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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. pibee

    Documentary: Undercover in German Lyme Clinics

    Yes ILADS is quackery. Most of 'Lyme' people have autoimmune diseases. Chronic Lyme exists but it's vastly overdiagnosed..thus most don't improve from antibiotics.
  2. pibee

    Documentary: Undercover in German Lyme Clinics

    i did not contrast anyone with KDM, .. if someone kept going to shrink or neurologist who keeps telling them they have conversion disorder, deep trauma, wrong beliefs, for years, only to expect something different, i'd have same comment i dont understand it. it's not like KDM vs the mentioned is...
  3. pibee

    Documentary: Undercover in German Lyme Clinics

    its strange how some people keep going to KDM and other Lyme quacks for decade and then complain they keep diagnosing them with lyme. I guess it's called "free market" haha
  4. pibee

    Anyone think Trump will get CFS after treating his COVID w/ dexamethasone?

    i still need straight 8, perhaps it even a bit reduced, but if i'd sleep just 7,5 hrs my head would hurt whole day.
  5. pibee

    Documentary: Undercover in German Lyme Clinics

    I have a friend who was diagnosed with ALS. Unforutnately in her country it was impossible to start antibiotics for lyme or do proper test , she lost 1+ year, until she managed to travel to doctor who did Westernblot and PCR, she was clear positive on both. Did antibitocis but already very very...
  6. pibee

    Documentary: Undercover in German Lyme Clinics

    3 yrs later update: Unfortunately I hear KDM is again inn his lyme phase where everyoen has it, he is using some his new test Phage PCR and again people who never improved from antibiotics, and in fact never tested positive even on LTT, and even have alternative diagnosis (like my friend has...
  7. pibee

    Abilify- Stanford Clinic Patients

    ugh, you got neuroinflammation from IVIG? What is the explanation for it by you or your doctor? MCAS? how wonderful. Seems IVIG can swing both ways, annoying!
  8. pibee

    Results of the German Cell Trend laboratory for POTS

    no they didnt :) wish something cheap as steroids or antihistamines has so powerful effect, but it doesnt ;) one suggestion was volume expansion but that makes no sense either because for me highly specific more psychiatric or cognitive (dyspraxia) symtpoms were gone immediately which has...
  9. pibee

    Results of the German Cell Trend laboratory for POTS

    i've seen really negative ones, very low numbers around 1, people without autoimmune disease.. so i wouldnt dismiss 2 antibodies fully
  10. pibee

    Results of the German Cell Trend laboratory for POTS

    yes i felt worse during laying, standing, i didnt connect it so much to orth.intolerance because no palpitations, sweats, shaking, lightheadedness,... it was just "Mild" POTS, but overall caused my dysfunction since 2005, because I cant keep up w orthostatic stress of being on my feet 12+ hours...
  11. pibee

    Results of the German Cell Trend laboratory for POTS

    ya M3 jumped from 11 to 26 in 2017 to 2018 for me and in mid 2018 i started to have mild sicca and then in 2019 full blown after hormone+IVIG. In 2018 i received hormoens too so maybe that was advancing problem. IVIG decreased all those antibodies drastically but I still struggle with sicca...
  12. pibee

    Results of the German Cell Trend laboratory for POTS

    There is research where it shows when they filther noradrenaline in blood , many become negative to alpha1. Maybe other adrenergic too. You're actually only one without POTS i've ever heard to test positvie and so high, one of highest results I've heard. Well I believed I don't have POTS...
  13. pibee

    Results of the German Cell Trend laboratory for POTS

    just curious, do you have POTS? are you negative for adrenergic ones? the study by Grubb said nobody tested positive for muscarinic if adrenergic werent positive, so it's interesting if you do. or i guess you dont have POTS edit: lol i see now you wrote adrenergic. interesting, i never heard...
  14. pibee

    Comment by 'pibee' in 'Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 3)'

    very impressive theory, have you been able to discuss this with any of the researcher like Ron Davis?
    • pibee
    • Blog entry comment
  15. pibee

    Comment by 'pibee' in 'Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 4)'

    very interesting. For me personally ME is just smaller part of illness, my POTS and now Sjogren's sicca dominate as problems , and some unspecificed encephalopathy that has ME features but is not only ME, i have broader symptoms seen in encephalitis . It all responds to gut treatments, IVIG...
    • pibee
    • Blog entry comment
  16. pibee

