• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    Thank you for the responses. I've been too sick to sign on here.
  2. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    Thanks for the information. Though I'm very sorry you had to go through that!
  3. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    Thanks everyone for the responses for some reason I didn't get an email so didn't know I'd received them. Thank you for guiding me on what doctor to search for I have looked up neuro immunologists but they always say MS but you're right about digging deeper. I've seen four neurologists and I've...
  4. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    Thank you so much for the link and info and response. My new oncologist said it could be an infection but said "they're hard to find"........ Great 👍 but can someone try? The medication I was on was far more serious than Prednisone and it's meant to be long term to control certain levels that...
  5. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    Well there are several people in my family with CVIDS / hypogammaglobulinemia and they have put in my chart "weak immune system" or "compromised immune system" because before this medication I get infections all the time. I've been dealing with a sinus infection the past 4 months. I'm worried...
  6. C

    Extremely ill after 3 months cancer treatment. Bedbound again.

    So I've had an ME diagnosis for at least 15 years. I became full blown chronically ill when I was only a teenager and I can't pinpoint anything that caused this, over the years I just got worse and worse. I ended up bedbound in my early 20's and spent most of my 20's resting, pacing, sleeping...
  7. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Have to retract my statements about NYU, have not been dropped. I am just unbelievably stressed and frustrated and the distance from them makes it harder. @Aerose91 can you send me a PM? Also, when taking an antibiotic how do you prevent things like yeast infections and c-diff? Seems to...
  8. C

    The Fable known as The PACE Trial

    Thanks for including me Graham, you've done a wonderful job here. Great job Leela, you sounded awesome! My friend listened to it and said, "everyone sounds so tired" - ironically funny.
  9. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Well so far we've figured out you can't go to the following for help with encephalitis: Mayo, Yale, Shands, NYU, and John Hopkins............ Nobody locally has any clue what to do. Also, do you think the inflammation and / or autoimmunity to the brain is causing the neuro-psychiatric symptoms...
  10. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Yea it sounds like we are the same age and have the same things going on and the same stories. I was diagnosed with a sub-acute variation of autoimmune encephalitis, then dropped by my doctors at NYU. With that diagnosis insurance still won't approve treatment. So I'm left with nothing and...
  11. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Thanks. They are actually finishing trials with a nasal spray cousin-kin-drug to ketamine as we speak, for MDD. My doctor said we'll most certainly try it when it comes out. I would do anything for relief at this point and the cousin-drug (name escapes me) doesn't have the side effects....... I...
  12. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Yep and I consulted with her neurologist but eventually got moved to someone else. Dr. N is the one who diagnosed me with neuro-inflammation. However, I think they're all too busy to help me and I live way too far away. I will say that I don't recall rituximab ever being mentioned by her or...
  13. C

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Last year I saw a neurologist at NYU, well 2 to be exact. We did a PET scan and found decreased metabolism through-out my brain, the radiologist was so alarmed she paged him and said, "I've never seen anything like this in a 20 - something female, this is what'd I'd expect to see in an elderly...
  14. C

    Does Dr. Rey prescribe LDN?

    I'm just offering my experience and I believe it is what I should do. I was only given very hopeful experiences. I have had several friends go down there and we were all offered the same 3 things except one of my friends was given an antiviral for mono and like I said, her titers got worse and...
  15. C

    U.S. docotors that you reccomend besides Dr.Klimas and Dr. Rey?

    That may be a blessing in disguise. My friend and I had horrible HORRIBLE experiences with the doctors in Miami. Have heard rather bad things about peterson from friends who live in tahoe. If you look up his reviews on ratemds - not good. Dr. Lapp couldn't help me but seems nice. One...
  16. C

    Does Dr. Rey prescribe LDN?

    Nothing to be curious about. All she prescribes is: equilibrant (buy online), immunovir (just buy inosine), and LDN (any M.D. can prescribe this really). That's it. I had violent reactions to all of those at tiny doses and wasn't offered anything else. I was constantly told that they...
  17. C

    Question for Klimas / Rey Patients

    Also, is it a big hassle for you to go? I mean monetarily and distance wise especially being sick? It was a huge hassle for me to get down there. Perhaps if you decide to "see" her you should just do phone consult. She takes a lot more time with the phone stuff and I found it much more...
  18. C

    Question for Klimas / Rey Patients

    Good question. I have seen Dr. Rey a couple of time. I kept bringing up weird symptoms and she would look at me perplexed. I was also diagnosed with an auto-immune disease called - PANDAS syndrome. I emailed her telling her but she didn't say anything. So I don't know whether or not to just...
  19. C

    18 years old, NYC, CFS all life, in need of suggestions

    I also have very very terrible sleeping problems and fatigue. Terrible PEM. That's what makes this whole thing so bizarre and I've had two reputable CFS docs say they've never seen something quite like this, so complex and bizarre.
  20. C

    18 years old, NYC, CFS all life, in need of suggestions

    Yea I have some of what you are describing. I hope we can both get help. I know how tormenting this is and I've been through some terrible sh** - this really takes the cake! Certain words and thoughts and numbers will trigger tics for me and people will look at me if I'm out somewhere b/c I have...
  21. C

    I'm new here & have mono-will i get CFS??

    Totally stress related. Most patients I meet say they were very very stressed, not sleeping, not eating, etc.
  22. C

    I'm new here & have mono-will i get CFS??

    A lot of people get very sick from mono but eventually recover and don't get CFS. But I'm not very knowledgeable. All I know is the lead singer from "bon iver" got mono and was bedridden for 6 months, in that time he wrote all the songs for their hit albums. He then was able to get out of bed...
  23. C

    18 years old, NYC, CFS all life, in need of suggestions

    Dmitri - I was diagnosed with late-onset PANDAS syndrome - which is an auto-immune disorder that causes OCD. I'm only in phase 1 of treatment - valtrex for positive and active coxsackie A and B. Perhaps it's something to read up on, the only good information comes from Dr. Goodman in Beverly...
  24. C

    Mady Hornig: How do you solve a problem like CFS?

    It can happen in teenagers and young adults also (the pandas or pans).
  25. C

    Mady Hornig: How do you solve a problem like CFS?

    It can happen in teenagers and young adults also (the pandas or pans).
  26. C

    Severe OCD

    I was diagnosed with late onset PANDAS syndrome. Based on extensive evaluation of my history and lots of labs. It is obvious with my symptoms this probably was triggered when I was 15 or so by strep and possibly other viruses (that I am now positive for - coxsackie in particular). It can happen...
  27. C

    Anything like florinef?

    Great info guys. I am saving it onto my computer. Sry I haven't been on in awhile, I'm going through a lot of family problems.
  28. C

    Antiviral Treatments for POTS or Orthostatic Intolerance?

    Awesome blog. I look forward to reading it. I really need help with my OI and this blog seems so relatable. I think the biggest issue with IVIG is it's so expensive and insurance won't cover it (at least mine won't). My aunt uses it for: hypogammaglobulinemia and my best friend for...
  29. C

    Antiviral Treatments for POTS or Orthostatic Intolerance?

    Interesting question, look forward to seeing more responses. The immunomodulators, specifically immunovir, give me horrible tachycardia (180 bpm), not sure why and no doctor has tried to explain this. Equil. doesn't give me tachycardia but hasn't helped OI at all. Never been on...
  30. C

    Anything like florinef?

    Thank-you for your well written and though out response. I will try and read about it when feeling better.