• Welcome to Phoenix Rising!

    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

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    @Cort.. Welcome back to the forum. I am a member here since 7 years and was always amazed at the depth of knowledge and unique perspectives of members. I always wanted to thank you for both PR as well as Health rising. I'm really grateful to you for founding this forum. It has helped immensely...
  2. M

    Scientists hail autoimmune disease therapy breakthrough

    Wow, seems to be great option. Thanks for posting.
  3. M

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

    There are many threads here on PR about jawbone cavitation. Please go through it. I suspect I have chronic infection in jaw too as I had dry socket after wisdom teeth extraction and it is still painful even after 4 years. It was really a nightmare.( It damaged my TMJ and now have symptoms in...
  4. M

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

    Did you rule out a chronic infection in the jaw bone as your wisdom teeth were extracted and you had infection ?
  5. M

    How many have antiphospholipid antibodies?

    @Gingergrrl ..hi , didn't log in forum for a few days. So couldn't reply earlier. My rheumatologist wasn't sure what does only IgM positive antibody mean. He thought it is better to take baby aspirin daily. But Dr Goodman(Arizona, Mayo) had mentioned in vimeos that APS antibodies...
  6. M

    How many have antiphospholipid antibodies?

    Hi , I'm in India and my rheumatologist ordered APS panel consisting of anti beta 2 glycoprotein , Lupus anticoagulant and anti- cardiolipin antibodies. I guess there are other auto-antibodies too in APS but these three are more routinely tested here. My beta 2 glycoprotein antibodies...
  7. M

    How many have antiphospholipid antibodies?

    @ChookityPop ..to be honest , I didn't take aspirin regularly. I'm worried if it may cause bleeding and didn't want to add another medicine. But finally after Covid in March, I started taking it as my d dimer was raised. I'm now suffering from long covid. I already had chronic...
  8. M

    How many have antiphospholipid antibodies?

    I was tested for three antibodies of APS panel and I'm consistently positive for anti beta 2 glycoprotein antibody (IgM only) thrice now. I have Sjogrens syndrome (SSA positive) and severe POTS. Re APS, my doctors said it is commonly associated with Sjogren's. I do get livedo...
  9. M

    Traditional Chinese Medicine (TCM) Diagnosis

    Can you please recommend some books ?
  10. M

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

    Very interesting.. I also suspect adrenal exhaustion due to constant stress and repeated infection. Though I'm diagnosed with Sjogrens and POTS, I think adrenals are important as whole picture. Please share supplements which helped you. I'm very sensitive to everything but still would love to try.
  11. M

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

    Fludrocortisone was prescribed by my cardiologist for POTS. I had my rate go to almost 160 just on standing. And I used to get dizzy, spaced out and shaky if I don't eat often. Fludrocortisone along with beta blocker is helping somewhat. I have to take 5 - 6 gms salt and 2 - 3 litres of water...
  12. M

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

    @Replenished Did you try fludrocortisone? I have this similar problem, I can't retain water in body. This is due to hypovolemia. It is really worse in morning. If I eat something salty and take water along with it, I feel better. Otherwise I'm on the verge of collapse. Fludrocortisone has...
  13. M

    Coronavirus Vaccine(s)

    I have antiphospholipid antibodies. So, this is an additional risk factor. I have Sjogrens and severe MCAS with chronic urticaria and angioedema. I had a very severe reaction to tetanus vaccine in childhood. My doctor immediately injected me with pheneramine. Otherwise it was a total...
  14. M

    Coronavirus Vaccine(s)

    Today, I saw an interesting video in which a cardiologist was explaining about the thrombotic events associated with Astra - zeneca vaccine. He said that the virus itself induces clotting problems which was observed in many patients. As the vaccine contains CoV-2 virus protein , it mimics the...
  15. M

    In Memory of Patrick Johnson "PatJ"

    Very sad.. he was a really empathic and very supportive person. He helped me in crucial times . May his soul rest in peace..
  16. M

    dr myhill, the brain effect, which type are you??

