Originator of H2S Theory Speaks

June 22, 2009

Posted by Cort Johnson

Dr. DeMeirleir made a big splash when he announced at a press conference that he had uncovered a new and important factor in chronic fatigue syndrome (ME/CFS) called hydrogen sulfide. What was lost in the flurry that followed was the fact that if it was not for an inquisitive mother of a daughter with chronic fatigue syndrome that press conference very well might never have happened.

Years before hydrogen sulfide had become even the smallest blip on the ME/CFS research community’s radar screen a rather remarkable woman named Marian Dix Lemle was developing a theory suggesting that it could lie at the heart of this disease.

I first met Marian Lemle two years ago at the IACFS/ME conference in 2007. She had written a paper proposing that the excessive production of hydrogen sulfide gas had put ME/CFS patients into a kind of hibernation like state. I was a little taken aback by it – I had never even heard of hydrogen sulfide before and certainly not the connection with chronic fatigue syndrome. I bumped into her several more times over the next couple of years and each time her interest in the subject remained undimmed.

She got a short paper published, a remarkable accomplishment, I thought, for someone without a medical background. Then the news flashed across the Internet - big breakthrough in ME/CFS! I eagerly scrolled through the news – it was hydrogen sulfide! You could’ve knocked me to the floor with a straw. But where was Marian? I saw no mention of Marian. (Marian was cited on the last slide of Dr. DeMeirleir’s presentation)

Marian Lemle had been in London. When she got back to the states I got a chance to talk with her. She just accomplished an amazing feat; opening a new field of inquiry in a disease doesn’t, after all, happen every day – especially if you’re a lay person . In truth if anyone was going to do something like this it was probably going to be someone like Marian Lemle. Previously a professional in the telecommunications field and a exhibited sculptor and painter, she is used to traversing and excelling in different fields. I asked her how this all came about.

“In Nov 2006 I attended a meeting in Washington where a prominent molecular biologist discussed an experiment where he gave H2S gas to mice and watched their metabolic and heart rates plummet as they entered a apneic-like low-level sleep state in which one part of their brain was always monitoring the environment. When he pumped oxygen back into the chamber the mice completely recovered. I started thinking about the kind of enervated torpor-like state that CFS patients experience and I asked him if this could be related to CFS. He thought it seemed possible.”

“From there I started turning over every clue I could. I prepared a short synopsis of my findings and asked the panel on ‘The Brain in Chronic Fatigue Syndrome” at the IACFS/ME Conference in Miami in 2007 what they thought of my idea. One of the Japanese researchers (Dr. Watanabe or Dr. Kuratsune) thought it was an interesting question. The rest of them (including Dr. De Meirleir) showed little interest.”

“A couple of months later Dr. Carl Peck, former Assistant Surgeon General and a friend of the family, approached me and asked to take a look at the paper. He aid it was groundbreaking and helped me formulate the hypothesis. We periodically met over the phone to discuss drafts of the paper.”

“I sent the paper to and talked to researchers at Johns Hopkins, the NIH and elsewhere. Eventually I talked to Dr. Suzanne Vernon, the Research Director at the CFID’s Association of America (CAA) and Kim McCleary, the President of the CAA. Dr. Vernon thought the theory “made biological sense” and directed me to Dr. Richard Deth, a prominent researcher working on mercury in autism. She ncouraged me to publish the paper. All three were very supportive.”

“Dr. Deth told me that his work on thimerosal had lead him to think about sulfur metabolism in autism, but he’d missed a possible link with regard to H2S. He asked me for permission to share my ideas with his students and colleagues and I agreed. “

“I submitted the paper to the Journal of Medical Hypotheses early in 2008. The editor wrote back immediately and offered his help in getting a much shorter paper ready for publication. The abbreviated version of the original paper was e-published in September of 2008.”

For a copy of the original (complete)  paper click here

In retrospect the doors opened for Marian Lemle quite quickly; Dr. Peck, Dr. Vernon and Dr. Deth all quickly realized that Marian was ontosomething and were happy to assist her. I noted, though, how difficult it can be for a lay person to get the research community’s attention.

