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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. M

    Has anyone seen improvement on Clostridium Butyricum ?

    Thanks for the info in the link, lots of interesting info there to sift through over time. Did you get to read the other thread on Clostridium Butryicum? the one that is 60+ pages!. Wondered if anyone had read it all and knows whether it works or harms pros and cons etc.I cannot read very...
  2. M

    Terrible Wikipedia article on MECFS! (CBT, etc)

    I am so glad this thread started and gabriella I am with you. I don't care if there are other watchers who keep changing it, we as a team are more motivated and stronger than anyone else out there will ever be, if we don't give up, then sooner or later they will, we will always win in the...
  3. M

    Has anyone seen improvement on Clostridium Butyricum ?

    Hello, I have started c butrycum about a month ago at 2 tablets a day then increased to 3/day but having problems. Had anyone managed to read the other thread of 63 pages!!! - Is Clostridum Butrium a game changer one. Because I cannot read that much, I am too severe to do that, have read first...
  4. M

    Strange symptoms (NAC)

    The elispot test is supposedly the best test for cpn, but I am no expert, so do plenty of reserach before thinking of diving in I would.
  5. M

    Strange symptoms (NAC)

    Hi, yeah could be "NAC FLU" or Porhyria caused by the NAC you took affecting any existing C.pnuemonaie infection. look on cpnhelp.org and search nac flu and porhyria. Personally I get the above symtoms you describe when I kill off too man cpn at once, which for me is porphryia symptoms. Also...
  6. M

    Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

    Sorry can someone please help me out here and expain how I reply to a quote on this thread( I am confused and can't find out on here how you do it, never have figured it out, sorry! Like I want to highlight something AB has said (which goes yellow) and then post my reply(in white). How do...
  7. M

    Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

  8. M

    Is it possible heavy metals from titanium and nickel braces could contribute to CFS/ME?

    Don't they use heavy metals in vaccinations such as mercury in order to create an immune system reaction? This link from Dr Myhill talks about interactions between heavy metals and the immune system. see under immune adjuvants...
  9. M

    What are some natural supplements for POTS?

    No I've never had those symptoms before or during nimodipine. but if you do decide to try it, start low and go slow, as soon as you get a headache it's too high. alot of people with ME need a smaller dose than the usual general public dose but then again some with ME take the full dose no...
  10. M

    What are some natural supplements for POTS?

    nimodipine works the best for me for POTS. I've tried midodrine, butchers's broom, propranolol with caffeine combo, they all work a tiny bit but no where near as well as the nimodipine, for me anyway. Note you need to take really small doses with ME even smaller if severe. I only take 1/8 of...
  11. M

    Brain inflammation?

    A chronic low grade viral encephalitis? particularly herpes family related but can be bacterial. Anyway, I would get tested at Arminlabs and think about trialing anti virals and see if the symptoms decrease, OR anoither angle might be to try somethng like longvida curcumin to see if...
  12. M

    MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

    Jonathan edwards said: "The people who agree unanimously on the reliability of evidence do not often get things wrong. Recommendations tend to get changed by bodies like NICE who have huge vested interests in saving cash and routinely get things wrong. Updating recommendations also tends to...
  13. M

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    Pam, are you still takng the 5mg prednisone and armour thyroid daily? Tim
  14. M

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    I wouldn't reccomend taking steroids long term to help manage ME symptoms based on my experience. I did start taking them 10 years ago about 35-40mg approx hydrocortisone/day. My ME was really bad(I am severe) and I did an ASI test and it showed practically non existent cortisol levels so I...
  15. M

    Sleep reversal advice

    Melatonin helps with sleep a little for me sometimes, but doesn't help setting sleep rythm in me, but methyl b12 a start of your day does seem to help me get back into the sleep rythm I want, because if you take say 1mg methyl b12 at start of day then at end of day you feel sleepy and are able...
  16. M

    Sleep reversal advice

  17. M

    Do we think CFS affects the heart or not ?

    Here is a link that summarises heart problems in ME/CFS in one page http://findacureclub.weebly.com/heart-problems-in-me.html
  18. M

    Anyone know where to get IMIG online or in UK?

    I agree with that last paragraph
  19. M

    Anyone know where to get IMIG online or in UK?

    If you click on this link from the John Richardson Research Centre advice for doctors where the talk about IG treatment(if the link does not work as it was problematic pasting it in then just google it and you should find it easily) http://m.hfme.org/site/mobile?dm_path=%2Fwrichardson and...
  20. M

    Anyone know where to get IMIG online or in UK?

    Great video of Dr Nigel Speight that you posted. With Dr Speight being a pediatrician, I take it that these 4 out of the 6 ME/CFS patients who made a full recovery after getting IVIG / IMIG were all children. I wonder if children are more likely to achieve full recovery from these...
  21. M

    Anyone know where to get IMIG online or in UK?

    No I don't have a doctor to prescribe the gamma, and that is my problem
  22. M

    Anyone know where to get IMIG online or in UK?

    Thanks for the advice susank. Hip lots to look into there, you must have put quite a lot of time into researching that on my behalf so I am very brateful thanks. The fertility angle, I would not have thought about that, interesting. 1st step I will try and price it all up and see if feasable...
  23. M

    Anyone know where to get IMIG online or in UK?

    Thanks for your reply daffodil. I think 5ml shots work out at half a gram. As to whether following up rituximab with immunoglobulin or it is the immunoglobulin itself that produces a who knows but there is a link via Cort's treatment resource page that suggest that long term use of by...
  24. M

    Anyone know where to get IMIG online or in UK?

    Thanks for your reply daffodil. I think 5ml shots work out at half a gram. As to whether following up rituximab with immunoglobulin or it is the immunoglobulin itself that produces a who knows but there is a link via Cort's treatment resource page that suggest that long term use of by...
  25. M

    Anyone know where to get IMIG online or in UK?

    Hello everyone, Thank you for your replies! I didn't mean to create such an intense debate, but I suppose it is a good thing. I haven't been able to read all comments yet but I hope to do so and write my reply and viewpoint in about a week's time. In the meanwhile thank you all for your time...
  26. M

    Anyone know where to get IMIG online or in UK?

    Hi everyone, (this is my first post) I am tyying to find out where I can get the intramuscular immunoglobulin shots organised. I would like to do 1 or even half a gram weekly. I live ih the UK, can't seem to figure out where to get here. Ideally I would buy online and sort it all out myself...