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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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Search results

  1. T

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    @godlovesatrier unfortunately you appear to be experiencing a similar situation to the warning I posted earlier and informed Ken about 7 years ago when I took the spore-forming formula. It was a nightmare and put me in bed for a fortnight with the symptoms you are describing. I would also...
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    Evidence the cause of ME/CFS is in the kidneys: my experiments targeting my kidneys with bacterial biofilm-destroying ultrasound

    I have a rescheduled CT scan in a couple of weeks for my kidney cysts. Some alternative herbalists suggest they may be a result of parasite activity and cysts seem to show up in people with later stage Lyme. Perhaps there might be something in the initial Marcov theory...
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    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    They put me in bed for a week - I keep thinking if something can make me feel so bad probiotic-wise then perhaps there is one that can make me feel really good - sadly I am yet to discover it!
  4. T

    Evidence the cause of ME/CFS is in the kidneys: my experiments targeting my kidneys with bacterial biofilm-destroying ultrasound

    Has anyone else got cysts on their kidneys? I had an MRI for lower back pain and large simple cysts were discovered - particularly on my right kidney. I am still awaiting a CT scan. I have all the usual frequent urination etc problems and severe M.E.
  5. T

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I contacted Ken at CFS remission 6 years ago after trialling bacillus probiotics - it now appears the reaction is common - they made me feel absolutely terrible - see here, many release histamine. https://cfsremission.com/2016/11/21/just-thrive-probiotics-update/
  6. T

    Has anyone been diagnosed with Primary Polydipsia (compulsive water drinking)?

    I have the same symptom with drinking/peeing - 14 times the other night, but there is no way I can add electrolytes as they immediately trigger a flare of stomach/bowel pain that lasts for days. Interestingly my latest MRI showed a large number of simple cysts on my kidneys which I am getting...
  7. T

    TMJ (temporomandibular joint disorder) causing CFS, or is it the other way around ?

    TMJ pain was my first main symptom before slipping into severe/very severe M.E. I can't remember the number of dentist visits I have made convinced that my teeth were rotten only for it to be diagnosed as TMJ issues. I have tried various bite guards and exercises and am currently in the...
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    High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

    I've no idea - I've been diagnosed with severe M.E for over 25 years, totally housebound and the usual smorgasbord of symptoms and pain daily so I am acutely aware of any changes - personally I am not inclined to push through these reactions any longer.
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    High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

    I thought I would try adding a little manganese to my daily limited supplements. Within 6 hours after 14mg I was feeling a deep flu-like ache and general cold-like symptoms. Backed off for a few days and then tried a 8mg dose - again within hours body-wide aches and the same sensation of immune...
  10. T

    I cannot deal with this anymore - Dry, depleted, dehydrated, weak, lifeless

    Yes I was tested but it is not something I could handle now as my M.E is severe/very severe. I am sorry not to be offer any help and as you mentioned that you had not received an M.E/CFS diagnosis (I received my severe diagnosis from St James Leeds Immunology Dept) I would encourage you to...
  11. T

    I cannot deal with this anymore - Dry, depleted, dehydrated, weak, lifeless

    I have exactly the same issues and it was the first symptom I got investigated by the NHS nearly 20 years ago. I tried desmopressin which just made me feel "wrong". I need to go to the toilet an average of 10 times a night - full bladder, clear urine just as you say. Sometimes only 10 minutes...
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    Medical PTSD: how many have you had?

    @BrightCandle I echo all your above. It would take far too much energy to recount the agony, humiliation and neglect that our sainted NHS has meted out on me over the past 20 years. Thank you for sharing. My partner who suffers with mental health issues has accompanied me to every one of my...
  13. T

    Link between craniocervical instability (CCI) and Dr Markov's bacterial dysbiosis theory of ME/CFS?