While noting that that’s often true, Marian observed that “In scientific discovery, many new ideas come from people on the outside who haven’t been constrained by the thinking patterns that permeate the field.” In fact we don’t have to look far to find evidence of that in ME/CFS. Rich Van Konynenburg Ph.D. is in physics yet his ideas regarding glutathione and now methylation have sparked much interest in the field.

I mentioned Rich and Marian was quite emphatic that she felt that his work deserved more attention. She talked to Rich at the IACFS/ME conference and told me that he said “You’re right!” It turns out that the H2S theory fits in quite well with Rich’s methylation theory.

The Gut Connection - Dr. De Meirler and Dr. Chia have been focusing on the gut for several years now. Marian, however, does not have a singular focus on the gut, although she thinks the story could “begin there, within the context of our genetic boxes”. She notes the prevalence of gut dysbiosis (imbalance of intestinal flora) in CFS and is inclined to think of Lyme, salmonella and many other H2S-positive infections as a manifestation of this underlying dysbiosis. She takes it even further, saying that certain people may be particularly susceptible to the effects of H2S, having, “what, years ago was called “hyper-susceptibility” to Hydrogen sulfides”.

I noted that the gut is ‘consuming’ more interest all the time but it turns out that it’s only one organ of interest with regard to H2S. Marian noted that “if the gut connection doesn’t produce reliable results it may reduce interest in other areas…The story of H2S goes far beyond what happens in the gut. H2S is fundamental to life. Imagine, there is a parallel universe in the deep sea that relies on H2S to sustain some extraordinary life forms. H2S is to the deep sea world what oxygen and light are to life on earth. Who could have imagined this?”

“We may be fueled by oxygen and light, but it turns out that H2S is essential to our bodies as well. Hydrogen sulfide and oxygen may well turn out to be the yin and yang of homeostasis in our bodies”.

Marian noted that “our mitochondria are descended from ancient eukaryotic cells, which appear to have retained that deep sea capability to use H2S as an energy substrate.”

This is the third prong of her theory. She stated that “Drs. Myhill and Moore appear to have confirmed the first part of my hypothesis– that CFS is a mitochondrial disease. Dr. De Meirleir may prove the second; i.e., that H2S dsyregulation plays a key role. Now we must examine the role of H2S in the mitochondria.”

A Nitric oxide/mitochondrial connection? H2S’s ability to interfere with mitochondrial production has again brought the question of metabolic abnormalities to the fore in ME/CFS. The Pacific Fatigue Lab has documented that some chronic fatigue syndrome (ME/CFS) suffer a kind of metabolic implosion after exercise. At the last IACFS/ME conference a Spanish researcher presented preliminary findings of greatly increased levels of nitrates in ME/CFS patient’s blood following exercise. Nitrates are derived from nitric oxide. Could H2S dysfunction be the tie that binds with regard to nitric oxide and exercise metabolism?

Martin Pall believes nitric oxide plays a key role in a broad arena of disease (ME/CFS, FM, IBS, MCS). Italo Biaggoni is currently examining whether NO is causing the blood vessels to over dilate in ME/CFS patients. Some evidence suggests, however, that H2S may even be the puppet master controlling NO’s strings in our blood vessels.

H2S is produced in the brain, pancreas, liver, reproductive tissues and it affects smooth muscle functioning in our blood vessels. Dysregulated H2S production in any of them could cause dramatic effects.

The brain connection? The brain connection is particularly intriguing. ME/CFS patients often benefit from drugs (Klonopin) or practices (meditation, relaxation exercises) that slow down nervous system activity. In fact the whole class of CFS-like illnesses (Fibromyalgia, IBS, MCS, etc.) may be characterized by an over-active nervous system. Marian informed me that H2S is produced in the brain by cystathionine beta synthase and cystathionine gamma lyase and its release in the brain is triggered by neuronal excitation.

Increased levels of H2S in the brain may indicate that low blood flows in the brain have caused a free radical explosion in the blood vessels (resulting in cerebral ischemia). Interestingly, several studies have found evidence of ‘hypo-perfusion’ or low blood flows in the brains of the ME/CFS patients. Both Dr. Baraniuk’s and Dr. Shungu’s work suggests high rates of oxidative stress/mitochondrial problems occur in the brains of at least a subset of ME/CFS patients.

