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sallyB

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Posts posted by sallyB

  1. 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

  2. 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

  3. 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

  4. 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.

  5. 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.

  6. Many thanks for the welcome,

    I am still reading all the imformation amd posts and learning from you all. as i am mostly housebound, the internet and forums like this have saved my sanity!!! I am 40 years old and used to be a florist before this illness took over. I am seeing my consultant next month, so I will be going armed with loads of questions, thanks to this site. take care everyone. sally B

  7. Hello to everyone.

    I have been ill since 1999 with ME/CFS, and this week had a positive tilt table test and have been diagnosed with POTS. i have been reading all the imformation and posts, and the symptom list could of been wrote for me. The doctor has started me on a beta blocker called metoprolol 25mg a day and to increase it to two a day, which I tried and felt dreadful. Have many people on this forum have a diagnosis of ME/CFS as well. I feel as if I have been on a rollercoaster since this illness and have tried everything to get well again, so finding this site has been great, at least i know what POTS is as my doctor didnt explain it very well. So once again hello, and I hope everyone is doing as best as they can today. Sally.

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