At a recent press conference Dr. Kenny De Meirleir announced some interesting findings regarding Hydrogen Sulfide's (H2S) role in Chronic Fatigue Syndrome .
Thanks so much for all the links. Interesting. Although it may still just one piece of the puzzle for some CFS/ME patients (and even for lyme patients), it could be a major breakthrough.
Test cost: 15.00 EUR = 21.2049 USD
That's very sweet news. Less than international shipping would be.
What they say about heavy metals and not being able to detox is very interesting. Finally, someone's getting it.
Excerpt: "In its final stage aberrant transmissible prions develop which put the patients in a total energy depleted state."
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Posted by emla999/Lyme (Member # 12606) on :
Keebler,
I agree. This is probably just another piece of the puzzle. It sure is interesting though.
I also found something else interesting about Hydrogen sulfide's (H2S) connection to CFS.
A mother and layperson by the name of Marian Dix Lemle discovered the connection between Hydrogen Sulfide/CFS before Dr. De Meirleir.
Posted by emla999/Lyme (Member # 12606) on :
When gut bacteria or fungi are attacked by something like a heavy metal molecule (e.g. mercury), they have a special defense mechanism (called a "resistance gene") that produces Hydrogen Sulfide (H2S) gas, which binds to the attacker and neutralizes it.
Subsequently this highly toxic and poisonous H2S gas is created in the gut. H2S can impair the immunity system, especially in the area of neutrophil function, which is used to fight the original yeast in the gut, and hence one can hit a vicious cycle.
H2S is very similar to the heavy metal mercury, in that it can bind to many of the things that mercury binds to and inactivate them.
In other words, all the bad things that mercury can do, as described here, H2S can do. H2S can also convert the safer Inorganic mercury to the more dangerous Organic mercury, as described here.
H2S has a very special circular relationship with the heavy metals; and therefore, it is a very special gas.
Posted by LymeCFIDSMCS (Member # 13573) on :
I found this really interesting mainly because he's one of the only researchers who has bothered to study the severely ill patients (like me). Generally, those at my level aren't included in studies because we can't get to the study!
It does seem to be a bit of a chicken and egg thing, however. The abstract just casually mentions local energy production could be causing the hyperpermeable gut he's talking about, and the leaking hydrogen sulfide could in turn impair mitochondrial functioning. But there are other theories (Dr. Sarah Myhill, Dr. Paul Cheney) that mitochondrial issues are the crux of the problem.
So it's hard to know what to do with this. Can one repair the gut if the mitochondria are malfunctioning? And what is causing the mitochondrial issues or leaky gut to begin with? And which one comes first?
Posted by LymeCFIDSMCS (Member # 13573) on :
Okay now I am looking at the slides from the presentation. His treatment strategy seems to involve, in part, killing microorganisms -- it seems with antibiotics as he cites some antibiotic studies for ME/CFIDS and Gulf War Syndrome but he also talks about viral and fungal infections. Plus eliminating metals and doing immune system and hormone balancing.
Nothing that new in the treatment strategy and it seems like what people are doing for Lyme would work.
What else beside L-glutamine is one supposed to take to improve gut permeability?
Posted by asus (Member # 13881) on :
So... one has to ask the question, does this test pick up something different than what the more typical H2S breath test that is given by Drs for "SIBO" picks up?
Posted by m0joey (Member # 13494) on :
At this point, CFS researchers are far more helpful for pointing our physiological mechanisms than for treatment. Their treatments are all stuff that's been around for years... the best meirleir ever came up with was using VSL#3, but we've already found progurt by now..
Posted by sunnymalibu (Member # 9586) on :
According to Prof De Meirleir "Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame.
My doctor is having me do a stool sample to test for these bacteria so we can target the antibiotic treatment, instead of just haphazardly taking antibiotics that are not necessary or are not treating the right infection.
The antibiotics are vancomycin and some other strong antibiotics.
Does anyone know how long one needs to be off of antibiotics before a stool sample. My doctor told me three days but I've read on the Internet from 7-14 days. I don't' want to have to do it more than once.
Posted by m0joey (Member # 13494) on :
Rich Van Kroyenburg did a great summary of going theories about H2S. I emailed him to ask if I could post it here...but it's on prohealth's board right now
Posted by Myco (Member # 9536) on :
Funny, Prions were mentioned to me by a very good intuitive. Good theory, but what is the cure???
Seems these guys are great with coming up with theories but offer no real treatment.
Posted by aiden424 (Member # 7633) on :
I was wondering the same thing!! I actually have more CFS symptoms then lyme. I have severe exercise intolerance. I never hear of anyone with lyme having this problem.