Marian also noted that the brain and gut share enough similarities that the gut is often referred to as the second nervous system or the ‘enteric nervous system’. Does the neuronal excitation presumably found in the central nervous systems of chronic fatigue syndrome patients extend to the gut as well? Could H2S play a role in the irritable bowel problems so often seen? She added “We already know that it has been tied to ulcerative colitis and colon cancer.”

A Protective Mechanism? H2S by itself is not ‘bad’; it’s a potent signaling molecule that triggers important reactions across the body. Interestingly in the case of cerebrial ischemia H2S is thought to have protective effects and this brings us back to the altered brain states in sleep, hibernation, torpor and all the states in between

Could H2S outside of the gut be protecting patients from the damaging effects of ‘high’ metabolic rates. Could that torpor like state the molecular biologist described which so caught Marian Lemle’s attention in 2006 be protective? Could H2S be stepping in to induce fatigue and thus shield patients from the effects of overexertion?

The Question As with all the intriguing theories in ME/CFS, the links abound. But will they stand up to rigorous scientific inquiry? (Will they get rigorous scientific inquiry might be a more applicable question.) Dr. De Meirleir has done something that Marian Lemle could never do on her own – capture the attention of the ME/CFS community. Before going public, he wrote her in an e-mail – “Your H2S hypothesis was confirmed by us“ and is working on extending it. He’s developed a test for H2S metabolites and has asserted that H2S producing bacteria are indeed present in high levels in ME/CFS patients’ guts.

Treatment Marian Lemle is not a physician but she is a mother with an ill daughter. Has she tried to apply her theory to her daughter’s health? She said “I’m quite cautious with regard to treatments for my daughter”. She noted that the standard treatments for H2S poisoning (usually from industrial accidents) include amyl nitrate (better known in the recreational drug community as ‘poppers’) and oxygen. (Injections of the sodium nitrite (used as a preservative in foods)are also used). Only the last is tenable for ME/CFS but she has concerns about providing oxygen to ME/CFS patients.

Another tack, which appears to be used by Dr. De Meirleir, is to isolate the bacteria in the gut and attack them with antibiotics while providing nutrients to heal the gut but she has hesitancy about using long-term antibiotics. Right now she’s watching and waiting to see how all this interest that she started resolves.

The Big Breakthrough (!)(?)

17 comments

{ 17 comments… read them below or add one }

chris June 22, 2009 at 6:33 pm

Thanks for this report Cort. This is quite amazing. This gal has done what many of us would like to do: to gain an insight and connect the dots. Her thesis, at the intersection of desperation, serendipity and hard work, is certainly enviable – and I congratulate her for it.

For no particular intellectual reason, I am myself attached to the importance of dealing with issues in the gut. de Meirleir has turned many people in this direction, particularly recently – especially in situations where a number of researchers and clinicians get together and trade ideas. (Notice that Cheney and Peterson both put gut ecology first on their treatment plans. It did not used to be this way. Cheney went as far in his recent lecture as to say that nothing will work unless the gut is straightened out.) These meetings indicate a serious exchange among the best in the field. It is surprising to find out that de Meirleir is in very close contact with Cheney – and Shoemaker. The recently formed group in Europe is another positive step, directed towards education.

Somehow Lemle’s H2S thesis collided with de Meirleir’s existing thoughts – and he very quickly connected the dots. de Meirleir now believes this recent thesis of Marina Lemle is the missing link. And he is going about his business trying to prove it.

My daughter did this recent test H2S urine test and was positive; mine was negative. I don’t have CFS; she does.

Chris

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cort June 24, 2009 at 6:46 am

Yes, I remember Dr. Cheney emphasizing the gut really quite early. Dr De Meirlier of course tagged the gut as a key player several years ago; the H2S idea seems to have put the pieces together for him. My gut was the only really weak spot I had growing up that I was aware of; I often had messy bowels and gas. I got my bowels into shape a couple of years ago by focusing on eating more vegetables altho I recently had problems with irritable bowel syndrome which raw fresh vegies took care of.

I still wonder, though, why aren’t we all blowing huge amounts of gas if there’s all this H2S production going on. Some people actually burp H2S; if H2S is a big issue it must combine with other problems – which as I remember what Dr. De Meirleir suggested.

Marian’s is an amazing story that’s for sure.

