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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. Wendy B.

    Gupta theory on amygdala overreacting...can someone help explain why some do or don't end up with it

    Thanks. I'll try watching these. Hmm so in this scenario, a pre-existing chronic infection or autoimmune state would preciptate the cfs phenomena of the over-defended state. So is resolution of the chronic infection or autoimmune condition necessary for recovery in the gupta paradigm? Also, why...
  2. Wendy B.

    Gupta theory on amygdala overreacting...can someone help explain why some do or don't end up with it

    Hmm Im still trying to understand - from Gupta's point of view. Here's the video im referring to (below)...If i gather right, it's a sort of "neuro-ptsd" that occurs from a combo of emotional and physical trauma, such as getting a flu or maybe epstein barr virus during college finals when you...
  3. Wendy B.

    Gupta theory on amygdala overreacting...can someone help explain why some do or don't end up with it

    Hi there. I had attempted to begin training for Gupta about five years ago for CFS, but at the time could not adequately distract myself to benefit. I am looking into brain retraining again after seeing a video of Gupta's pop up in my Facebook feed. This is looking promising to me. Question...
  4. Wendy B.

    Do we burn more calories since exertion is more work for us?

    Hmm.
  5. Wendy B.

    Do we burn more calories since exertion is more work for us?

    I read some of a thread on a nearly similar topic from six years ago, but it focused more on weight gain or loss that some of us tend toward....with some explanations for gain or loss being lack of exercise, the state of our digestive systems, our inability to burn/utilize fats or carbs, or...
  6. Wendy B.

    Did you have a vaccination not long before developing ME/CFS?

    Got MMR booster vaccine in college about a month before symptom onset.
  7. Wendy B.

    Root Cause Protocol (Morely Robbins)

    Who has done this program and gotten well or better? I'm trying to do it now...about 8 months into it...i don't tolerate supplements hardly at all, so doing it mostly through diet, which is slow - going, but recent labs show promising change in iron levels (supposed to be a good thing). If you...
  8. Wendy B.

    Iron testing in the tissues

    I'm attempting to the Morely Robbins magnesium protocol, and just started searching on Phoenix Rising here for anyone having success with it...saw this posting...I found out today that blood bank may do therapeutic phlebotomies (where they draw your blood and dump it instead of donate it)...
  9. Wendy B.

    Lightning, reverse etc. says cortisol is too high, but what if too low?

    Right, so do you or does anyone know how, given that pcfs tend to have low cortisol, Lightning therapy or Reverse or Mickel type therapies make sense of their ideas that pcfs have an overactive stress/cortisol response to events, activities, life etc? They must have some explanation. I haven't...
  10. Wendy B.

    Lightning, reverse etc. says cortisol is too high, but what if too low?

    I'm thinking of doing one of these types of therapies. I know more about amygdala retraining than these others. Question: My understanding is that the stress/cortisol response is considered to be too high in cfs, but so many of us (me included) have too low cortisol on testing. Can someone...
  11. Wendy B.

    Web Link for Montoya's regimen I can share with my heart doc?

    Hi there. My POTS doc thinks HHV1 and 2 exacerbate autoimmune caused POTS, but I don't have 1 and 2, I have HHV6 and EBV. He started me on Valacyclovir 1000 mg/day, been on 11 days now and I may feel some better, certainly not worse. He told me about Montoya's work with cfs but was not well...
  12. Wendy B.

    What's the *cause* of alpha wave sleep disorder?

    Benzos do increase beta activity... http://www.ncbi.nlm.nih.gov/pubmed/15223295 The meds work for a while, but at what risk? My sleep disorder was *bad* before benzos, and benzo seemed to help. After the fall out of having taken Ativan, my old bad sleep would be a cake walk.
  13. Wendy B.

    What's the *cause* of alpha wave sleep disorder?

    Alpha wave intrusion, or "alpha delta" sleep is common in CFS... http://www.ncbi.nlm.nih.gov/pubmed/8153772 Heather Ashton's great web site http://www.benzo.org.uk/manual/bzcha01.htm
  14. Wendy B.

    What's the *cause* of alpha wave sleep disorder?

    I didn't realize there were follow up comments to my post since July. I'm not getting notifications. Perchance, do you have the alpha wave disorder? Have you had a sleep study to show that the alpha stim reduces this activity. Or do you know if it's the meds you are taking? As for meds, benzos...
  15. Wendy B.

