way of knowing if taking these did what they were supposed to, but since my symptoms improved from the bad dying feeling, I'm assuming they did and that they helped solve the RNase L problem. Most of these things are good for more than just RNase L. This is my April '08 post:

    For modulating the immune system, I searched and came up with several supplements that are supposed to shift the th2 overactive part of the immune system to th1. The th2 overactive means the RNase-L is running around eating messenger RNA of viruses AND our own messenger RNA, thereby disrupting protein synthesis. And considering the liver is home to most of the protein synthesis in our bodies, it's functions are inhibited causing all kinds of problems.

    So these are the things I've found that shift th2 to th1, which is what we want:

    transfer factor
    deer antler velvet - I'm using
    IP6 - I'm using
    colostrum - used, but sneezed from diary allergy
    beta glucan
    probiotics - I'm using
    chlorella (also for heavy metals, esp mercury) - I'm using
    dhea - I'm using
    pine bark extract is also pycnogenol (same chemicals) - I'm using, you could also use grapeseed extract, much cheaper
    glutathione - I'm using NAC to help my body make this

    Another thing that bothers the CNS in cfs patients is elevated homocysteine levels. TMG (trimethylglycine) is from plant and animal sources and is used in the conversion of homocysteine to methionine. It lowers homocysteine levels, helps protect the liver and raises SAMe levels. And make sure you are getting B vitamins. I take about 1000 mg of TMG everyday.

    After I read Cheney's explanation of RNase-L and the importance of shifting the immune system from th2 to th1, I searched for a long time to find supplements that would supposedly shift it. These were all the ones I found. The ones I said "I'm using" meant I used them for a few weeks or more. The transfer factor, beta glucan and noni I just tried briefly.

    Well, obviously the colostrum making me sneeze was the reason for quitting that one and the noni juice smelled and tasted like feet with foot fungus so that was the end of that. There are noni trees on the beach and I tried it directly from the fruit, not one of those nice tasting noni drinks they make. That was a long time ago. And I used probiotics for over a year and the IP6 and deer antler velvet for a very long time. The dhea I also used to help the adrenals, I just quit it last month.

    I'm assuming they did what I wanted them to do. But I have no way of knowing for sure because I never had RNase-L levels tested.

    Mikie, the colostrum made me sneeze because I was extremely sensitive to dairy back then. But now that my gut is in much better shape from the new treatment I'm doing, I don't seem to have a problem with whey, at least, and I did before. I think these dairy allergies are just an indication of a bad gut ecology and not real allergies.


    [This Message was Edited on 10/07/2008]
  18. munch1958

    munch1958 Member

    While a patient at the Detroit FFC, I started on nebulized glutathione. It has done wonders for my MCS. I've nebulized glutathione 2X per week for 15 months then went up to 3X per week for the past 9 months.

    After 2 years, I'm not ready to douse myself if perfume or go back to smoking. I am able to tolerate being in a crowd now. I can go to the movies without tasting someone else after shave. Life is so much easier now.

    For years, I would do cycles of hydrocortisone. Prop up my tired old adrenals until I felt good again. Stop the meds. Then repeat the next time the fatigue took over.

    I tried SAM-e briefly. It helped with emotions but once I got on HGH I dropped it as it wasn't helping anymore.

    I've been on HGH for just over a year. I flunked the stim test for HGH release given by an endocrinologist at a major Chicago teaching hospital. My insurance is covering the cost my dose of 0.06 mg per day.

    My entire HPA axis is no longer functioning. It's very expensive to replace every hormone that is not being produced. I think this is a result of long term chronic infection with multiple pathogens.

    I'm also on two types of compounded thyroid meds.

    I had low levels of Vitamin B12 and all sorts of neuro issues. Two years ago, I was supplementing with oral B12 but it didn't really clear up all the symptoms.

    I began taking Folapro and Intrinsi about 15 months ago then switched over to Methyl-B12 shots last Dec. The bowel must have loads of B12 receptors because my long standing constipation issues have finally resolved.

    With the help of Methyl-B12 shots my long standing fatigue
    has also cleared up. I do need to do a shot of B12 once a day in order to have any sort of energy. My high homocysteine levels have dropped as have my high Cardio-CRP levels.

    As someone who got a Lyme diagnosis after 26 years of thinking it was CFS, it's interesting to see that many of the top LLMDs really do have the same protocol as some of the top CFIDS docs. So many of the treatments are the same.

    In the next few years, I hope to see a branch of medicine devoted to all of the fatigue based illnesses. Grouping them all together and looking for the similarities to me is much more helpful than fighting over names. Finding the common links to all the alphabet soup diseases would benefit us all.

    The bug that causes Lyme is called Borrelia burgdorferi or Bb for short. There are also many different strains of Borrelia. It can cause a Lupus-like illness. An MS-like illness. An ALS-like illness.

