• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. marlunette

    Do animals other than humans get CFS/ME?

    Dr. Naviaux's has proposed that ME/CFS is similar to dauer states/torpor/hibernation in animals: https://www.washingtonpost.com/news/to-your-health/wp/2016/09/06/chronic-fatigue-syndrome-may-be-a-human-version-of-hibernation/ I imagine that it's possible for other animals to get stuck in these...
  2. marlunette

    Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

    @seamyb Good luck with the oils! Since you revived the thread I thought I'd jump in with my own experience with them. I went from moderate to extremely mild ME/CFS through mold avoidance and treating MCAS. Almost two years ago I went into remission after starting methylB12 injections. I was...
  3. marlunette

    Fasting regenerates the immune system?

    A few years ago I did a few 3-day fasts because of this research. I didn't feel great doing it, but I felt better for a few days after. I quit doing them because I was mild enough to get a full time job and handling mild me/cfs with a job was enough to handle, without adding fasting. I have...
  4. marlunette

    Mildew versus Mold?

    What matters most is if it is impacting you. Mildew is a type of mold that grows on surfaces. The term refers to a variety of different molds. When mold avoiders talk about mold as a cause, they are usually using mold as short hand for any number of things that could be triggering reactions...
  5. marlunette

    What possible cure/treatment/research excites you the most?

    Suramin sounds so tantalizing because it's already in production, considered quite safe, and in theory only has to be used for a few rounds. CDR is the most exciting theory to me because it allows for multiple triggers and takes into account the complexity of our bodies.
  6. marlunette

    Zinc is reducing my hypersensitivity to smells!

    Thank you for the encouraging words! I am very aware of the copper issue. My first experience with ME/CFS symptoms was after getting a copper IUD placed. I developed a serious reaction to all metal in my body after it was removed. I am wondering if I depleted my zinc when I had the IUD ten...
  7. marlunette

    List of ME/CFS Recovery and Improvement Stories

    I wanted to chime in with my remission story - I went from moderate to quite mild with mold avoidance. I have since gone from quite mild to remission with B12 injections and supplementing with B vitamins and various micronutrients. I have still have MCAS and I still get ME/CFS symptoms from...
  8. marlunette

    Zinc is reducing my hypersensitivity to smells!

    I started taking zinc about two months ago and I have been quite surprised at how helpful it has been. For the first time since being exposed to mold it feels like I am strengthening my blood brain barrier. The instant sense of inflammation and headache from smelling certain chemicals or strong...
  9. marlunette

    Does anyone with CFS get back to 100% ever?

    I have gone into remission from ME/CFS symptoms twice (the first time I didn't have it for a full six months though). However, my sensitivities to environmental triggers worsened with both episodes and never fully recovered. So I can say I'm in remission from ME/CFS but my MCAS is definitely...
  10. marlunette

    Speaking of the desert...who here has went there and how long did you stay for before improving?

    I am definitely lucky that I can tolerate Phoenix and I recognize that many mold avoiders can't. I think that Erik style mold avoidance and sabbaticals are incredibly important and useful, but at the same time, I don't think it's clear that every person who feels sick in the Bay Area is...
  11. marlunette

    Speaking of the desert...who here has went there and how long did you stay for before improving?

    @Slushiefan The illness seems to be so unique for everyone that it is impossible to say whether desert living will help you or for how long. It also depends on where you go in the desert, and what the underlying triggers are for you. That being said, the bay area is notorious in the mold...
  12. marlunette

    alcohol helps me?

    It had similar effects on me. If you do end up drinking more frequently because of symptom relief AND you are on a restricted diet from stomach problems, be careful of your B1 intake. Alcohol can deplete B1 and some restricted diets can be low in B1 so it could be a double whammy.
  13. marlunette

    Has anyone recovered in the Bay area ?

    They also tend to be some of the prettiest parts of Sedona which is generously gorgeous!
  14. marlunette

    Should I see Dr. Chheda? & General questions about treatment

    I can't find my last B12 test and I haven't tested it after starting the shots. I have had my serum B12 levels tested regularly over the years and it has never been low. As serum tests just pick up what is circulating in your blood and not what is being absorbed, it's possible to have a decent...
  15. marlunette

    Other connective tissue illnesses (beside EDS) w CFS?