Posted by Blackstone (Member # 9453) on :
Nice to see that some CFS researchers are finally seeing there is a pathogen cause, not simply an "out of the blue" immune issue.
Posted by seekhelp (Member # 15067) on :
Aiden424, I have that problem too. You're not alone. I question if Lyme is causing it based on reading others' stories here about being able to exercise fine.
Posted by m0joey (Member # 13494) on :
Aiden424--I do as well.
Posted by nomoremuscles (Member # 9560) on :
aiden and seek,
I am another one with full blown CFS at this point. My exercise intolerance is very bad. When I say exercise, I mean I cannot even gently flex a muscle without paying dearly for days. Forget about REAL exercise. I can barely stand up for more than a short time. Taking a walks is out of the question. For me a walk is from the kitchen to the bedroom. I can't go up and down stairs, and have not been able to do any chores, laundry for instance, for a few years now.
I started out with acute neuro Lyme in the mid '90s, which, with standard treatment, slowly resloved to a large extent. But then my gut went south, and the CFS crept in. It was a slow progression. At first I had to limit my heavy exercise, then any exercise, then work, then movement of anykind, etc. From that time forward any abx trx only has made me worse.
I've been positive for Bb, bart-h, babs-m, myco-p, myco-f, EBV (biggest titer doc has seen in 20+ yrs.), HHV1, HHV6.
I think this all is connected to the gut and the gut bugs, though from there I am blank.
Posted by ukcarry (Member # 18147) on :
I too sometimes feel as if I've got something else when I read that many people with Lyme seem to be able to exercise, go for walks, go to the gym.
My chronic fatigue symptoms, however, started a long time ago [20 years with continuous symptoms, many more with intermittent],whilst my gut has only been in a really bad way for the last few years [despite high dose probiotics for 10 years].
I've taken various abx over the past year without success as yet [and Doxy for 3 months 2 years ago].
Yes, I'm pretty sure it is all connected with the gut and gut bugs and therefore the immune system.
Posted by R62 (Member # 18531) on :
I was not this way until I had abx and my gut blew out. The CFS has been progressively worse the last year.
What is the proposed treatment? Focus the gut?
Posted by R62 (Member # 18531) on :
Is the metametrix GI panel the best for overall detection of bacteria as well as parasites in this situation or another panel?
Posted by m0joey (Member # 13494) on :
Yeah that is the best overall profile. However, many of the problems we have in the gut are due to digestion at the stomach level (lack of acid). The pancreas is often overlooked, but it produced many enzymes necessary for digestion. An impaired gut can be the end result, and taking the strongest probiotic in the world may not be sufficient without addressing all the enzyme deficiencies
Posted by aiden424 (Member # 7633) on :
I didn't start having bad stomach problems until about 6 years a go. I didn't know I had lyme and hadn't taken any antibiotics yet. I'm now on 3 different stomach meds.
Posted by LymeCFIDSMCS (Member # 13573) on :
I have severe exercise intolerance too.
I think severe exercise intolerance is what distinguishes CFIDS from other illnesses (including Lyme), period.
The Canadian Case Definition agrees. The US case definition for CFS is totally bogus at this point, watered down so that real ME cases would be lost in a crowd of people who have vague fatigue complaints.
The CDC website on CFIDS, however, does talk about this, and also talks about delayed crashing -- that is, that for many of us the "payback" for exertion is delayed 24-48 hours after the activity.
I definitely think those with exercise intolerance are dealing with an entity beyond Lyme. I will be proven wrong if antibiotics cure my 17 years of CFIDS but so far they're just hitting the Lyme and bartonella that I contracted in recent years.
Posted by emla999/Lyme (Member # 12606) on :
I just found this.
The Hydroxocobalamin form of Vitamin B12 may be an antidote for Hydrogen Sulfide (H2S) toxicity.
So, if Prof. De Meirleir's hypothesis about H2S is correct then maybe Hydroxocobalamin would be beneficial for people that have Chronic Fatigue Syndrome.
Posted by R62 (Member # 18531) on :
Thanks, Joey and Emla.
At least the hydroxy b12 is part of the methylation protocol.. I think the yaskow group is seeing this as part of the puzzle in that regard.
Posted by gothbubbles (Member # 20280) on :
This is really cool! I hope it leads to treatments that will help get my life back.
Sick at 18, 9 years sick. I don't know if I have Lyme yet, but now I maybe if I'm neg for lyme CFS isn't a dead end!