Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by justy, Jul 14, 2011.
I think the number would be millions. Not thousands
I agree with this, although also the other posters have a point about being frustrated waiting for the professionals and thus the need to take things into our own hands at times. This is an increasing phenomenon I think in the internet age, it is not just about CFS or our problems, this is happening universally as individuals more and more can learn information professionals used to keep as guarded secrets. But there is something also to be said for a clear thinking professional who has both the clinical experience and knowledge to take us seriously. Sadly though there are far too few of them out there. I think we are living in an age where we have the gift of information and should use that to help speed things up, but also I agree with what IVI implies, that we need to interest some professional researchers in what we discover collectively, if we want to really make a difference to all the sick CFS patients. So who would find this topic of interest?
I can think of two researchers, Larry Klapow, for the roundworm angle of what might be happening with Vermox. Maybe he should know his work has been talked about again, personally I don't think there has been enough discussion or interest in his work in the CFS community. Better late than never. So since I emailed with him about his research a few years ago, I just emailed him again, will post anything he says back.
Second would be Amy Myhill, for the possible ATP-boosting angle, I'll bet should would find this possible Vermox treatment interesting. I don't know her, but maybe someone here who knows her can pass along the address of this thread?
I had briefly suggested in a previous post something that might be the way forward:
there is the problem of 'credibilty of the reporter' (lone M.E/CFS patient = not credible in scientific bureacracy terms) and perhaps this is something PR could take on as an advocy project ? A simple report of "this is what contributors to the PR forums have said about incidental effect of treatment with mebendazole, we think that perhaps it raises some issues which may be of relevance to your research" - possible contacts would include the manafacturers of Vermox and the authors of the various papers quoted in this thread plus any M.E/CFS researchers who have an interest in metabalism.
I think the position can be deconstructed in the following way:
Process of effective communication
1. a entity (Individual, Institution or Business) who/which has access to attributable resources is to be encouraged to pursue a line of research of specific character.
2. the entity is not amenable to demand i.e no legal, political or moral obligation can be enforced.
3. given the condition at 2. the relevant party can only be encouraged to pursue research where it has an established interest ongoing related or adjunct research, or active profit motivation.
4. the conditions at 3. define parties which operate primarily in terms of contract such that a high degree of scepticism is applied to any external approach which is itself lacking in demonstration of either the availability of resources or the prior commitment of resources at a scale comparable to that expended by the entity which is being encouraged to undertake research of a specific character, allowing or requiring a contractual relationship between resourcing parties. (in simple terms either money or work product has to be on the table, work product has to be from a validated source)
5. the condition at 4. limits what is achieveable by a low resource, non expert communicant. Any contact that is made with a qualifying entity (Individual, Institution or Business) has therefore to made with awareness of the likely scepticism that any communication will arouse. The only likely effective strategy is a small target approach the more frugal the commucation, the less material there will be to feed scepticism. Which basically means an unalloyed, unqualified report of observed phenomona, absent of any claim, interpretation or request.
I just spoke to the girl, who claims that after years of suffering she was totally cured by few rounds of antiparazitics: albendazol, ivermectin and praziquantel.
Is there anybody who has a similar experience?
Really ? I would love to read her story ... are her postings online or is this an offline contact of yours ?
I took the triple antibiotic therapy (secnidazole, nitazoxanide, furazolidone) for blastocystis hominis recommend by the Centre for Digestive Diseases in Sydney (www.cdd.com.au) 2 years ago.
The drug combo was an absolutely horrendous experience -- BUT -- I had what seemed like a complete 100% resolution of my CFS, food reactions and emotional problems (axniety, depression) for about 1.5 weeks before it relapsed completely over night.
You can never be sure exactly what the abx are killing though, because I didn't know I had SIBO at that time and it's highly possible that the combo killed my SIBO and it relapsed.
Nothing is ever easy!
I wonder if relapses occur because abx used are bacteriostatic ie doesnt kill bacteria but stops them replicating versus abx that are bacteriacidal which kill bacteria but maybe resistant to these bacteriacidal abx. Someitmes why long term bacteriostatic abx's are used so the infections eventually just dies out.
It is an online contact, but not English. She wrote she had been completely healthy for six months, then she relapsed little bit so took another round and again got better. Very interesting.
I think it does prove that the origin of your symptoms is in your gut...do you agree ? I've had similar experiences - in the beginning a low carb diet resolved all symptoms immediately, later on it did after a week or so, now it does not.
I think it does not prove anything as these drugs are systemic and have broad activity spectrum.
Interesting. Do the above antiparasitics work in a different way to mebendazone? And do they target different organisms? Looks like I've got some research to do.
orion: Mebendazole is an anthelmintic (worms). The more devastating parasitic infections are mostly protozoa.
Lala: My illness tends to 100% revolve around my gut symptoms. I don't believe I have any other infection outside the gut (including viral).
Have you finally managed to kill your blastocystis hominis or not, hixxy?
Blasto no longer shows up on stool testing. So either it's hiding, another parasite is hiding, or it's just persistent SIBO. Whatever causes my digestive problems was nearly killed with that triple combo, you never can be sure what exactly though.
I wanted to report back that since taking the 2nd dose of mebendazole around the middle of July those specific gut problems have not come back so far, i have also been able to eat foods that i couldnt before with no ill effect (apart from last night when i went out to a restaurant for the first time in 2 years and ended up with heart pounding all night so couldnt sleep!) I seem to now be able to tolerate small amounts of wheat and sugar.
I dont know about others experience of having a break from all or most sy,ptoms but from my point of view the drug has only helped my gut and not impacted at all on any other symptom, including brain fog which could be coming from gut issues.
Im still considering the Geneva diagnostics comprehensive stool test with parasitology and would like to know if its worth the money as finances are pretty tight in my house. Anyone had any experience of this test? Also i was thinking of doing it through Dr Myhill who i am a patient of -but it would mean paying a big fee for her interpretation and letter to my GP -is it worth doing it directly with the lab and then working out the results myself?
Hi justy. According to Rich, the Diagnostechs expanded GI panel is a better test . I'm a patient of dr Myhill - over the net- and she has kindly agreed to register with diagnostechs so she can get this test for me. She's just going through that process now. You can send the sample to the USA overnight for about 60 quid - I'm not sure of the price of the test yet but hoping it won't be that much more than the geneva CDSA including cost of postage and hopefully a more useful test too . I figured if I'm going to spend such a lot of money it had better be a good test!
Thanks Harrycat, thats really useful information. Perhaps you could let me know how it goes with Dr Myhill and i could ask her about it too.
Could you provide us with a link to what your online contact wrote. It doesn't matter if it isn't in English because there are several automatic translation tools available online. What I'd like to know is why she decided to try those particular drugs in the first place. And did they cure all her ME symptoms or just the gastrointestinal ones.
Thanks for the link. I've put the text through Google translate and it's more or less readable.
Interesting read. Unfortunately, it appears that Czech doctors are just as shitty as the ones in the UK. Once again, I'm left scratching my head and wondering how they get away with it. No other provider of a product or service could get away with treating its customers so badly and still remain in business. The medical profession needs to be dragged kicking and screaming into the 21 century. The paternalistic patronising crap we have to put up with is totally unacceptable.
Getting back on topic, I've been toying with the idea of trying antiparasitics. However, Valeriano's description of her illness doesn't quite match mine. There is a lot of symptom overlap, including of course extreme fatigue, but she seems to have more gastrointestinal issues than a typical ME sufferer. Also, she seems to have tested positive for a number of infections.
However, I haven't got much to lose, so I might try antiparasitics on a speculative basis anyway.
You can also try a Google Site Search
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