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Cfs And Pots


sallyB

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Hi to everyone,

I have had me/cfs and POTS for a long time and have recently come across new research from Prof de Meirleir, he has developed a urine test for hydrogen sulphide which he says is a major cause of me/cfs.

I had major digestive issues before i fell ill, so I have took the test and it came up positive and in the severe group. I also bought one for my partner who is healthy and his came up negative.

More info and where to get the test is here,

www.proteabiopharma.com for the test

www.aboutmecfs.org

If you search for hydrogen sulphide and cfs there is a lot of info on the net.

He talks about how toxic hydrogen sulphide is to the autonomic nervous system and what damge it causes.

And it is caused by bad bacteria in the gut, which raises d-lactate levels, then the problems begin.

I have been taking a d-lactate free probiotic now for 2 months and already seeing a big difference in my symtoms, the acid reflux has nearly gone, food reactions have calmed down, especially to gluten.

I know there are a lot of people with the diagnosis I have who are taking this test and coming up positive, so maybe this doctor is on the right track.

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Hmmmmm. I'm curious, but skeptical. My son is DXed with NMH/NCS and CFS. He sees Dr. Peter Rowe at Johns Hopkins who runs the Chronic Fatigue Clinic. Mack does have slowed GI motility and has had bacterial overgrowths. That's when you would see the hydrogen sulphide that you speak of....and he does take a daily probiotic to prevent the SIBO's (small intestine bacterial overgrowths.) Soooooo, I see the connection in my son BUT I've not seen anyone connect the dots in the medical literature.

Dr. Rowe linked autonomic dysfunction to CFS. He found that 90% of CFS patients have an autonomic dysfunction. Coincidentally, I do know that many of Dr. Rowe's patients also have slowed GI motility and subsequent SIBO's. There might be something there, more like a correlation or a link rather than a causation.

I think the autonomic dysfunction causes the slowed GI motility, which in turn cause the SIBO's and high levels of hydrogen sulphide rather than the high level of hydrogen sulphides causing CFS. I'll do some googling & check it out.

Julie

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Interesting. Sounds like a reasonable thing to pursue. The known symptoms certainly cross over to POTS/CFS realm. The "chemical sensitivities" factor is intriguing. Thank you for the link. Please keep us updated on your progress. I hope your symptoms continue to subside.

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Kenny De Meirleir : ME/CFS, hydrogen sulfide and aberrant prion disease - Presentation Transcript

Myalgic encephalomyelitis: A highly prevalent debilitating disease ? Persistent, debilitating fatigue associated with numerous physical and neurocognitive symptoms Disease severity can range from moderate to extremely severe: patients bedridden for years, totally caregiver dependent ? Prevalence estimates: 0,3 to 0,6%; one million patients in the USA, two million patients in Europe This may just be the tip of the iceberg ? High socio-economic cost Cost to the society estimated as approximately $16 billion in the USA, ?20 billion in Europe

Intestinal disorders in ME patients ? Patients usually present with multiple intestinal symptoms including: Nausea Abdominal pain Poor appetite Abnormal bowel motility Gastric reflux Bloating ? Inflammation of the gastrointestinal tract ? Marked alteration of the intestinal microbial flora

Alterations of intestinal microflora (aerobes) ? Enterococcus and Streptococcus species are strongly over-represented in ME patients : Organisms Control ME patients p-value E.coli 1.0 x 108 4.26 x 107 p=0.98 Enterococcus spp. 5.0 x 106 3.5 x 107 p<0.001 Streptococcus spp. 8.9 x 104 9.8 x 107 p<0.001 Henry Butt, University of Melbourne

Alterations of intestinal microflora (anaerobes) ? Among anaerobic bacteria, Prevotella is the most consistently overgrown bacteria : Organisms Control ME patients p-value Bacteroides spp. 3.2 x 1011 1.6 x 1011 p=0.39 Prevotella spp. 1.0 X 108 9.0 x 109 p< 0.001 Bifidobacterium spp. 6.0 x 108 5.5 x 109 p=0.001 Lactobacillus spp. 2.7 x 107 1.8 x 108 p=0.002 Henry Butt, University of Melbourne