    Other than a response to Abx, it's all but impossible to spot the differences between the real disease and the Bb induced fake one. That's why it's so important to do a trial of Abx to see if your brand of illness is caused by your brand of infectious soup.

    While focusing on bacteria is key, it's also important to treat yeast and viral causes too. Also, hormonal and vitamin deficiencies need to be addressed too.

    Lyme appears to be a root cause for many with fatigue based illnesses. I'm digging around for info about the blunting of the immune system due to OspA and Pam3Cys having the same linear chemistry structure.[All+Fields

    The LYMErix vaccine failed because it caused all of the immune suppresion outcomes of Lyme without the spirochetes.
  19. richvank

    richvank New Member

    Hi, munch1958.

    It's really wonderful to hear about your progress!

    In view of the benefit you have experienced from nebulized glutathione with respect to multiple chemical sensitivity, you might be interested in my hypothesis for MCS:

    The olfactory epithelium in the “ceiling” of the nasal cavities is a small patch of tissue that is made up of two major types of cells, the olfactory neurons and the supporting or sustentacular cells, which are interspersed with the neurons. The olfactory neurons have axons that are connected into the olfactory nerve, which is the shortest pathway to the brain from the outside.

    The olfactory neurons have cilia on their surfaces facing the nasal cavities, and these incorporate receptors that are specific for the various substances that can be smelled.

    In addition to the olfactory neurons and the supporting cells, the olfactory epithelium also contains cells that secrete mucus, which covers the cilia.

    The supporting cells contain cytochrome P450 enzymes at concentrations higher than are found in the liver. It seems clear that their role is to break down (perform Phase I detoxication on) substances that are inhaled.

    In normal operation, inhaled substances are dissolved in the mucus, and those for which there are sensitive neurons elicit nerve impulses that travel to the brain and give the sensation of particular smells. The supporting cells apparently then break down and dispose of these substances, maintaining the sensitivity of the olfactory neurons to substances that are newly arrived, and protecting them from the entry of toxic substances.

    It is known that glutathione plays a major role in detoxication. Not only does it conjugate certain toxic substances in one of the major Phase II pathways, but it also serves to quench hydrogen peroxide that results from the action of superoxide dismutase on the superoxide free radicals that are generated by the action of the cytochrome P450 enzymes in Phase I detoxication.

    If the supporting cells are deficient in the reduced form of glutathione, I suggest that two adverse effects would occur. First, a state of oxidative stress would arise, because of the buildup of reactive oxygen species. These species would be likely to damage the membranes of both the supporting cells and the olfactory neurons. Second, toxic substances would not be broken down, but instead, in the presence of the damaged cell membranes, would likely enter the neurons, and from there would have a short path to travel into the brain, thus producing neurological symptoms.

    It would seem that this model for multiple chemical sensitivity would explain several of the observed features of this disorder. One is that people with MCS are sensitive to a range of volatile substances. Another is that symptoms appear very rapidly upon exposure to inhalation of these substances. Another is that temporary relief can often be obtained by using a glutathione nasal spray.

    If this model is correct, then it would seem that a cure for MCS might be brought about by restoring the levels of reduced glutathione in the sustentacular cells on a longer term basis. In autism and in chronic fatigue syndrome, it appears that glutathione levels are held down by a vicious circle mechanism that involves a partial block in the methylation cycle, at methionine synthase. Since MCS often occurs together with chronic fatigue syndrome, perhaps this same biochemical mechanism is responsible for MCS. If this is true, the same treatments that are being found helpful in autism and CFS may be helpful for MCS.

    (munch1958: I note that your experience seems to confirm this, as you reported benefit from methylcobalamin and bioactive forms of folate, which are the nutrients needed by methionine synthase.)

    Best regards,

  20. richvank

    richvank New Member

    Hi, jam338.

    I would say that so far my hypothesis about the link between Lyme disease and CFS remains viable, but that it is not yet sufficiently tested. I've had a chance to present it to some of the researchers and clinicians who specialize in Lyme disease. They asked some good questions, and I tried to give some decent answers.

    I've also had a chance to present my basic glutathione depletion-methylation cycle block hypothesis for CFS to some of the researchers and clinicians who specialize in CFS. I think it is gaining ground among them in view of recent results from Dr. Nathan's ongoing study. Efforts are now being made to try to link it to the various other hypotheses that have been proposed, i.e. to assemble the whole elephant that was under study by the "six men of Industan, to learning much inclined," "though all of them were blind." I wish I could give you more details, but right now I am still not at liberty to do so.

    There is also currently an effort underway to try to figure out the connections between CFS, Lyme disease (and its coinfections) and autism, involving specialists in each, and I am thankful to be part of that effort as well. I would say that the communication between several of the leading specialists (both researchers and clinicians) in these disorders is better than it has been in the past few years, and I see this as a very hopeful situation.

    I don't have an estimate of whether more of the principal CFS clinicians are screening for Lyme disease than were in the past, but I would say that quite a few are listening to each other more now.

    Best regards,