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drew June 23, 2009 at 2:58 pm

This is fascinating, Cort, and I’m becoming quite excited about these developments. As I’ve said before, my ME/CFS problem are directly tied in with eating — what I eat, and when, determines how exhausted (or not) I feel.

I’m especially intrigued by the idea of an H2S protective mechanism. I’ve noticed that I generally have LESS energy if I get a good night’s sleep … maybe because my body is able to manufacture more H2S??? Very interesting ideas here. But what we need, of course, is some proof that reducing H2S improves how ME/CFS patients feel!

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Dr John L Whiting June 24, 2009 at 1:48 am

Cort, you continue to do good work – it was so good to meet you in Baltimore at the HHV-6 conference.

I am inclined to agree with the idea that H2S might play some kind of protective role. Indeed, I brought the idea of fatigue itself being potentially protective to people’s attention at the the CFS Conference in Sydney, Australia in February 1998.

Having done Basal Metabolic Rate (BMR) Studies on 200-400 patients with Fatigue Disorders in the 1990′s, we found that the median BMR was around 80-85% of predicted (ie many patients were considerably lower than this).

By contrast, the lowest one would ever expect for SEVERE hypothyroidism – the classic cause for a reduced BMR – is around 85% of predicted. In other words, the metabolic rate in CFS can be much lower than the worst case of hypothyroidism. Some CFS patients were not so affected, and BMR’s ~110% of predicted were occasionally noted.

I have witnessed very severe consequences following the ‘excessive’ use of thyroxine where the caregiver was endeavouring to increase patients’ BMR’s with T4.

In the case of Klonipin, this particular benzodiazipine has a unique agonistic GABAA receptor subtype profile, so not all GABAA receptor subtypes are activated – only some – with Klonipin – something that should be studied further. Activity of some parts of the brain need to be ‘suppressed, but NOT all.

John L Whiting
FRACP (Inf Diseases and Internal Medicine)

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cort June 24, 2009 at 6:56 am

I was disappointed not to see you at the Reno conference. Fascinating stuff about the basal metabolic studies. I guess that didn’t get into literature (?). Such a striking finding! It sounds like the brain needs more rebalancing than anything else – some parts are too activated and others are under activated.

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Dr Alan Logan June 24, 2009 at 12:47 pm

Thanks very much for this discussion…for some more of the historical perspective, our group in Toronto (led by CFS expert Dr Alison Bested) has been looking at gut flora and CFS for a number of years…recently our group published the preliminary study on probiotics in CFS anxiety (Gut Pathogens, Rao et al.)

also, this below is word-for-word what I wrote in my 2006 book The Brain Diet

“H2S gas production is also a feature of bacterial overgrowth in the intestines. H2S gas can then enter the blood circulation. Although hydrogen sulfide gas is normally readily excreted by the lungs, an effect on the brain over time may be a factor in brain-related symptoms in those with chronic intestinal disorders. H2S entering the lungs, even at tiny amounts (125 parts in one million), has been shown reduce learning and memory in adult animals.”

“When it comes to learning and memory, H2S increases the susceptibility to interference from irrelevant environmental stimuli. Animals, and modern, over-stimulated humans, have difficulty sorting out what information should be prioritized, and what information should be dismissed. In human research, exposure to H2S has been associated with both cognitive and emotional disturbances”.

regarding the overgrowth of lactate producing bacteria I wrote this…

“The most recent study, published in Digestive Diseases and Sciences (2005), showed that a fiber restricted diet significantly reduced abdominal symptoms. In addition, the fiber restricted diet cut the hydrogen and methane gas production by move than half. Dr. Keith Dear and colleagues conclude ‘…the perception by some IBS patients that their symptoms are due to excessive gas may be correct. Treatments aimed at reducing fermentation, such as a low-fiber diet, may alleviate symptoms in many patients.”

“There is also another concern with excessive fermentation in the large intestine, and that is production of lactic acids. Lactate was first discovered and isolated from sour milk in 1780, and it comes in two near-identical forms, D-lactate and L-lactate. The L-lactate is found in the blood of humans because it is produced by our cells in metabolic processes. The D-lactate is present only at miniscule (nanomolar) concentrations in healthy adults. D-lactate is produced inside the colon when remaining undigested carbohydrates are delivered in from the small intestine. D-lactate levels are kept low by the activities of certain intestinal bacteria which convert D-lactate into acetate.”