Bacterial overgrowth correlates with symptoms severity ? Enterococcus spp. counts correlate with symptom expression : Symptoms r and p-values Headache r=.17, p<0.01 Arm pain r=.20, p<0.003 Shoulder pain r=.15, p<0.04 Myalgia r=.20, p<0.003 Palpitations r=.16, p<0.02 Sleep disturbance r=.20, p<0.004 Henry Butt, University of Melbourne

Bacterial overgrowth correlates with symptoms severity ? Streptococcus spp. counts correlate with symptom expression : Symptoms r and p-values Post Exertional fatigue r=.15, p<0.03 Photophobia r=.14, p<0.04 Mind going blank r=.17, p<0.01 Cervical gland lymphodynia r=.14 p<0.04 Palpitations r=.15, p<0.03 Dizziness/Faintness r=.14, p<0.05 Henry Butt, University of Melbourne

Hydrogen sulfide produced by bacteria works as a potent toxin for the body ? Hydrogen sulfide (H2S) has important physiological functions... H2S is produced by the cells and is an important gaseous signal molecule, involved in regulation of blood pressure, neurotransmission, muscle relaxation and regulation of inflammation ? ...but exogeneous exposure can be extremely toxic In excess, H2S acts as a mitochondrial poison. It can directly inhibit enzymes involved in the cellular production of energy. H2S also interferes with oxygen transport by blocking hemoglobin in the red blood cells. Enterococcus, Streptococcus, Prevotella are strong H2S producers

Cumulative effects of H2S and heavy metals Gut Gut barrier Cell Strep t E N Other gaseous T Mold E mediators : NO. CO. Fungi R O ATP H2S E. coli H2S Mitochondria CH3 CH3 Bacteria S S CH3 CH3 M S S PRPC PRPDX M M M M (metals)

Heavy metals interfere directly with energy production Extracellular NO. + O2.- S S H S - R-S Oxidase . Cu2+ S ONOO S S H Plasmamembrane Q10 Intracellular Krebs cycle NADH ATP Adapted from James Morr? 2006 J Inorg Biochem 100 2140-2149

Genetic and environmental factors contribute to aberrant protein conformation C PR P PRPDX Genetic Environmental Acquired Mutations Heavy Metals PRP DX

Abnormal conformation can be transmitted from one cell to another PRC Metals PRPDX Cell Cell Cell

Disease severity in ME is associated with different physiological dysfunctions I II III ?Pre-ME? Moderate disease Severe disease Dysfunctions Abnormal faecal test, high H2S Abnormal faecal test, high H2S, Abnormal faecal test, high exposure to heavy metals H2S, exposure to heavy metals that has caused aberrant protein conformation (APD) Symptoms No fatigue, possible gastro- Fatigue, gastro-intestinal Strong fatigue, multiple intestinal symptoms. Low VO2, symptoms symptoms slow recovery. May be asymptomatic Treatment Restore the gut: probiotics Restore the gut: probiotics, Difficult. Gut restoration, metal enterocoated antibiotics. chelation. Treatment of Metal chelation, Zinc associated dysfunctions supplementation (opportunistic infections). Treatment of APD is still experimental Increasing immune dysregulations (depressed T and NK cells, Th17 activation, opportunistic infections?)

Immune alterations resulting from intestinal dysfunction Protection against Dysbiosis causes a decrease TH1 intracellular pathogens of CD8+ cells and TH1 immunity cells (viruses, bacteria) IL-12 IFN-g Na?ve IL-4 Protection against TH2 extracellular pathogens T cells cells (parasites, bacteria) TGF-b + IL-6 TH1 downregulation allows increased TH2 and TH17 Local immunity TH17 (mucosa, skin) Protection against cells fungi, bacteria

