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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. athomeinRwanda

    Any Change on Plaquenil (Hydroxychloroquine)?

    Hi, I'm sick since 2006; diagnosed with Lyme in Oct 2013; began taking 200mg/day of Plaquenil in Dec 2013. Felt significantly better on it. Began Azithromycin a couple of months later, but it made me so unwell I was unwilling to tolerate it (unable to function at work) and stopped, but continued...
  2. athomeinRwanda

    It's all in the Gut. Why we get ME/CFS

    Sure - fine with me. I won't be contributing to the discussion much. Just too busy. Sorry. Will give details to specific questions when I can.
  3. athomeinRwanda

    It's all in the Gut. Why we get ME/CFS

    Hi, I'm a patient of Dr Lewis' in Melbourne. For me it has definitely been a gut problem - I was diagnosed with fructose intolerance which I've clearly had my whole life without knowing (had various tests when I was young, but they hadn't a clue back then, i.e. in the 70's). I was sick and...
  4. athomeinRwanda

    Comment by 'athomeinRwanda' in 'Question on recovery'

    Hi Rosa, I don't know what you're eating, but I was diagnosed with fructose intolerance (found in approx. 80% of people with ME here in Melbourne) and following that I kept to a very strict diet for 3 months (and only slightly less strict after that). The only foods I ate were: chicken, lamb...
  5. athomeinRwanda

    How do we know that everyone doesn't have sibo and leaky gut?

    Hi uk, Yes - bloating, gas (I mean, everyone gets gas, don't they?!), acid-reflux - but my symptoms were variable and inconsistent, and could sometimes disappear for months. Many ME symptoms are similar to those of coeliac disease, without detailed testing I'm not sure that they can be easily...
  6. athomeinRwanda

    How do we know that everyone doesn't have sibo and leaky gut?

    Hi Rusty, Good question! I put together the diet myself, based on my test results and various sources of information. I read widely. I tested positive for fructose malabsorption. Information on a fructose-free diet came from the www.shepherdworks.com.au website (see FODMAP diet), and a...
  7. athomeinRwanda

    (SCD) Specific Carbohydrate Diet anyone?

    I've put together my own strict diet, cutting out everything except: chicken, beef, eggs, specific non-fructose vegetables, olive oil, salt, quinoa, pumpkin seeds, sunflower seeds, sesame seeds, chia seeds, decaff tea and rice milk. I'm doing very well so far - have written more about it here...
  8. athomeinRwanda

    Celiac Disease?! Say it ain't so...

    Just a quick note to say that I'm continuing to feel better on my strict diet and have written about it here: http://nickyreiss.blogspot.com/2011/04/more-notes-on-healing-ive-now-been-on.html I will have the results of CD genetic testing in about 3 weeks.
  9. athomeinRwanda

    How do we know that everyone doesn't have sibo and leaky gut?

    I spent a couple of years believing that I didn't have any stomach issues when I developed ME - after testing, I now realize I was most likely mistaken. I'd just become so used to my symptoms over many years that I took them for granted. I've written about my recent success with a strict leaky...
  10. athomeinRwanda

    Grassroots Campaigning Organisation

    The situation in the UK for ME patients is dire. I hope many people will help get involved in Action Now - involvement helps you feel better too!
  11. athomeinRwanda

    Celiac Disease?! Say it ain't so...

    Hi, I'm diagnosed with ME/CFS (CCC). I've tested positive for fructose malabsorption, negative on IgG testing. I did the coeliac serology test and it was negative. However my sister was positive for coeliac using genetic testing (she has Hashimoto's). I now intend to test again for coeliac...
  12. athomeinRwanda

    Article: Food Allergies - A Missing Piece? Strategies to Combat Food Allergies

    I consider it essential that anyone with ME gets tested for lactose and fructose malabsorption using the hydrogen breath test. I've tried various elimination diets over the past few years with no useful results - but I tested highly positive for fructose malabsorption, something I would never...
  13. athomeinRwanda

    dr lewis in melbourne

    Re: my second visit at the "CFS Discovery" clinic For anyone who's interested in the "CFS Discovery" clinic in Donvale, Melbourne: On my first visit to the clinic I met with the nurse who gave me the results of the just completed H2S (hydrogen sulphide) test, which showed that I have a...
  14. athomeinRwanda

    dr lewis in melbourne

    Thanks to Zuriel for the warning about Dr Lewis' recommended dietician - I had been on the verge of making an appointment. However I looked at all the dietician's listed with Shepherd Works - none specializes in ME/CFS nor appears to know about leaky gut. This is disappointing. I was hoping to...
  15. athomeinRwanda

    dr lewis in melbourne

    Thank you Tony. I looked up your previous posts and checked out the links and have downloaded some info to read. Cheers.
  16. athomeinRwanda

    dr lewis in melbourne

    Hi GG, You are absolutely right - sorry for my inaccurate reporting. I have had the malabsorption tests done. I have negative lactose malabsorption, but have big fructose malabsorption problems. More tests yet to come. Nicky
  17. athomeinRwanda

    dr lewis in melbourne

    I have just been taken on as a new patient at Dr Lewis' clinic, and will be seeing one of the new doctors. So far I've just seen the nurse for the first appointment. I've just had the required lactose intolerance and fructose intolerance tests done - it had never seriously occurred to me that I...
  18. athomeinRwanda

    UK/US/Canada/Australia ME and/or CFS Campaign Discussion Question

    Open for discussion: The CDC, the NHS, the MRC and other government bodies are running rings around us so long as they continue to manipulate the definition of ME and/or CFS. We need a campaign to require them to accept the Canadian Consensus Criteria...
  19. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Thank you Tony, Ggingues and Francelle; Tony - I've followed your posts about Dr KdM's treatment with interest. I'm still going to see if I can eventually get an appointment with him. Interesting that Dr Hanner (I mis-wrote his name earlier) is listed as not treating "CFS". After my initial...
  20. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Hi Glynis, Thank you for this information. This area of research is new to me. One of the most frustrating aspects of trying to find useful information is the failure of just about the entire research and medical community to properly distinguish between ME and "CFS" when selecting their...
  21. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Good to know - thanks!
  22. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Hi Heapsreal, I'm not well enough for trips up to Brisbane, but I'll hold on to the name just in case. When you say he prescribes "antivirals" do you mean he's prescribing antiretrovirals, as in the same drugs used to treat AIDS? Along the lines of what Dr Deckoff-Jones is doing...
  23. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Hi knackers, Thanks for that name - I'll look him up. Apparently Dr Hannah also focuses on diet. Would love to hear from anyone who's seen him. Nicky
  24. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    Hi Victoria, Thank you very much indeed for all this good advice. I'll begin looking into private health insurance asap. I have already signed up for medicare (thanks!). Yes - the cost of everything here really is a shock! Nicky
  25. athomeinRwanda

    Looking for doctor in Melbourne, Australia

    I've very recently moved to Brighton, VIC from Europe and have begun looking around for a decent doctor. Donald Lewis is so busy his office isn't even making appointments. I've been told that two doctors close to where I live take an approach similar to Dr Kenny de Meirlier - they are Dr. Braham...
  26. athomeinRwanda

    Comment by 'athomeinRwanda' in 'Petition for Panorama Investigation, all signatures welcome!!'

    Hi TGOP the bit that you quoted is an error - the full text in the pdf version reads: "The Wessely School6 psychiatrists claim that ME does not exist7, that patients are in fact suffering from “chronic fatigue syndrome” a somatoform disorder (i.e. psychiatric). They insist that doctors should...