“Normal gastric emptying, optimal small intestinal digestion and absorption of carbohydrates, and normal intestinal microflora are all prerequisites to keeping everything in balance. If there is poor digestion of carbohydrates in the small intestine, or if for any reason, sugars and fermentable carbohydrates are being dumped into the colon in excessive fashion, lactic acid can reveal its nasty side.”

“The consequences of delivering excess sugars to the colon have been well documented in patients who have had portions of the small intestine surgically removed or bypassed. The colon becomes acidic, acid-resistant bacteria overgrow, and lactic acid production is stepped up more than a few notches.”

When D-lactate production exceeds our ability to clear it, a host of neurological and psychiatric symptoms are the result. While gastroenterologists were writing up their findings about D-lactate induced changes in their patients, researchers in the psychiatric arena were consistently reporting that I.V. lactate can induce anxiety and panic attacks. In 2000, a study in Biological Psychiatry showed that I.V. lactate elicited intense emotional responses in perpetrators of domestic violence. These individuals (both males and females) showed more lactate-induced rage and panic, and showed greater changes in speech, breathing, and motor activity than did non-violent control subjects.”

“While there have been some theories put forward, there is no widely accepted mechanism to explain why lactic acid disturbs cognition and behavior. Could it be that a carbohydrate overload in the colon could induce panic and behavioral disturbances in individuals who have never had intestinal surgery? What about those with intestinal motility problems, what about the research on fructose and lactose malabsorption lowering typtophan and setting the table for psychiatric disorder? Is it really far-fetched that in some folks, unabsorbed sugar and fermentable carbohydrates dumped into the colon in the presence of an altered microflora might be combining to chronically produce more lactate than they can handle?”

“As a brain-oriented nutritional scientist, and as a clinician observing the effects of fiber on certain individuals, I have been asking these questions for a number of years. Apparently, I wasn’t the only one. Dr. Edward Clayton and colleagues from Sydney , Australia , performed an elegant study which showed that fiber-induced fermentation in the colon of rats was associated with increased anxiety and aggression. Writing in the journal Physiology and Behavior (2004), these researchers showed that intestinal lactic acid, both L-lactate and D-lactate, as well as another potentially brain toxic fermentation product called propionate, were all involved in the behavioral disturbances. This study is a massive call to further investigate intestinal lactic acid production in those with brain conditions.”

“In the meantime, if you feel that you are sensitive to dietary fiber, there are commercially available non-invasive tests to examine D-lactate breakdown in urine. See the Appendix for more details on D-lactate testing”.

Best Wishes

Alan

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Pat June 25, 2009 at 12:10 am

I worked in the pulp and paper industry and was exposed to toxic chemicals including hydrogen sulfide, methyl mercaptan, dimethyl sulfide, etc, . I was totally disabled and my career abruptly ended in ’87. At the time, Dr. Yves Alarie, a toxicologist who worked with the Bhopal victims, explained how the S-H bond is able to transport “R” in an R-S-H molecule like CH3CH, across the lung and into the blood stream. Earlier papers described the effect on mitochondrial respiration. I had extreme difficulty just sitting upright for the first few months. I had severe cough, often coughing blood. I also developed severe periodontal disease and had nerves in my teeth spontaneously dying with no obvious decay. In 1996 the SPECT and PET scans showed brain abnormalities. Hypoperfusion was found in sites specific for hydrogen sulfide poisoning. PET scan looked like I had Huntington’s disease, when I did not have that. Natural killer cell activity was very low. I developed severe bone infections in my jaw, unresponsive to antibiotics and surgeries for a year. I finally needed high pressure hyperbaric oxygen to stop the bone infections. The treatment also helped me cognitively and helped reduce the horrible aching in my muscles. Amantidine helped improve my energy. Periodic sessions in a mild hyperbaric oxygen chamber were necessary every few months to lessen the severity of the pain, improve cognition, and improve killer cell activity. The HBO does not fix the problem totally, but it does help me to function better for longer intervals, improved my ability to fight infections, greatly reduced the need for antibiotics.