Consequences of altered immunity ? TH1 decrease favors the development of opportunistic viral infections HHV-6, Epstein-Barr, parvovirus B19, enteroviruses are found in ME patients. Gastro-intestinal mucosa is a major site of infection ? TH2 increase favors the development of allergies ? TH17 increase promotes inflammation, autoimmunity, blood-brain barrier disruption Genetic background plays a role in TH17 upregulation Polymorphisms of IL-17F, IL-6, TLR4, TGF-b genes are associated with ME and other intestinal diseases (Crohn?s disease, UC, IBS)

Patient evaluation ? Urine test for marker associated with H2S production ? Intestinal microflora evaluation ? Heavy metals analysis ? Presence of proteins with abnormal conformation ? Assays evaluating subsequent immune dysfunctions (immune dysregulations, opportunistic infections...)

A marker associated with H2S production can be measured with a simple urine test 1. Collect urine 2. Open tube containing 3. Add a few drops of urine test reagent to the test reagent 4. Mix by shaking gently. 5. Observe color changes. Dark color = positive sample Wait for two minutes Negative or Moderate Severe Pre-ME disease disease

A specific microbiological assay can determine gut microflora populations ? Investigation of the microbial flora of the intestinal tract - Quantifies major aerobic and anaerobic bacterial groups and yeast - Focuses on dysbiosis (imbalance of the intestinal ecosytem) rather than digestive analysis to ascertain gut integrity ? Challenge: keep anaerobic bacteria viable for analysis - Validated oxygen-free, temperature controlled collection and shipping system

Microbiological assay : sample result ? Patient presents increased Streptococcus, Enterococcus, and Prevotella

Heavy metal analysis : sample result ? Patient presents mercury and nickel intoxication

Abnormal protein conformation assay ? Aberrant luminescence response indicates abnormal conformation

CONCLUSIONS ? Gastro-intestinal dysfunctions play a central role in the pathogenesis of ME ? Dysbiosis detrimental effect mediated by increased production of H2S ? Immune dysfunctions and opportunistic infections arise as a consequence of pre-existing intestinal problems Once established, infections will contribute to the maintenance/aggravation of the disease

Acknowledgements ? Henry Butt at the Bio21 Institute, University of Melbourne ? Marian Dix Lemle, Independent Researcher, Washington DC Med Hypotheses. 2009 Jan;72(1):108-9. Epub 2008 Sep 16. Hypothesis: chronic fatigue syndrome is caused by dysregulation of hydrogen sulfide metabolism. Lemle MD.

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hi,

It seems is is the type of priobioctic and bacteria that is so important, no lactic acid producing bacteria.

i have took many probioctics over the years with no success, this is the first time i have used a d-lactate free probiotic, I have also cut out anthing containing, sugar, glucose or FOS, which the bad bacteria need to ferment in the gut.

I have also started b12 hydroxcobalmin drops as this is a hydrogen sulphide scavenger,I used to take methylcobalamin sublingual tablets, as my level was so low, but I dont have pernicious anemia, but this research could explain why it was so low.

kath

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This was very interesting.

Early on the road to figuring out my problem (back in 1994) my doctor did test me for heavy metal.

I would be a little cautious since the doctor doing this research also owns the company that makes the test....posible conflict?

It would be interesting if several of us ordered the kit and see what happens.

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I agree with Mack's Mom's post. I have also been diagnosed with small intestine bacterial overgrowth (SIBO) which measures the hydrogen sulfide and carbon dioxide(? I forget) in your small intestine.

I take Xifaxin 2 pills/4X/day for 10 days every 3 months. My personal reaction to the OP is that the gut dysmotility is really the problem for me, so by taking ABX, I'm not really giving myself a permanent fix.

I also do not (as of yet), notice a correlation between my fatigue and POTS symptoms, and my treatment regimen.

I am due for another course of Xifaxin in about 1 1/2 weeks. If you are interested, I'll let you know if there are any changes to my POTS and fatigue issues after treatment.

My opinion is, it sounds good, but apparently there are other issues causing symptoms in me, not just SIBO. But, I maintain an open mind and realize that I had years of untreated SIBO, and it may be proven that those years caused neurological damage in me?! I do recall that people with SIBO may not be getting all the nutrients from the food they ingest. Some people with SIBO lose weight, for example.