    @heapsreal.. Old thread but I find it very interesting. I think I was always GABA predominant . it matches my personality and predicted profession too. My symptoms started over a long time period. That has certainly originated with GABA deficiency. Epilepsy and anxiety were main problems...
  17. M

    Article The Apologizers of the ME/CFS World

    This is exactly me ..I tried to repress my anger and resentment for so many years.I tend to avoid conflict as far as possible.But then I become resentful. Had no childhood trauma but a concussion and abusive husband were the big stressors. Now I have Sjogrens and bunch of other autoimmune...
  18. M

    Why do we feel better at night?

    In my case , it is low blood volume and tachycardia in the morning. With salt and water loading and atenolol, I start feeling better in afternoon.
  19. M

    MCAS: What meds helped you most?

    I It is said that second generation antihistamine like cetirizine are less drying. Fexofenadine is said to be least drying in this regard.
  20. M

    POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

    @Learner1 thanks for your input. Yes, I was also scared at the possibility of jaw bone infection. But oral surgeons and otolaryngologists ruled it out(hopefully) with CBCT and CT scan. May be cavitation but don't have any reliable holistic dentist here. I have Sjogrens and APS, so may be...
  21. M

    POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

    Which antibiotics may be safer regarding oxalate? I need to take frequent antibiotics for a lichenoid rash/ infection in oral cavity since 2 years after wisdom teeth extraction. So far no one has been able to pinpoint the causative microbe. But need to take antibiotics (alternating amoxicillin...
  22. M

    Less sleep -feel better! Decent sleep -feel dodgy! What is going on?

    I had experienced same thing in first 2-3 years of illness. If I slept badly, I used to feel much normal, had better balance and less POTS symptoms and most importantly much clearer head. I used to wonder if insomnia causes rise in catecholamine level as @Hufsamor has speculated. As now...
  23. M

    Anesthesia for heart issue(palpitation, tachycardia, pots, etc)

    @kisekishiawase.. Did electrophysiologist diagnosed you with inappropriate sinus tachycardia ? Some of them may not call it POTS but if you have tachycardia at rest also , they may prescribe ivabradine. At least they offer it here in India. But unfortunately I couldn't tolerate it but it is a...
  24. M

    Autoantibodies and ANAs

    @Belgiangirl.. APS is also known to cause memory problems. I'm not well right now so can't elaborate. Pl look into it.
  25. M

    If we have low blood volume where does it go?

    Sorry , I was not clear about my diastolic hypertension. When I had narrowing of pulse pressure along with slight increase in diastolic pressure, fludrocortisone with lots of salt and water helped my OI. My electrophysiologist insisted on volume boosting and it helped to decrease my diastolic BP...
  26. M

    If we have low blood volume where does it go?

    @HTester .. Very glad that you have revived this old thread. Low blood volume and its effects on cardiovascular system is very interesting. When I first found out about David Bell's theory about five types of orthostatic intolerance, I was really amazed. It made sense why I feel so unwell...
  27. M

    Autoantibodies and ANAs

    @Gingergrrl.. I'm in India. Thanks a lot for names of these fb groups. It never occurred to me that there are groups devoted to IVIG though I'm member of several other groups for my diagnoses. But without a doctor who can understand my all co-morbidities, this seems to be quite risky...
  28. M

    Autoantibodies and ANAs

    Thanks for your prompt response !! I'm on a hunt for a doctor who knows POTS and willing to try SCIG. No rheumatologist wants to prescribe IVIG or SCIG here although they think it might help. Facebook group will be very helpful as I have too many questions that might have been...
  29. M

    Autoantibodies and ANAs

    Not yet.. I'm looking for a reliable laboratory here. No doctor has ever mentioned it but I guess it may be worth testing.
  30. M

    Autoantibodies and ANAs

    @Gingergrrl ..yes we too think imuran is too dangerous considering that I'm already very much prone to infections. Wondering if I'm immunodeficient too. IVIG is worth trying but I still don't have any doctor who will monitor me with IVIG . I'm scared due to my MCA and one APS antibody. I so wish...