Papers on periodontal disease were published by Dr. Paul Johnson, Perry Radcliff, et al. and they found hydrogen sulfide and methyl mercaptan in the diseased periodontal pockets. They also found changes in intracellular pH, immune response, changes in DNA and RNA. They were at the UCSF dental school and were limited in their research but knew it extended beyond collagen in the oral cavity. They had my medical info at the time of presenting their work. The work is significant in that it was done on human tissue, and not laboratory mice/rats.

The body typically has various equilibrium reactions, and in my opinion, when there is an overload on one side of the equation, we are not able to rebalace effectively. I did write an Email to Dr. Konynenburg about my thoughts, and the role hydrogen sulfide and methyl mercaptan may play with mitochondrail respiration, NaK ATPase, NK killer cell activity, intracellular pH, etc. and how I believe it is at the root of the illness.

I am unable to take any sulfur based medication as it will bring on the severe aches in all my muscles without any exertion at all. On a daily basis, I do have to pace myself. I use a mobility scooter so I can enjoy some time with family. I have hired help to do the cleaning as I am not able to do what needs to be done due to the energy limitations. I have a portable HBO unit I can now use as needed. I do suspect that the sulfur pathways may be a key for unraveling Gulf War syndrome, Chronic fatigue/ME, Fibromyalgia. I hope that now there will be a joint effort to get the answers and the help we need. No one should have to go through this hell. Thank you for your persistance.
Pat

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cort June 30, 2009 at 8:10 pm

Fascinating stuff Pat! It does make one wonder if many of us have a weak link in our detoxification system. I know I have big problems with mercury (can’t handle fish) and H2S apparently acts similarly to mercury in some ways. So interesting to see the NK cell problems, the help from the HBO chanber and the amantadine show up. Rich certainly feels the two are connected and I hope to interview him about that.

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Mark October 22, 2012 at 6:16 pm

Pat I am currently experiencing problems after a lengthy exposure to h2s-as well as hydrochloric acid gas. I am curious as to what your lung and heart tests showed, if anything…..?

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Beady June 25, 2009 at 4:48 am

Thanks for posting this Cort. Really interesting to read. It reminds me of the movie Lorentzos Oil, where the parents of a boy with a incurable disease starts their own research and find a cure – sadly not in time to save their own kid, but it has saved a lot of other persons lives.

Chris: is it really true that De Meirleir and Cheney are in close contact?

De Meirleir is still relying a lot on glutathione – while Cheney are now almost warning against it. The same with other things… De Meirleir has just started using Oxygen on his patients (I assume that it is because of the recent H2S theories) while Cheney calls Oxygen toxic…

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drew June 26, 2009 at 3:46 pm

Dr Logan, you’re hitting the nail on the head, at least for me. I discovered by trial and error that a “soft food” diet improves my energy and well being. Once I started avoiding raw fruits and veggies, popcorn, potato skins, beans, peas, and other hard-t0-digest foods, my energy level, bowel movements, and acne improved dramatically. It is especially important that I avoid these types of foods within a few hours of going to sleep.

But Cort, you seem to be the OPPOSITE. Eating high-fiber foods has helped you. I’m very glad, but also very puzzled.

Drew

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cort June 30, 2009 at 8:11 pm

Some do- I think raw foods are really helpful for me but too many cooked vegetables and grains do not work well for me.

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Diana June 30, 2009 at 7:17 pm

This makes perfect sense to me. Ill since 1990 (viral onset) I have to eat a fiber restricted diet or I become very ill. For several years I subsisted on a very few foods that didn’t put me in bed trying to digest them. I always knew that my gut was affected by CFS, and a flare was always accompanied by severe bloating, burping and indigestion, but I never considered the gut to be the source until I had to take a long, long course of antibiotics (Cleocin) for my constant sinus infection.

Three months (and one severe bout of antibiotic-induced colitis) later, I slowly regained my strength (I had lost 10 lbs in one week at the end) and afterwards my CFS was markedly improved for the first time. I had more mental clarity, less fatigue and less pain. Mind you, this is after a very slow recovery from the colitis, during which I was on a strict diet of white rice and boiled chicken only. I joked at the time that maybe the antibiotics had cleared up my gut and that’s why I felt better. All these years later I know that my gut and my CFS are tied together.

