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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. 5ummer

    CDSA RESULTS

    There is a lab that makes us an e.coli culture specifically for my doctor.
  2. 5ummer

    Fantastic doctor in Cape Town

    I paid R2 000 for both of my tests, my consultation, and about a years supply of frozen e.Coli (I go and pick it up every 6 months). Prof Bouic won't prescribe you e.Coli without a test to show your gut ecology is lack it.
  3. 5ummer

    Fantastic doctor in Cape Town

    I have been sick since 2010 and I was completely bedridden for the first 3 years. Over the last year I've made significant improvement to the point that I am able to leave my house for a short time almost every day. I believe this is largely due to a treatment I started last November when I was...
  4. 5ummer

    Pls share yr gut successes

    The lab my doctor works with makes it. This place: http://www.synexagroup.com/. It is based in Cape Town.
  5. 5ummer

    Exercise a major cause of CFS symptoms for me

    I too think strenuous exercise is a terrible idea for people with ME. I do very very light exercise. All of it is done lying on my back and it is not meant to be tiring at all. I do things like pass a ball from hand to hand. I do 8 reps of each exercise and only do 6 exercises. This is followed...
  6. 5ummer

    Trying to decipher my GI symptoms

    I am incredibly lucky to have found a doctor who seems to be a bit ahead of the current M.E. research and has already done research into gut ecology. Good luck with your quest for personal income!
  7. 5ummer

    Trying to decipher my GI symptoms

    I was having huge troubles digesting food and my doctor sent off a stool sample to a lab to check my gut ecology. Turns out I didn't have the right bacteria to aid digestion and some other bacteria that was was stopping absorption. One of the big things missing from my gut ecology was E. Coli...
  8. 5ummer

    Pls share yr gut successes

    My doctor sent me for a diagnostic test at a specialist lab that used a stool sample to check my gut bacteria. I was put on a gluten-free, low sugar diet, probiotics and E.Coli. A year later and I hardly ever have any stomach problems. The freedom from the constant pain and upset stomach has...
  9. 5ummer

    Deconditioning Theory IS DUMB!

    I don't think deconditioning causes our illness but I do think it can make life more difficult for us. After being bedridden for a several months things started to get harder and harder for me. If I tried to sit up for more than 20 min I was in pain all over. Since started doing very very light...
  10. 5ummer

    Exercise a major cause of CFS symptoms for me

    I do regular light exercise with a physio for the past 3 years and it has overall helped to keep my healthy. I agree that is easy to feel when I have over done it and I know where my limit is. For 18 months I did this exercise 3 times a week believing it was helping me. However at the beginning...
  11. 5ummer

    If you were in remission, what tests would you run?

    Hi Penny I am currently debating if falling pregnant is a good idea being as sick as I am. In my reading I saw some speculation about why some woman with ME improve while pregnant. One theory that I found interesting (but I can't find the original source for, sorry) speculated that pregnancy...