• 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. joyce.swing

    Nanoneedle update: finding what's in the blood

    Thank you, Janet DaFoe, for posting this with the handy dandy link to OMF. So shocking that just a few dollars, really, could make a huge difference in the speed in which this critical information is developed.
  2. joyce.swing

    Has anyone taken Ketotifen for MCAS?

    You do not mention dietary changes - have you made them? I have had the most help with my symptoms with a pretty strict low histamine diet. I am esp strict with how I handle proteins - get them very very fresh, or fresh frozen, cook and then immediately freeze what ever I do not eat right...
  3. joyce.swing

    Neurofeedback for CFS/ME -any advice, comments appreciated

    Another way to think of it is as circular - poor quality sleep, little deep sleep means that the restorative benefits that should accrue from sleep aren't or aren't as much. Improve sleep, the person wakes feeling refreshed - less brain fog etc. I dont think we know enough about the disease...
  4. joyce.swing

    Introductions

    Just a quick hi for now. I am 66 yrs old, had ME since age 42. Tried lots of things. On lots of meds. I have pretty severe Orthostatic Intolerance, burnt out POTS and take steroids and desmopressin (DDAVP) and fludrocortisone, and salt, head of be tilted up, support hose, antidepressant all...
  5. joyce.swing

    Losing hope - my endo thinks I have Cushing's

    Sorry, just saw this now. I will send you more info by PM.
  6. joyce.swing

    Withdrawing from clonazepam/Klonopin

    @Barx I was taking 1 mg at night and some more during the day. Most days less than 2 mg. I withdrew very slowly, and not on a schedule as above. I found that I could cut down fairly quickly initially, and then began to have withdrawal symptoms and had to go very very slowly. I was on...
  7. joyce.swing

    Losing hope - my endo thinks I have Cushing's

    I too have chronic renal failure. It took a little while to diagnosis because I was dehydrated, rehydrating with IV fluids. However, it is there. I also felt discouraged. I got this diagnosis, along with several more in a short period of time. I have ME/CFS. I guess because the rate of...
  8. joyce.swing

    Horrifying article in Sunday Times

    Yes and I wonder who & what jobs?
  9. joyce.swing

    Ambien/Zolpidem - problems with withdrawal?

    I had been on clonazepam for 13 yrs and have been trying to taper off over the past couple of years but ran into difficulty b/c of withdrawal side effects. More than one physician has strongly encouraged me to stop clonazepam because of it CNS side effects - and I have problems with cognition -...
  10. joyce.swing

    Horrifying article in Sunday Times

    Thanks for printing out the article. I dont subscribe so couldnt see it online. what kind of paper is the Sunday Times? A tabloid? I hope.... I am thankful not to live in the UK.
  11. joyce.swing

    Physicians/Clinics providing IV saline on site

    I have the same problem. It costs mega bucks to get IV fluids that cost virtually nothing to produce. Hate it. I have medicare insurance, which will cover if there is something in the fluids besides normal saline. So, I would suggest getting your doctor to give you something - multivits or B12...
  12. joyce.swing

    Question for Klimas / Rey Patients

    It is now the day after your appointment, PhoenixBurger. I am wondering if you went, and how the appointment. I hope you will give us an update.
  13. joyce.swing

    Has Anyone Seen Dr. Kogelnik?

    San Diego#1, Thanks Yes the Saline IV does help - I have not always been convinced of that. Actually what I need help with is orthostatic intolerance - on standing my BP was going down to 70/50 and I couldnt handle that. So, although I do have a diagnosis of POTS I am not really clear if this...
  14. joyce.swing

    Has Anyone Seen Dr. Kogelnik?

    I have seen Dr. Kogelnik recently and what I have to say about the visit is very similar to posts I read earlier in this thread; so I do not want to repeat too much. He is very personable. I liked him. He is very much a believer that the root cause of ME/CFS is viral. (He mentioned that he...
  15. joyce.swing

    Has Anyone Seen Dr. Kogelnik?

    Jacque, It is now 2 1/2 months later. I would love an update on how the treatment is going, what your experience is with side effects, and benefits, if any, this soon.