• 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.

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

Search results

  1. littlebird6180

    Unsure what to do

    I haven't posted in a while and was doing really well. I have a history of kidney stones and have been having on and off left flank pain since about thanksgiving. I finally caved and went ahead and got the recommended CT scan. Before the scan, I noticed I'd been starting to cough a bit more but...
  2. littlebird6180

    I've given up on all treatment

    Also, another update--I posted on here that I was suffering from terrible hand tremors. I went through a battery of tests and doctors all came up with blanks. Well, after stopping all supplements...my tremors stopped!
  3. littlebird6180

    I've given up on all treatment

    Glad you made the connection with your multivitamin. It often shocks me how long it takes me to make those kinds of connections! This made me think about a similar experience. For my POTS, I'm constantly told to take electrolytes and salt. I got salt sticks which are supposed to be the best of...
  4. littlebird6180

    I've given up on all treatment

    I'm really overwhelmed by all the wisdom and support. Somehow, you've transformed my words of defeat into making me feel like I'd reached a point of my own wisdom. Thank you for that. Yesterday, I actually did two hours of yard work in Miami in August and it made me feel great (and today I...
  5. littlebird6180

    I've given up on all treatment

    I posted a couple of times that I was doing really well on a cocktail of various b vitamins and other supplements and prescriptions. But since then, I've had a major turning point that has made me go off almost everything and I doubt I'll go back. I went to Costa Rica for dental work and had to...
  6. littlebird6180

    Has anyone here tried a FMT?

    Definitely not #1 and #2. Again, I'm not a doctor and have only recently started to really delve into this subject...but, from what I've read you want someone with no health issues and EVEN to get that person's stool screened prior to using it because some health issues can by asymptomatic and...
  7. littlebird6180

    Has anyone here tried a FMT?

    Honestly, I'm not referring to medical studies (although more and more research is being focused on this area) but patient stories who are doing the DIY approach. And I read through the entire website the power of poop. Both patients who have done it and the power of poop emphasize that fresh...
  8. littlebird6180

    Has anyone here tried a FMT?

    Hi there. Thanks for sharing. Was the implant from frozen stool or was it transferred "fresh" (immediately after donor's bowel movement)? From what I've read, the shorter the time from BM to transfer, the better and that frozen is not ideal.
  9. littlebird6180

    Low sulfite diet and Sulfite XX

    it's only two weeks, so no long-term risk. Just to clean out the accumulation
  10. littlebird6180

    Low sulfite diet and Sulfite XX

    I've been doing a lot better but still seem to struggle with crashed after I eat. Long story short, my doctor says because of a genetic mutation I have, my body isn't getting rid of sulfur fast enough and so it's built up. She wants me to eat a low-sulfite diet for two weeks while taking Sulfite...
  11. littlebird6180

    Has anyone here tried a FMT?

    I agree and especially because it seems to be so low risk and so full of potential.
  12. littlebird6180

    Has anyone here tried a FMT?

    Yes, I did. I wrote the poster but haven't gotten a reply yet. It's fantastic for him though that it's provided so much relief.
  13. littlebird6180

    Has anyone here tried a FMT?

    oh sorry, it's Fecal Microbiota Transfer. So taking stool from a healthy person and with an enema, putting it into your intestines.
  14. littlebird6180

    Has anyone here tried a FMT?

    I'm curious if anyone here has tried a FMT (fecal microbiota transfer) at home using donor stool that is fresh, not frozen? I just read a really intriguing story of a male that had IBS and CFS for several years and did an FMT using his brother's stool. The results were immediate and profound...
  15. littlebird6180

    Hydroxocabalmin injections side effects

    I've been doing really well with alternating folinic acid, methylfolate and niacin. I'm having a kidney stone right now but have otherwise been good. I just spent a week in NYC and according to my phone walked an average of 7 miles a day and was able to keep up with everyone. There was only one...
  16. littlebird6180

    an update

    I just wanted to give an update here because I find I tend to come here during my worst times for help and I wanted to make sure I shared my "best" with you as well. I got some incredible advice here and it helped pull me out of one of the worst crashes I've had - the advice combined with help...
  17. littlebird6180

