• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Zebra

    Completely blackout goggles / eye mask?

    I just noticed that Bucky now also sells "Blockout Shades" which I have never used, but wanted to mention to you. https://bucky.com/collections/blockout-eye-shades
  2. Zebra

    Completely blackout goggles / eye mask?

    Yes! When fitted tightly, "Bucky 40 Blinks" eye mask is awesome. It is contoured to fit against the skin of the face without putting any pressure on the eyes. The strap is adjustable (with Velcro). Maybe give it a try ahead of time to see if it suits your partner? www.bucky.com
  3. Zebra

    Comment by 'Zebra' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    Hey, @Howard Hope you are hanging in there as best you can. Yesterday I needed to look up something medical for my mom and I came across this rare condition, which naturally made me think of you. 😁 If you already know about this or if it doesn't resonate with you, no worries. I just wanted...
  4. Zebra

    Sjörgen, Immunodeficiency and Abilify

    Hi, @Alex, I am too ill to share my personal experience at this time, but I did want to respond as best I can. I am assuming that your sister has been diagnosed with immune deficiency by a Board Certified Immunologist and has been diagnosed with Sjogren's Syndrome by a Board Certified...
  5. Zebra

    Comment by 'Zebra' in 'Pray'

    My dear @Sunshine, My jaw dropped to the floor when I read your post. I am so sorry this is happening to you. Prayers have been said over you. Praying for physical, mental, and spiritual strength to overcome this infection. xoxo Z
  6. Zebra

    My son has been sleeping 14 to 16 hrs a day

    Hi, @Hope_eternal I can hear, and understand, the concern in your posts about your son's sleeping habits and declining baseline. Seemingly out of nowhere (perhaps a delayed reaction to attending a far away medical appointment), something similar happened to me. I was NOT able to stay alert...
  7. Zebra

    Comment by 'Zebra' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    Thanks for the update, @Howard. I hate it that you are still dealing with such horrific gastrointestinal distress. It's MADDENING to me no physician has taken it upon themselves to figure this out for you.
  8. Zebra

    Comment by 'Zebra' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    Thank you so much for the update, Howard. Very glad you have an abdominal MRI ordered. Best wishes, Z
  9. Zebra

    Diagnosed with long COVID instead of ME- will this harm chances of treatment?

    Hi, @SpinachHands As others have said, I don't think this change in diagnosis will harm your partners access to care and treatment. Here in the States, I feel like Long COVID is considered a more legitimate disease than ME/CFS for myriad reasons. At Stanford University, where I get my...
  10. Zebra

    Comment by 'Zebra' in 'Shelter Skelter / 5 and 1/2 Weeks / Please Vote'

    Sometimes having many less-than-ideal options makes decision making more difficult. Yikes! It's smart of you to solicit opinions, even though you are absolutely under no obligation to act on them. If the relocation is indeed temporary-ish, my vote is for Assisted Living. I understand that...
  11. Zebra

    Daily episodes of blurry vision and pain around eyes

    Please see an opthalmologist, rather than an optometrist. An opthalmologist can measure the pressure in your eyes and they can also examine your optic nerve. If they come across something abnormal, they can bump you up to a neuro- opthalmologist, who is better equipped to diagnose...
  12. Zebra

    Help me Interpret this please

    Hi, @Blazer95 I've read through some of your posts on PR about various test results and symptoms. Have you or your primary physician considered Sarcoidosis as a possible cause of your ME/CFS? The etiology of this disease is unknown, but can be triggered by an infectious process. Some of...
  13. Zebra

    Do you have muscle weakness? I think I have found a potential ME/CFS subset

    Hi, @ChookityPop I came across this article "Myositis with endomysial cell invasion indicates inclusion body myositis even if other criteria are not fulfilled" and wanted to share with you, just in case you haven't seen it...
  14. Zebra

    A seemingly unexplored simple explanation for ME/CFS and my experiments with it

    Thought it might be helpful to have a link to Liver Fluke infection: https://www.cdc.gov/parasites/liver_flukes/index.html
  15. Zebra

    Do you have muscle weakness? I think I have found a potential ME/CFS subset

    Hi @ChookityPop First, thank you so much for sharing! That is very generous of you. Second, that is the most thorough and exhaustive muscle pathology report I have ever seen. Wow! When you are ready, and if you feel comfortable doing so, would you mind keeping us posted on your continued...
  16. Zebra

    Myositis blot - anyone done this? Results?