    Any Scuba divers out there w/severe CFS?

    I think I'm going to rent a sea scooter and see how it is in the pool. I'm worried that it will exhaust my arms just holding onto it. But want to find out. Here is another diver propulsion vehicle I found...Still in the prototype phase.... This is so cool!
  16. Wendy B.

    Any Scuba divers out there w/severe CFS?

    http://www.pbsboatstore.com/seadoo-sd5542.htm?feed=Froogle&gclid=CJuI_oPMtMACFYqEfgodMwoA8Q A Sea Scooter...that might help with snorkeling! Anyone used one?
  17. Wendy B.

    Any Scuba divers out there w/severe CFS?

    That would be very cool :)
  18. Wendy B.

    Any Scuba divers out there w/severe CFS?

    http://www.autismspeaks.org/news/news-item/scuba-diving-therapy-man-autism Scuba is becoming therapy for some things like PTSD, Autism, Traumatic Brain Injury. There are also a lot of instructors who are trained in teaching people with special needs now. Of the five places I inquired with in San...
  19. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Sushi, thanks for the response. I did get that your autonomic specialist had to quit Scuba due to his POTS and disorientation, but thought his decision was more based on his personal condition than an understanding that it would be dangerous for anyone w/CFS. Gary, I PM'd you, thank you so...
  20. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Hi again. I'm not really that concerned with PEM...that seems like something I can test on my own with trial and error i guess. I did try at one point to do the two day cardiac test supported by Staci Stevens, but San Diego Cardiology Center would not do it as they were not familiar with it...
  21. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Hi there, thanks for your response. Gary, do you know of any literature about cfs and diving by chance? Your personal experience is the first I've come across. You mentioned you only had trouble putting on your gear, but not the actual diving. I'm guessing your exercise intolerance was not so...
  22. Wendy B.

    Any Scuba divers out there w/severe CFS?

    ah, great, real life experience! Gary, how severe is ur cfs? Do u have the exercise intolerance? are you a doc, butydoc?
  23. Wendy B.

    Any Scuba divers out there w/severe CFS?

    yipes so unless my docs are scuba divers, looks like the only way i might be able to confirm the safety of diving/breathing compressed air at depth with our metabolic issues is thru San Diego Hyperbarics...A dive physical for special conditions is $107. OUCH. Being disabled is expensive except...
  24. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Snowdrop, I'm not in a position medically or financially to get on an airplane right now and go tropical diving, but I was wondering if the weightlessness might make it a possibility for the future. I might have been able to before a severe set back from a pharmaceutical reaction. With more...
  25. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Wow, did not know this. (only read a bit)...Will read more soon. Thank you!
  26. Wendy B.

    Any Scuba divers out there w/severe CFS?

    I've often found those severity scales a bit difficult to fit into.For example, I fit into the 20% category with dr. Myhill's scale with many features, yet rate worse than that with some of her examples, and yet I am freuqently out of the house (via someone else who drives me). In her scale, I...
  27. Wendy B.

    Any Scuba divers out there w/severe CFS?

    I have difficulty walking a block or two much of the time, pretty bad orthostatic intolerance (100/37 bp after 10 mins upright...although in 20 yrs I've never fainted once), I have to recline or lay down much of the day, very severe sleep dep, etc etc. However, I'm inspired to do things, even...
  28. Wendy B.

    Any Scuba divers out there w/severe CFS?

    Hello. I used to Scuba, mountain bike, and rock climb and I miss it...Any divers out there with severe cfs who still dive (warm water, drift water etc)? Anyone know of any studies about how our mitochondrial/metabolic-challenged systems excrete the excess nitrogen? I called DAN (diver alert...
  29. Wendy B.

    What's the *cause* of alpha wave sleep disorder?

    Alpha stim increases alpha wave right? How does that help? arent we trying to get rid of alpha? i did do neuro training but it didnt help.
  30. Wendy B.

    What's the *cause* of alpha wave sleep disorder?

    Can anyone comment on what we know at this point about the actual cause of *why* the alpha wave is going on for many of us? I've got an horrific case of it...sleep doc said worse he'd seen. It was bad to begin with, made worse by the treatment: benzodiazepines (mostly Ativan). I'm off benzos...