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About sallyB

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  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
  2. 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
  3. 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
  4. 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. ka
  5. 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
  6. 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 tal
  7. 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
  8. 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
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