    It's an interesting idea as one of many people's (including mine) first symptoms is a problem in the TMJ area, which is very close to the location you mention.
  14. T

    The NICE Round Table Meeting to be postponed to October with the Royal Colleges' Prof Dame Carol Black as Chair

    Many of us have been sick for decades and it is shameful that we are "celebrating" the medical establishment deigning to stop harming us further. There seems to be severe cognitive dissonance between the firmly entrenched beliefs of doctors and the reality that patients are presenting before...
  15. T

    Glutathione - everything I've tried recently has just gotten better and better.

    That's great news. I have been taking Vivomixx which is the original VSL3. I find it helps when I get a flare of stomach pain but not for much else. I am taking it when required. Again it has strains that I have had problems with before that have caused histamine issues. It really is a complex...
  16. T

    Glutathione - everything I've tried recently has just gotten better and better.

    @godlovesatrier I find it interesting that you have improvement with the Solaray product as it contains strains that many may have issue with. The reason I mention this is that it was one of the probiotics that a women who Cort Johnson blogged on 5 years ago said she was taking. How long have...
  17. T

    Glutathione - everything I've tried recently has just gotten better and better.

    @godlovesatrier thanks!
  18. T

    Glutathione - everything I've tried recently has just gotten better and better.

    @godlovesatrier sorry not the Glutathione - where did you buy the probiotics? They are supposed to be kept refrigerated before dispatch. Thanks
  19. T

    Glutathione - everything I've tried recently has just gotten better and better.

    @godlovesatrier thanks for the information - could I just also ask where you sourced it in the UK as I note that is it meant to be stored in a temperature controlled environment?
  20. T

    Glutathione - everything I've tried recently has just gotten better and better.

    @godlovesatrier Can I please ask which version of the Solaray probiotic you are having success with - is it the specialist male version? thanks
  21. T

    Blind spots as a warning sign for overexertion?

    Yes I have exactly the same thing and have had migraine with aura since a child. They always get worse when I am very ill and before a migraine. Last year I had acute uveitis and the pain has still not resolved 14 months later. I have had comprehensive eye examinations at the specialist unit and...
  22. T

    CBD oil for neuropathic pain

    I've just finished a pot from a company called Herbactive in the UK. Cost about £40, I had high hopes as my legs and feet have been terrible recently. The owner is an experienced herbalist and is happy to answer questions via email. https://www.herbactive.co.uk/ Unfortunately I cannot say it...
  23. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Longecity have extensive, indepth threads dedicated to reishi and other mushrooms that are well worth searching for. All questions raised here are largely answered there.
  24. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    @godlovesatrier I have read that the oil is milder than powder - I just didn't expect it to taste hardly different from olive oil...
  25. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    @joshua.leisk I understand what you are saying, but whenever I try any of these protocols I get severe uveitis which has sent me to the emergency eye department 4 times in the last 8 months - this is a sight threatening condition, requires a heavy dose of harmful steroids to resolve and has left...
  26. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    @godlovesatrier I have been having recurring uveitis for a year now so am unable to take the mushroom products. I just can't get the pain and neuropathy under control so am very reluctant to provoke more immune activity. However I am very interested in your self-experimenting.
  27. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    I always get headaches, top of spine pain and eye pain/uveitis when I take reishi/lions mane. I know I mentioned this much earlier but I have found the blog by the German researcher a few years ago that maybe of interest: http://meversuscfs.blogspot.com/...
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    NEUROPATHIC CORNEAL PAIN: APPROACHES FOR MANAGEMENT 2017

    I completely agree and sympathise with you. I have been in constant pain since having a flare of acute uveitis over a year ago. I have had multiple hospital visits and the last rheumatologist I consulted suggested it could be fixed by swimming three times a week and over GET- this despite the...
  29. T

    And then there was one- anyone else in US still not vaccinated?

    This maybe of interestL https://off-guardian.org/2021/05/14/a-primer-for-the-propagandized-fear-is-the-mind-killer/
  30. T

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Asparagus smelling urine is a common, harmless result of taking alpha lipoic acid.