All of my earlier, comprehensive study of nutrition and health foods never helped once I came down with CFS. I could not even digest a vitamin. I was in new territory. I learned what foods to avoid the hard way. My diet remains somewhat restricted, mostly no whole grains on a daily basis and I can’t eat raw veggies and many cooked veggies.

My drug intolerances remain the same since I became ill. Overly sensitive to almost everything in the pharmacy, even benign drugs.

The last point I wan to make is that I finally went on xanax for panic disorder, which worsened with CFS. Xanax had an immediate stabilizing effect on my gut and brain fog. I take very small doses and it still keeps most of my IBS at bay and helps in digestion. I understand that Xanax also regulates the gut like Klonopin. I wouldn’t go without it. I also have a lot less chronic pain, although I do still have acute recurring pain in many areas and exercise intolerance.

I just hope that there is a discovery while I am still alive (I am 56) as I have been “unwell” for most of my adult life, sigh…

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Beady July 2, 2009 at 4:28 am

Cort: “wonder if many of us have a weak link in our detoxification system.”

As far as I understand, De Meirleir definitely thinks so.

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Lynda July 3, 2009 at 8:24 pm

I do feel that most of us have weak detoxification systems. I recommend going on a 100 per raw diet.Its a hard diet to do, however it is worth it. I’m on week seven, and although my detox has been severe at times, I can now see big improvements in symptoms. It will not happen over night, however with patience you will see some improvement, and hopefully a remission.

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martin July 17, 2009 at 3:20 pm

So how does this theory tie in with the epidemic form of ME? The only way I can see it tying in is that after the initial viral CNS damage or alteration, the brain is dysfunctional (like goldstein’s theory) and one of the disfunctions is an increase in H2S.

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Pat August 1, 2009 at 12:55 am

I believe the brain is not the source of the hydrogen sulfide, but is poisoned by it as it is able to cross the blood brain barrier. The damaged parts of my brain are typical of what is described for areas attacked by H2S.

In April, my daughter found 2 bug bites on her thigh, and the center became black and swollen. We suspected a brown recluse or black widow spider bite, but she never saw what bit her. Suddenly the site began to hurt, felt like pins and needles, then began travelling down her leg, and finally spread all over her body. We went to the ER and she was put on antibiotics for possible MRSA. The antibiotics did nothing, and her blood pressure was dropping, and her muscles and joints became very painful. She went from putting in 11 hour work days, to being unable to walk half a block.

ELISA test indicated Lyme. Western Blot for Lyme was negative. Because of her symptoms. treatment was begun for Lyme with a month on Doxcycline, and medications were given to bring her systolic out of the low 80s to the 90′s. Her fatigue with exertion is profound and she is only 29 years old. She is also on Gabapentin for the nerve ending pains. It all began after the bite. Her symptoms have the charisterics of what many describe. We tried the low pressure hyperbaric (1.3 ATM) to see if it would help her as it did me. Cognitively, she felt it helped and a bit energy wise, but it is not a dramatic improvement. I looked at the papers dealing with Lyme, and there were recommendations that the hyperbaric pressure needs to be at about 2.39 ATM, plus appropriate antibiotics. Again the literature for Lyme recommends a different antibiotic if the CNS is involved. However, we need a positive Western Blot to proceed. It can take 6 months for that to show positive, and the window for successful treatment for Lyme is said to be 8 to 12 weeks. We are between a rock and a hard place. There are also reports of different families of the bacteria for Lyme, and Western Blot does not look at all of them. Somehow, I believe her system may have been under attack from a venom from a spider. Her body response to the toxin was of shock lowering her blood pressure, and of a reaction to the toxin that may be a dysfunction of the sulfur methylation cycle, poisoning her cells further. They say she is low on a muscle enzyme, but the doctor is unsure of what that means. Her cortisol levels are high, but adrenal gland is OK.

I am looking forward to seeing the Whitemore Peterson Institute open to give some insight into this matter, and joining forces with other researchers to pin this down. She has her whole life ahead of her, and this is difficult to deal with. She is on medical leave and unable to return to work at this time. Do we have insects as carriers of bacteria causing more chronic fatigue cases. The bug that causes Lyme has some peculiar defense mechanisms that make it hard to detect and also hard to treat. It needs a lot of effort to get an answer, and a medical team to address it.
Pat

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