    Possible Lupus

    Thank you so much. This is really helpful. We are on the eastern coast of the US (her north, me south). I will pass this information onto her and keep you posted. Of course, I can't speak directly for her but am pretty familiar with her health and don't remember her mentioning any of these...
  18. littlebird6180

    Possible Lupus

    Thank you, this is extremely helpful. I tried to reassure my friend by saying that the diagnosis is just a name for what she already feels. That it's not like getting this diagnosis means her health is about to rapidly decline or change from what it is. If anything, having this diagnosis means...
  19. littlebird6180

    Possible Lupus

    I have a very close friend who recently got to be evaluated by my ME doctor. She finally got all her test results and the doctor reviewed them with her today and told her that she has a lot of auto-immune markers outside of what she thinks is ME. She said she thinks she has Lupus and that she...
  20. littlebird6180

    Hydroxocabalmin injections side effects

    @Jigsaw Sorry, I want to make sure I don't give ANY incorrect info. So just to be clear, it's L-5-MTHF and I was lucky cause amazon accidentally shipped me two bottles when I only ordered one! Here is what I'm taking...
  21. littlebird6180

    Hydroxocabalmin injections side effects

    @Learner1 @Jigsaw @alicec I just need to say a TREMENDOUS thank you! I went off everything except for the atenolol, LDN and Ketotifen and I started L-MTHF. The past 3 days I feel like a brand new person. I have clean energy, NO crashes, no muscle pain and almost NO brain fog. I haven't felt...
  22. littlebird6180

    If there were no barriers, financial or otherwise, what treatments would you try

    This really hit home for me. I too would invest in his research if I could and I'm pinning a lot of hope on it. Right now I guess it seems like there's a lot of research showing promise and maybe just hanging on for another few years until they develop a treatment. I hope to see Whitney recover...
  23. littlebird6180

    If there were no barriers, financial or otherwise, what treatments would you try

    After reading more about stem cells, seems like I'm going to scratch that idea off my list
  24. littlebird6180

    If there were no barriers, financial or otherwise, what treatments would you try

    Someone on here said they had a friend who had recovered through stem cell therapy. Does anyone know more about stem cell therapy effectiveness? Rixumitab scares me - feels too risky although I certainly don't blame anyone for trying.
  25. littlebird6180

    Hydroxocabalmin injections side effects

    I was. I had a really strong year, my strongest ever. Felt almost normal (or what I imagine to be normal). Then around Christmas, a few things happened... Got costochondritis, bad cold, pneumonia, started hydroxyb12 shots, then got the flu (tested positive for flu a). I also took a trip in this...
  26. littlebird6180

    Hydroxocabalmin injections side effects

    Thank you so much, I've been bedridden and in hell so I was off computer for a bit. I'll try methylfolate.
  27. littlebird6180

    If there were no barriers, financial or otherwise, what treatments would you try

    I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try. For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember). Are there therapies that exist that hold...
  28. littlebird6180

    Hydroxocabalmin injections side effects

    Yes, I think she's pretty commonly known so it wouldn't take much investigating. She's the best doctor I've ever seen in my life and I've seen (and wasted so much time on) hundreds. I hope your experience is also positive. I also feel nearly the same level of confidence and gratitude towards...
  29. littlebird6180

    Hydroxocabalmin injections side effects

    Again, can you provide me with a source and the research you are citing? I'm not going to challenge my doctor based on one person claiming their treatment approach has no basis and that she "doesn't know what she's talking about". That language just isn't helpful, but having real concrete...
  30. littlebird6180

    Hydroxocabalmin injections side effects

    Yes, it's a bit frustrating because all the threads claiming it's a detox end without any follow up from the OP. So there's nobody confirming this theory.