    Hi! So in the US this is known as a Myositis Panel, often performed at the Mayo Clinic. Your positive antibody points to a Scleroderma/myositis diagnosis, but on its own is not diagnostic. Have you spoken with your doctor about next steps? Usually this would be an EMG and possibly a muscle...
  17. Zebra

    Long term drugs for chronic pain

    When *muscle* pain, or myalgia, was one of my worst symptoms, a rheumatologist/functional medicine specialist recommended Magnesium Malate. It made a HUGE difference for me. I took it for several years, until that muscle pain subsided. Here's a link to some general information about Magnesium...
  18. Zebra

    NIH 2023-2024 Webinars thread

    Hi, @Murph How lovely of you to organize and post these resources for us! Really appreciate it!
  19. Zebra

    Comment by 'Zebra' in 'Fiya water/my daughter'

    @sunshine44 I'm **OVERJOYED** that God answered your prayers and that this physician is making a thoughtful and intentional effort to include you in your daughter's healthcare. And, because it seems like your family is incapable of recognizing how instrumental a role you played in this...
  20. Zebra

    Experience at Metrodora?

    Hi, @Hoosierfans Thank you for letting us know about this magical place! I have taken a pretty good look at the website, but I don't see any information about wether or not they accept insurance. Of course , it could be staring me in the face and I could be missing it! Do you have any...
  21. Zebra

    To Have a Pet or Not with ME/CFS, Fibromyalgia and/or Long COVID + a Good-Bye to River

    Pet ownership and companionship is something I think about, and dream about, on a DAILY basis. It makes me really sad that I haven't had a furry friend of my own in 30 years of adulthood. In addition to the physical challenges of caring for pets, which is simply not possible for me right now...
  22. Zebra

    Respite care needed

    Just bumping this thread up in hopes that someone can help @Rumhelka
  23. Zebra

    Difficult med change decision re Crohns

    @Hope_eternal One last thought regarding viruses that can reactivate during immune suppression ... In my case HHV-6 and Varicella Zoster were considered likely culprits of my ME/CFS, but I have no real proof of that other than elevated IgG titers well after the onset of my illness. If I had...
  24. Zebra

    Will we ever get an apology ?

    100% agree. I don't quite remember when the Long COVID epidemic began, but I had to stop listening to the news about it because it was making me so bitter, angry, and resentful.
  25. Zebra

    Difficult med change decision re Crohns

    Hi, @Hope_eternal I have read many of your posts on PR and you are such a great mother to your son with CFS that is often makes me tear up. Anywho ... usually before a person is to receive a biologic drug, immune modulator, or immunosuppression, the prescribing physician is obligated to test...
  26. Zebra

    Comment by 'Zebra' in 'The Battle for Christmas Rages On / Gimme Drugs / SSI'

    Hey! I don't know if this would be helpful to you or not, but I recently learned about Lidocaine patches (after an unplanned/unwanted surgery) and they are such a help to me. They can be worn up to 12 hrs a day. I use mine at night so the (nerve) pain doesn't disturb my sleep. There are tons...
  27. Zebra

    Comment by 'Zebra' in 'Let’s Murder a Disabled Person'

    @Howard I'm so sorry this happened to you, Howard. I recently learned that folks in Arizona are allowed to carry guns, which I thought was pretty wacky, and now someone has brandished their weapon at you. Yikes! I hope there is a special place in hell for folks who target the elderly...
  28. Zebra

    Role of dysfunctional glycolysis...?

    Hi, @shadowraith Have you already investigated Glycogen Storage Diseases as an alternative diagnosis to ME/CFS? Many years ago I had a very smart and committed neurologist who tested me for Pompes's Disease, and we were both surprised when it came back negative. It would have been nice to...
  29. Zebra

    Comment by 'Zebra' in 'The “D” Word (including questions proposed / questions answered)'

    @Howard: I wish you all the best; all the time. Thank you for keeping us posted!
  30. Zebra

    Best ME / CFS docs that do Telehealth / consults?

    Location might make a difference, depending on the doctor. I have several physicians that confirm I'm in the State of California before they will proceed with a video appointment. Hope you are able to find someone excellent with or without state restrictions!