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I googled it and the test is relatively cheap - $20. Where do you get it from? And where do you get the particular probiotics. Are there any specific brands to use? Not sure I will do it, but just curious.

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Hi,

Regarding the probiotics, most brands have lactic acid producing bacteria, one report I read, recommended one called Align, which I cannot get in the uk, eventually I found one by custom probiotics, and found a supplier in the uk, www.gutdoctor.co.uk,

It is expensive, but I just could not cope with my stomach issues anymore,

My treatment by the nhs in the uk for me/cfs, POTS has been dreadful, it was a struggle to get a tilt table test, I was bedbound for 3 years,and it took another 4 years to get a tilt table test which was positive everytime they did it, my treatment was beta blockers, and was told sorry we dont know what caused it, hopefully you will get better, with no follow up appointments. I was left to find out what POTS was by myself.

I knew my illness first started in the gut, thats why I am so hopeful of this new urine test.

This is prof meirliers most recent research paper

http://www.cfids-cab.org/rc/Sheedy.pdf

kath

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Dang. "Align" is OTC here I think:

http://www.costco.com/Browse/Product.aspx?Prodid=11467445

Maybe costco website will let a shipment slip through the cracks and make it to UK?!?! I've ordered stuff that is in "unregulated limbo" from the UK to the US... items that are technically illegal to sell or prescribe here but are perfectly legal to purchase & possess individually. Is there a chance of a reciprocal situation? No way "Align" is scheduled like a narcotic or anything! :)

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Here's the H2S specific spinoff of that other article above (which mentions other potential causes too). It mentions Kefir as a cheap probiotic source:

"CFS - hydrogen sulphide, gut bacteria and mitochondrial dysfunction June 2009"

http://www.drmyhill.co.uk/article.cfm?id=452

"Probiotics - we should all be taking these all the time and double the dose following antibiotics and gastroenteritis - updated November 2006"

http://www.drmyhill.co.uk/article.cfm?id=378

(The "Kefir Store" link seems to be broken, but the author offers her email & phone number... and recipe... and she's in UK)

http://en.wikipedia.org/wiki/Kefir

Maybe Mead would work too :)

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This was very interesting.

Early on the road to figuring out my problem (back in 1994) my doctor did test me for heavy metal.

I would be a little cautious since the doctor doing this research also owns the company that makes the test....posible conflict?

It would be interesting if several of us ordered the kit and see what happens.

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Hi everyone,

I have POTS and ME/cfs and i'm a patient of prof. K. de Meirleir. But i want to warn you that the hydrogene sulphide test is not a really reliable test. I follow his threatment for almost 6 months now, but i only feel a lot worse than i was before. He told me i have an overgrowth of enterococcus (which produce a lot of h2s) and he gave me antibiotics and probiotics for 6 months but he never let me do the h2s-test. So this morning i did the h2s-test by myself and it was negative!! And i know a lot of other people in the netherlands and in belgium that did the test, and some of them get a positive result while they're not sick at all or didn't have a bacterial overgrowth, and some of them are really sick and get a negative result of the h2s-test too.

But maybe his treatment and tests do work for some people, but i just want to warn you.

Daphne

p.s. I'm from the netherlands, so my english is not so good, i'm sorry for that.

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I did a search on Align and it contains bifidibacteria, which produce lactic acid...

Align contains Bifantis (Bifidobacterium infantis 35624), a patented pure-strain probiotic bacteria that helps naturally balance your digestive system.*

http://www.aligngi.com/information-on-Alig...otic-supplement

Bifidobacterium longum, a lactic acid-producing intestinal bacterium inhibits colon cancer and modulates the intermediate biomarkers of colon carcinogenesis

http://carcin.oxfordjournals.org/cgi/conte...stract/18/4/833

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Hi

This is the one I am trying which is d-lactate free, expensive, so i am trying to find another brand in the uk.

