• 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. bspg

    Telemedicine expanded for Medicare recipients due to coronavirus

    Agreed. I understand why the two way video communication is beneficial but it's not practical. 😞
  2. bspg

    Telemedicine expanded for Medicare recipients due to coronavirus

    Source: As coronavirus spreads, Medicare gets telemedicine option
  3. bspg

    Getting Social Security in the US?

    https://howtogeton.wordpress.com/ has a wealth of information.
  4. bspg

    Looking for insight on Mitoswab results

    I just noticed there was another page in the report that included these results. I don't think my doctor mentioned these. Does this mean they did the Mitoswab Plus test?
  5. bspg

    Looking for insight on Mitoswab results

    Hey everyone. I just got my Mitoswab results back today and I don't know what to make of them. I'm hoping that there are others here who are more knowledgeable and may be able to provide insight on what they mean. My complex I tested borderline low and complex IV tested normal. However, my...
  6. bspg

    What has helped you with ebv or cmv induced CFS?

    Valtrex has really helped me with EBV and HSV, but before I found someone willing to prescribe it for me, liquid elderberry extracts were a godsend. It was the only thing that enabled me to get out of bed when I was severely ill. This is the specific one I used (4 times/day). It worked...
  7. bspg

    How long for CellTrend and Mitoswab Results?

    That's really helpful. Thanks @Gingergrrl!
  8. bspg

    How long for CellTrend and Mitoswab Results?

    Hey everyone. I had recently got CellTrend and Mitoswab testing done and I'm trying to get an estimate of how long it will take to receive the results? Also, does anyone know if these companies release results directly to patients? Or do I have to wait to hear from my doctor? Thanks!
  9. bspg

    A Medical Abuse Hotline is Coming

    Hey everyone! I learned of this recently and wanted to share here. An organization called Health Justice Commons is starting the first ever Medical Abuse Hotline and is seeking donations to get started. The hotline will be available for anyone to use (I think this is US only?) and they hope to...
  10. bspg

    Just had first appt with Dr. Kaufman

    @Gingergrrl I am alive. I've been wanting to post an update but just too exhausted. Thank you for thinking of me! :heart: Long story short: I'm still seeing Dr. K. I've had improvement in many symptoms but am still not very functional overall due to extreme exhaustion. Seeing an immunologist...
  11. bspg

    Anyone here taken imatinib/gleevec?

    I've been posting in my mast cell support groups and a few people have spoken up, saying their ME, MCAS, and dysautonomia all improved with Imatinib. :thumbsup: Obviously everyone is different and it may not work for me but this is encouraging to hear. :)
  12. bspg

    Anyone here taken imatinib/gleevec?

    I'm not sure how Imatinib works. The science is beyond my level of comprehension. I know that it is a tyrosine kinase inhibitor (TKI) and not a monoclonal antibody but I don't know what tyrosine kinases do or why inhibiting them might help MCAS. If anyone can explain how TKI's work (simply) I...
  13. bspg

    Anyone here taken imatinib/gleevec?

    Thanks @Ema. Those are really interesting. I probably have some senescent cells that could be cleared out. I often joke about being a 31 y.o. trapped in a 80 y.o. body :D My real concern with taking the imatinib is the immunosuppressive aspect of it. I get sick often and have crazy high...
  14. bspg

    Anyone here taken imatinib/gleevec?

    Thanks @Learner1. I'm not really sure. He mentioned it briefly during our last appt but didn't say much other than it is an option. He and my new PCP actually met in person at a mast cell conference recently. She too mentioned imatinib for me today during our appt but said she doesn't have a...
  15. bspg

    Anyone here taken imatinib/gleevec?

    Thank you @Gingergrrl and thank you @Ema! :) @Ema I'm sorry it to hear it didn't work for you. Have you found success with anything else?
  16. bspg

    Anyone here taken imatinib/gleevec?

    My doctor's want me to try it and I'm curious what others experiences have been with it. If you have tried it: 1. Did it help your MCAS? 2. Did it help your ME (energy levels, PEM or flu-like symptoms) in any way? 3. Did you experience any problems or side effects from it? 4. What dose were...
  17. bspg

    Holy crap, I'm so sick right now.

    Ugh, how awful! I hope this isn't the case for me but if it is, I guess I'll just have to live through it. It's so strange how we react so differently to the same drugs. I haven't had a single side effect with acyclovir which I wasn't expecting at all. I'm glad you were able to push through...
  18. bspg

    Holy crap, I'm so sick right now.

    Thank you and I will read this. It sounds like we have similar issues--were you ever diagnosed with an immune deficiency or autoimmune disease (if you don't mind me asking?) Feel free to PM if you want to answer but don't want to do it publicly.
  19. bspg

    Holy crap, I'm so sick right now.

    Oh my goodness, thank you so much for your reply @JeanneD! It is SO miserable and I'm so happy to know I'm not alone!! :hug: Yes, I 100% agree and will take any relief I can get. The saline gargles are about all I have left at this point (besides analgesics) and they definitely soothe things...
  20. bspg

    Holy crap, I'm so sick right now.

    Thanks @Gingergrrl. I was not tested for anything else although I did get my EBV antibodies retested 2 weeks ago and they are all still elevated. This marks at least 3 years now that they have all been positive and elevated but I've never had mouth ulcers or anything like I'm experiencing now...
  21. bspg

    Holy crap, I'm so sick right now.

    After catching up on @Hip's thread here, I sort of wonder if this could be an effect of the Acyclovir I've been taking for 2 months. Maybe there's a connection?
  22. bspg

    Has Anyone Done Mystery Shopping?

    Ooh. I'm curious to hear about your experience with this. I looked into it years ago but never tried it. Keep us posted!
  23. bspg

    Holy crap, I'm so sick right now.

    I'm one of the (lucky? unlucky?) people w/ME who still get sick. And whatever I caught recently is really kicking my ass! :cry: It started on Monday with a mild sore throat and increased body aches. By Tuesday I had white stuff on my tonsils and throat, ear pain, post nasal drip, increased...
  24. bspg

    Positive EBV VCA-IgM for at least six months. false positive?

    Also, what if a patent has elevated, abnormal EBV antibody patterns for multiple years but is always negative on PCR?
  25. bspg

    Positive EBV VCA-IgM for at least six months. false positive?

    Sorry if this is ignorance on my part, but can't historical record vs. active/recent infection be distinguished by the presence of IgM antibodies?
  26. bspg

    For those who still catch colds/flu: do you go to the doctor for it?

    Just wondering how others decide to go in or not.
  27. bspg

    Changing triggers, breakthrough symptoms...how do I deal with this?

    After initial worsening, many of my MCAS symptoms improved: IBS, constant runny nose, post-nasal drip, itching. Now things seem to be changing/creeping back in and I don't know why. I suspect that I'm experiencing the beloved "this didn't used to be a trigger but now it is / sometimes my body...
  28. bspg

    Seeking information on long-term outcomes with Dr. Kaufman

    I'm always amazed by the breadth of things Dr. Kaufman knows. How does he know about so many things?! I feel like most doctors don't know their ass from a hole in the ground and he's over here diagnosing all this crazy stuff. He's a wizard! ╰(•̀ 3 •́)━☆゚.*・。゚ Also, I agree with @Rlman in that...