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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. Cyndia

    Looking for a doctor in NYC

    I can totally appreciate how important it is to have somebody competent and good when feeling so totally awful. I'm glad he was able to be helpful to you. Sorry you had that experience with Dr Levine! She blows me off when she is swamped if I'm seeming too needy, as in after a severe autonomic...
  2. Cyndia

    Looking for a doctor in NYC

    That is just exploitive. Not ok. If he took on a super active care management relationship with patients then maybe but 10.00/min is price gouging a vulnerable population.
  3. Cyndia

    Valtrex and increased heart rate?

    Thank you! That gives me hope to hang in there. Part of my HR increase is rolling PEM due to reduced function adjusting to the Med. I think. I'm hoping if the Valtrex can work for me, that all of that will back off. I'm at 2 months and only a couple weeks at 1000/mg/day due to reactivity to it...
  4. Cyndia

    Long term Valtrex users curious

    Were you taking the Valtrex to lower EBV levels or just the Herpes? Sorry to hear you didn't get much improvement on it...
  5. Cyndia

    Long term Valtrex users curious

    I'm using it to treat ME/CFS. No cold sores. Going after the EBV first, then maybe adding Valcyte. Thank you. It's taken me 6 weeks to go from 500, to 750, to 1000. I feel like crap on it. Lower function etc... still going to try and see what that 3.5 to 4 month window feels like. My...
  6. Cyndia

    Long term Valtrex users curious

    Hi Sharks, So that's not that long compared to the years I was imagining. That's great that the Famvir was so helpful. Did anything help the EBV? Can I ask how long you've been off it and how you're maintaining?
  7. Cyndia

    Long term Valtrex users curious

    I just started Valtrex 1000 mg/day. My EBV and HHV6 IGG/IGM levels are elevated. I know from Dr Lerner's work that people stay on it many years. I'm curious about how it's going for long term users? Did side effects abate when improvement kicked in? Did you get a good result in your first...
  8. Cyndia

    Valtrex and increased heart rate?

    Yes, my Heart rate is up about 10 points with every dose increase, then after a couple weeks starts to head back down again. I have daily POTS symptoms since starting it and have lost 20 points of function on the MEEPs scale. I have worse headache, mild nausea and wooziness, in general, feel...
  9. Cyndia

    Partial remission for a day

    I've had 4 or 5 partial remission days over the 2 years I've been sick, that were definitely PENE/brain fog improved, clear, functional days. Mine also only lasted 7-8 hours. They were random, out of the blue and despite logging the particulars of my life away about supplements, diet, hydration...
  10. Cyndia

    MDs in Vermont...?

    I don't think he said. You might recognize him from his blog post? Here's the blog post he wrote http://immunedysfunction.org/northampton.html That's all I know ~
  11. Cyndia

    Clinical Geneticists, and their usefulness (or lack thereof)

    The Neurologist I went to regarding my systemic and muscle fatigue ran a GAA blood test, which confirmed I am a Pompe carrier. Pompe Disease is a glucose processing disorder of the muscles, including the intercostal rib muscles which make it hard to breath. Depending on your hero or homogeneity...
  12. Cyndia

    MDs in Vermont...?

    OK, thanks for that - Oh, so DeMeirleir is in Reno NV now?
  13. Cyndia

    MDs in Vermont...?

    Hi Daffodil, I just looked her up and yes, she's in Plaatsburgh NY, Just across the lake from Burlington, so only about 2 hrs away. I'm a little nervous about seeing a lyme specialist rather than an ME/CFS specialist. Do you know much about her? She doesn't have a web site. Here's her info...
  14. Cyndia

    MDs in Vermont...?

    Thanks GG, I found this glowing recommendation from Michael Murphy a guy in Vermont, maybe he is who you are thinking of? Here's the blog post he wrote http://immunedysfunction.org/northampton.html and there are several North Hampton Wellness Centers - he was referring to this one...
  15. Cyndia

    Looking for a doctor in NYC

    I just googled him and can't find any practice information for him in NY - is he still in practice there?
  16. Cyndia

    MDs in Vermont...?

    Hi Zoe, Have you had any luck finding anyone? I'm in Vermont too. I'm thinking of seeing Susan Levine in NYC. I had hoped to find someone closer like Boston, or Dartmouth Hitchcock or upstate NY but no luck as of yet...
  17. Cyndia

    Low Cortisol

    My update is that I'm taking a holiday from DHEA and Pregnenalone so I can retest my cortisol levels in 2 weeks to see if I've made progress. I found that I would crash from being overstimulated by rhodiola, same if I take B complex or the DHEA and Pregnenolone every day. I think if you aren't...
  18. Cyndia

    Swaying?

    Malls are very difficult. High ceilings, overlook balconies, see through stairs, all very difficult to negotiate for me. Lots of sound, smell and movement, chemical smells.... I avoid them if possible. Being on top of my blood sugar before and during is helpful.
  19. Cyndia

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Its low. Thank you, I'll check out butchers broom.
  20. Cyndia

    Swaying?

    Not so much when I'm still, I feel like I list or weave when I'm walking outside and have a large visual field. I also have a really hard time when driving and hitting bumps and my head bobbing up and down or around, so its weird whether it is originating from within me in response to...
  21. Cyndia

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Any suggestions on what kind of tea?
  22. Cyndia

    Low Cortisol

    Hi Cubbies2016 I also just got my saliva cortisol levels checked and they are very low. My naturopath recommended I continue with Ashwaganda 500 mg 3X/day and start with Pregnenalone 25 mg with breakfast and a week later start DHEA 5-10 mg sublingual once daily. These are cortisol precursors...
  23. Cyndia

    Ashwaganda?

    I think Ashwaganda has been helpful for reducing stress related inflammation and slowly restoring some adrenal function. My naturopath recommended taking 500 mg 3xday. After several months at this dose, I'm finally finding that it makes me tired, so its great to take in the early evening and at...
  24. Cyndia

    Pristiq versus Zoloft antidepressants

    I heard that - thanks dadouv47 :thumbsup:
  25. Cyndia

    Pristiq versus Zoloft antidepressants

    Hi Soc, I know this is an old thread, but if you're still on here, I was wondering if you could describe some of the differences you experience regarding the energy low of ME/CFS and Depression? I'm trying to sort my energy out. My Doc and psychiatrist say fatigue and cognitive issues are due to...