http://www.customprobiotics.com/custom-pro...s-d-lactate.htm

Daphne1 could you please let me know which probiotic and antibiotic prof meirlier treated you with, as I am really interested as I know quite a few people who are trying to follow what he recommends,

kath

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daphne1, i am from the netherlands too and wanted to let you know that your english is perfectly well! welcome at the forum! as i don't want to interfere in this topic, i'll send you a personal message (later today as i'm having visitors). hope you (and everybody else of course) are okay!

take care,

corina :)

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I was starting to beleive dr myhill's site and the information there until............the site was linked to one those 50 page infomercals that was only selling some crap longevity program. I understand why we can't regulate companies and "non-drugs" like this, so buyer beware. Don't get sucked into these silly programs and waste your money.

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Todd,

You are so right with buyer beware. And I wasted a good amount of money trying different things.

In my particular case, my gut problems preceded my POTS problem. I have also been told I have SIBO and have been diagnosed with irritable bowel syndrome and GERD. My gastroenterologist suggested the probiotics because of my diagnoses.

So, in my case, it seems plausible that probiotics could be beneficial to my health. That's why I'm trying them without testing specifically for the hydrogen sulfide beforehand. I have a known problem and I'm looking to get better.

I'll let you know.

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Hi,

futurhope, yes it was the treatment that worsen me a lot. I'm trying antibiotics, probiotics and some supplements(vitaminB12-injections, chlorella and lipothion)

sallyB, the medicins that prof de Meirleir prescribes are adapted to each individual situation. If you tested positive to the hydrogensulphidetest, you also need to get some other tests done to know of which bacteria you have an overgrowth in your gut and of which bacteria you don't have enough in your gut, based on that the professor gives everyone an individual treatment. In my case the tests showed that I have to much enterococcus, e.coli and prevotella and not enough lactobacillus and bifidobacterium. Based on that i'm following this treatment:

month 1: first 8 days of the month amoxicillin(antibiotic), other days of the month enterol(probiotic)

month 2: first 8 days clarythromycin, other days enterol

month 3: first 8 days amoxicillin, other days enterol

month 4: first 10 days erythromycin enteric coated, other days lacteol

month 5: first 15 days special made vancomycin enteric coated (only available in belgium), other days lacteol

month 6: first 10 days erythromycin enteric coated, other days lacteol

month 1-6: also the supplements that I mentioned above.

But again, this is a really individual treatment!

I'm also a member of a dutch ME/cfs-forum, there are a lot of other patients of prof de Meirleir. It would be very interesting to read for the people who want to know more of prof de Meirleir, but unfortunately it's in dutch, so you can't understand it I think:S

corina, nina told me that you're from the netherlands too. ?'m looking forward to your message!

Daphne

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Daphne,

I once went to an alternative doctor who specialized in helping me get rid of the excess yeast in my gut. I was taking some vitamins, had taken a specific antibiotic against yeast, and was taking a probiotic. These were the doctor's recommendations.

Unfortunately. the above regimen landed me in the emergency room of a hospital thinking I had appendicitis.

So I am aware how some of these "cures" can make me worse.

For me, I can never start too many new things at once. Since I'm sensitive to many things, I have to try one at a time.

Also, one of the antibiotics you were given, Erythromycin, makes me very sick, even in small amounts.

It's difficult to decide what to do. We all want to feel better.

Let us know what you decide to do, okay?

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Hi

Dr Myhill is one of the good guys in the uk, and there is not that many! she treats a lot of me/cfs people. She works with your GP, but is so busy she is not seeing anymore new patients but I think you can still get the tests through her, I am going to see if i can get the gut tests.

The first week on the d_lactate free probiotic was not very pleasant, I was so bloated and I thought my stomach would pop! I should of gradually built up to the large scoop but was too eager. But since then I have seen such a change in my gut. I lived on zantac, antacids anything to stop the acid reflux, my stomach felt raw, it had got to a point where all food was afecting me, it has not totally gone away yet, this is the 2nd month I have been on it. But it has definitly made a difference.

The problem in the uk is there are hardly any doctors who know anything about POTS, so it was a godsend to find this forum, I am going to give the probiotics a good sixmonths,

kath

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