    Mast Cells are in connective tissue throughout the body. I have found that my hypermobility issues get worse when something is triggering my MCAS and it gets better as I treat my MCAS.
  16. marlunette

    Connecting CFS/Dysautonomia/Cranial Instability/EDS/Mast Cell/Autoimmunity

    Thank you for posting this! His description of the connections between syndromes and the progression matches my experience so well. Even before I got ME/CFS I had unusual health issues and I always thought that doctors were missing some underlying cause that tied all of my disparate symptoms...
  17. marlunette

    Should I see Dr. Chheda? & General questions about treatment

    I see Dr. Chheda and she has been quite thorough and helpful for me. I originally decided to see her because I wanted to get screened for MCAS and the wait for Dr. Kaufmann was too long. She was thorough in her workup and had over 30 vials of blood drawn, though it didn't turn up much of...
  18. marlunette

    Has anyone recovered in the Bay area ?

    Yes! Sedona is amazing! I did a one week sabbatical there a couple of years ago when I was still living in Seattle. I had planned for two weeks but a heat wave made me go back inside earlier than planned. I also chose a campground that was safe and cheap but not that pristine :( I am excited...
  19. marlunette

    Has anyone recovered in the Bay area ?

    @Strawberry I never made it to the peninsula but I did take the ferry to Victoria, BC a couple of times and felt much better there. I think the air on the peninsula is probably similar! My husband and I considered exploring the peninsula or the islands to see if we wanted to move there but...
  20. marlunette

    Has anyone recovered in the Bay area ?

    The Bay area has a horrible reputation for people doing mold avoidance or pursuing locations effects. Everyone reacts differently but the Bay area seems pretty universally bad. I got sick while living in a moldy house in the midwest and then moved to Seattle. Once I was there I got worse and...
  21. marlunette

    Environmental causes of cci and related problems

    Just found this video of Dr. Andrew Maxwell and thought it might be appropriate here: The presentation argues that vagal nerve problems can trigger dysautonomia, leading to MCAS and eventually hypermobility that triggers structural disorders. He includes toxic exposures as a potential trigger...
  22. marlunette

    Environmental causes of cci and related problems

    Interesting! I have spend time in Carefree and didn't notice any difference from Phoenix, but maybe Happy Valley is better? I live in an old adobe house in an older, flood irrigated neighborhood, though my lot is desert landscaped. My house feels like it has a great microbiome and I think all...
  23. marlunette

    Help me to set goals with CFS

    I feel like Tony Robbins is charismatic, but his audience is definitely not people with physical limitations. I have found that Stephen Covey and the 7 Habits of Highly Effective People has really helped me to adapt to being ill. A lot of self-help speakers and authors draw on the book directly...
  24. marlunette

    Hypermobility and treating a thumb that keeps falling out of place?

    Another update: My left thumb starting falling out of place again so I got a splint for it too. My right thumb has been falling out of place every night in its splint, but my left thumb stays put. It seemed like the polysaccharides were no longer helping so I quit taking them. Other than wearing...
  25. marlunette

    Hypermobility and treating a thumb that keeps falling out of place?

    Update on my thumb: The splint helped but my thumb still hurt. I had to wear it throughout the day or it would fall out of place and it got harder to massage back into place. Then my left thumb started popping out of place while I was asleep and continued to do so while I was awake. I started...
  26. marlunette

    Painful ear cartilage anyone ?

    I used to wake up with sore ear cartilage fairly frequently. It was one of those things I thought happened to everyone so I never pursued it. This blog post lists it as a possible symptom of histamine intolerance (https://mainstreetvegan.net/histamine-connection-victoria-moran/) but I haven't...
  27. marlunette

    Is there a reasonable way to travel to a doctor?

    Amtrak Coach buses have luggage compartments. I can't speak to how they handle wheelchairs but when I was healthy I moved cross country via Amtrak and one leg of the journey was on a bus. They handled my five large cardboard boxes and bicycle in box without an issue. Wheelchairs are more fragile...
  28. marlunette

    Hypermobility and treating a thumb that keeps falling out of place?

    Thank you! It's reassuring to know that it's not painful or problematic eventually. I woke up with my left thumb subluxing, so it seems like this isn't going away any time soon, lol.
  29. marlunette

    Hypermobility and treating a thumb that keeps falling out of place?

    They ran through the Beighton 2017 criteria and I don't meet it. They think I have Hypermobility Spectrum Disorder. I am not sure if I can consider that an official diagnosis or if I have to see a different specialist before I can say I have HSD. I kind of ignored it because ME/CFS and MCAS were...
  30. marlunette

    Hypermobility and treating a thumb that keeps falling out of place?

    Thank you for your support! I will see if my husband thinks he can help with kinesiology tape! Based on the Youtube videos I don't think I'm going to be able to apply it with y left hand. I'm very right hand dominant, haha.