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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. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    Thank you for taking the time, energy, and care to correspond! I’m from Chicago, and I have no family or network here. I came for the neurosurgeon, who’s the best in the world, really, for this particular condition. California happens to have a better array of neuro rehab options than Illinois...
  2. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    Thank you, @Gingergrrl, for this generous and heartfelt reply. I’m so sorry for your loss, and also for the reality that your Mom wasn’t able to be in a more peaceful situation as she neared her passage. After a 6-night stay at Cedars, which was supremely taxing as only hospital stays can be, I...
  3. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    I’ve learned that there are three categories for aftercare considerations within the US medical system: 1. Inpatient Acute Rehabilitation 2. Inpatient Longterm Acute Care 3. Inpatient Skilled Nursing I won’t likely qualify for category #1. This is likely for the best, as it requires more daily...
  4. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    How do I change a thread’s title?
  5. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    Thank you. I imagine that title change would be less triggering for others and may elicit more help. Unfortunately, while my primary need is to convalesce, my purpose in having to find a way to do this within a rehabilitation facility is because my spine will need to remain stable and I have a...
  6. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    Convalescence is the goal. However, there are no such options within our medical system. Rehabilitation facilities are the closest we have in the US.
  7. EsetIsadore

    Post-Surgical Rehabilitation Options Needed - California, 4-6 Weeks Duration - Severe ME

    I’m wondering if anyone here with severe ME has gone to a rehabilitation facility within the US. Very soon, I will be heading to Los Angeles in order to receive a blood patch for a longterm CSF leak. We have just began a rapid search for a California-based rehabilitation facility that could...
  8. EsetIsadore

    New doc at Stanford

    I have remained very unimpressed, on the whole, both with Dr. Bonilla and with Stanford’s ME/CFS clinic. I still have an unresolved HIPAA complaint with them, as they lost my medical records. More recently, I had to pull my records to apply for SSDI and found very problematic errors (including a...
  9. EsetIsadore

    Clonidine

    I’m glad to hear of some successes with it. I remain wary for myself. My BP is fluctuating often wildly - one day this week at 135/85 and the next day at 82/49, both lying down.
  10. EsetIsadore

    Clonidine

    I did read about the trial just today. It’s okay with me if it were to have no effect. My concern is more that it could have detrimental effect. Did you have any difficulty coming off it?
  11. EsetIsadore

    Clonidine

    Clonidine was RXed for me at .1mg to take at night due to a recently diagnosed complex dysautonomia. I’m both curious to try it (since my heart at times pounds away at night) and concerned (since I sense that kicking into sympathetic drive is a compensatory mechanism vital to my body surviving...
  12. EsetIsadore

    New doc at Stanford

    I have chosen not to take the antivirals. For me particularly, he did recommend Bartonella treatment. He also recommended (and I am taking) low-dose naltrexone.
  13. EsetIsadore

    Low dose Naltrexone

    My first trial with LDN (1.5 initial, building up to 4.5 over the course of three weeks) went poorly (severe constipation, thirst, and insomnia). I stopped after one month. I re-started a week and a half ago. I’m taking .5 mg every three days in the morning. It’s not caused the previous...
  14. EsetIsadore

    Dysautonomia and POTS: An Overview

    Do you know what the pathomechanism is for EDS leading to OI or POTS, by chance?
  15. EsetIsadore

    Cardiology: What Testing May Be Relevant?

    I didn’t know there was such a thing!
  16. EsetIsadore

    Article Dec 23rd 2017: Aussie scientists discover CFS is real and may be treated with CCBlockers.

    In ultrasounds my own liver has looked gorgeous, other than a small calcified cyst likely caused by the malaria I had or another parasite along the way. I’ve not done the other testing. My own instinct for myself is that the liver isn’t where it’s at for me. I will certainly keep it in mind...
  17. EsetIsadore

    Article Dec 23rd 2017: Aussie scientists discover CFS is real and may be treated with CCBlockers.

    @mariovitali Thanks. I will make sure to have them checked ASAP. I stopped it over a month ago now, though. Since it says in all known cases, liver recovery has stopped at cessation, I’d assume all is now hopefully righted, even if it had gone awry.
  18. EsetIsadore

    Cardiology: What Testing May Be Relevant?

    Thank you so much, @Silencio and @Dechi! I really appreciate you both weighing in with hard-won insight, born of personal experience.
  19. EsetIsadore

    Article Dec 23rd 2017: Aussie scientists discover CFS is real and may be treated with CCBlockers.

    I haven’t studied the various CCBs to know their different mechanisms of action. And right now my cognitive function is low, so I ask your forgiveness in advance... Very recently, I did a multi-week trial on a custom-compounded low-dose (titrated up to 40mg thrice daily) Verapamil because I...
  20. EsetIsadore

    Cardiology: What Testing May Be Relevant?

    What about the two-day cardiopulmonary exercise test? I need to be super frank that I cannot imagine how I’d even begin that, much less survive it if I could, given that I now use a walker or wheelchair in the rare times that I leave my bed...but I’m interested in the experiences of my peers...
  21. EsetIsadore

    Cardiology: What Testing May Be Relevant?

    Thanks @jpcv. I’ll be doing Autonomic Testing, tilt table included, on 1/10. I’m unfamiliar with MUGA scans; I’ll go look them up.
  22. EsetIsadore

    Cardiology: What Testing May Be Relevant?

    Recently twinned Head & Neck MRAs (to rule out stroke pursuant to repeat Hemiplegic Migraines) revealed the incidental finding of severe left subclavian stenosis. I will need to head to a cardiologist for further evaluation, since I have advanced neurological symptoms that may or may not be...
  23. EsetIsadore

    Jen Brea gives Esther Crawley some good advice.

    Amen!
  24. EsetIsadore

    Ayurvedic 'second stage trial' success

    Ayurvedic treatment, when done according to correct differential diagnosis via traditional means and in the hands (and mind and heart) of a competent clinician, will be always customized. It ought not be one-size-fits-all for any given Western-medically defined disease. That’s purposeful - and...
  25. EsetIsadore

    Experience with carbonic anhydrase inhibitors?

    I didn’t realize that I wasn’t alone w/n the ME community in having lab results that appear like a “mild case of DI”. I realize this can be common in CIRS cases (which also applies to me). I’d not come across it related to ME, though. How common is it? Is anyone focused on examining this aspect...
  26. EsetIsadore

    Experience with carbonic anhydrase inhibitors?

    That’s an intimidating outline! Thank you for sharing it.
  27. EsetIsadore

    Article When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS

    Thank you for writing this, Judy.
  28. EsetIsadore

    Experience with carbonic anhydrase inhibitors?

    Thank you so much for sharing this with me!
  29. EsetIsadore

    Experience with carbonic anhydrase inhibitors?

    I am so grateful to all of you for this thread of conversation! I don’t have the stamina sufficient to read or to write like I’d like. But I’ll try my best... I’ve considered acetazolamide since my neuro-ophthalmologist recommended it to me a year ago for “vestibular-ocular reflex disorder”, as...
  30. EsetIsadore

    Experience with carbonic anhydrase inhibitors?

    Could you ask your doctor to prescribe via a compounding pharmacy for you? Then they can customize dose and delivery as well as remove excessive “inactive” ingredients.