    Comment by 'pibee' in 'Connecting the dots ... Is ME/CFS a complex fungal intolerance? (part 4)'

    interesting but totally uneducated guess - wouldn't more people then see they have intolerance to sugars, junk food? i personally dont notice it so much,...until I ruined my gut with too much antibiotics, then i noticed classical yeast flares and they made ME flares too. But overall i didnt...
    • pibee
    • Blog entry comment
  17. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    Which type? NOH yes, but NOH usually happens later during tilt, not within first 3minutes. NOH also goes w antibodies. While other forms of OH, like IOH, are not neurogenic. Every definitionof POTS i ever read says "increase of 30 in HR in absence of orthostatic hypotension". What am I missing...
  18. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    yes, that's true, ... of course there is not even very unique consensus... (example : some don't include 120 + in definition... ), but within first 3 minutes there shouldn't be significant drop in BP and experienced ANS clinicians recognise NOH as rapid drop in BP, but there are some people who...
  19. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    Prettymuch everyone relevant in Dysautonomia research. I never heard anyone claiming it's not autoimmune, like there is a lot of case w ME Why go against 90% of positives on antibodies? Causing POTS in animals by transfering antibodies to them? Curing it by removing same antibodies in animals...
  20. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    That's what I said actually, without knowing if CCI is even linked to the cause of symptoms, or if surgery is fixing the underlying cause of CCI ,, no point in doing such surgery. And especially if you know you have POTS which is high betting in science community that it's autoimmune. The odds...
  21. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    Any trials he did ? I dont see except case reports. There is too much research to give you just 1, there are at least dozen in last several years. If you're not aware of that, please review the literature again before thinki ts just "some cases" of POTS. example: From what I remember, not...
  22. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    No, POTS is right now defined as +30 average increase without any drop of BP. I can't know this, but I know as mentioend people misdiagnoed w POTS because they have similar condition like increase of HR initially but then it falls back , and on average wasnt +30, they still got diagnosed...
  23. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    Never heard of Rowe, must not be affiliated with Dysautonomia International What I say, or think, it's not relevant, it's relevant that there is strong indication that it's autoimmune and of course there will be another few years before that's accepted. You can easily find more information...
  24. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    well, i think 95% of relevant POTS researchers are all considering there is enormous amount of proofs and indications it's autoimmune. I didn't quote research because it's easily available, I would guess PR members are very good at finding research if they wan't to. But as most studies published...
  25. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    Allow me to remain sceptical. As I mentioned, POTS-like syndromes sometimes misdiagnosed as POTS, you can easily find study recently published that explains this issue. I have a friend who is so fanatically convinced she has POTS, even though she does not have it, but similar syndrome (without...
  26. pibee

    Tracking CCI / AAI MRI & Treatment outcomes

    I am sorry, mate. POTS is autoimmune, in 90% cases, and I guess in 100% if you count in some cardiologist tend to misdiagnose other similar conditions as POTS (i know personally few cases who were diagnosed as POTS and actually dont have it, and not a surprise, they dont have positive...
  27. pibee

    Should I suggest Pots to the GP based on this ?

    I had 179 HR while walking in the city, buying cheese at the food fair, without feeling palpitations....it was more than what was my usual then, triggered by tilt test. So when i was going home after tilt up test I felt my usual fatigue, but not even shaking. I never shake at 170 which I...
  28. pibee

    Chagas disease - ME link?!

    I didnt follow research updates lately so this might be irrelevant, but just curious... from what I remember Ron Davis said that African trypanosomiasis has the same gene expression as ME, would this be complete coincidence that Chagas disease, American trypanosomiasis.., is also linked to...
  29. pibee

    SF neuropathy related fatigue, heat & exercise intolerance in MS

    my neuro has particular interest in autonomic system in MS (and connection to POTS), but as you read in this study MS is considered only CNS disease which might not be true. I was only referring to MR neurography as additional tool, because 50 % (? if i remember correctly) SFN in ME might be...
  30. pibee

    SF neuropathy related fatigue, heat & exercise intolerance in MS

    Interesting & related https://www.ncbi.nlm.nih.gov/pubmed/29023976