• 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. determined

    methylation: VERY low, very slow.....results

    Update: I have completed 10 years of full time work. In addition to the methylation supplements, I found antihistamines (H1 and H2) to be very helpful. Last summer I experienced a very significant relapse, though. I got sick about once a month and was tired all the time. In my fall...
  2. determined

    Who else tried Vermox and felt massively better? (without having a parasite)

    How long did you take it and what were the results - please?
  3. determined

    Shingrix adjuvant QS-21

    On one hand, I believe much of the pain around my eyes and head is a form of post herpetic neuralgia, as my worst symptoms started after contracting HV. So maybe the Shingrix vaccine could help with the neuragia. If I contract shingles I believe that would be very detrimental to my nerve...
  4. determined

    methylation: VERY low, very slow.....results

    Hello everyone, it has been 5 years of working full time. It's not easy, and I definitely don't have the stamina of a normal person. I work and come home and don't do much else. I am also fortunate that my job comes with LOTS of vacation....I get about 4 months off a year (assuming I don't...
  5. determined

    Overstimulation With Small Doses Of Methylation Support

    Tigger, for me, the methylation supplements (methylcobalamin and methyltetrahydrofolate) are incredibly powerful at almost homeopathic doses. In several years I've never increased my dose and believe they have helped me tremendously. For you, how low is "low?" Maybe it's too much for you.
  6. determined

    methylation: VERY low, very slow.....results

    Hi Jennifer, Yes, I have stayed with the same, almost homeopathic, doses. And yes, I have added other vitamins as well, all in the same tiny doses. I use Thorne Methylcobalamin and Metagenics FolaPro. I drink my dose, although my teeth stopped hurting a long time ago. If you react to...
  7. determined

    methylation: VERY low, very slow.....results

    Hi all, I am going on year three of working full time. I can still exercise (okay in a water aerobics class with 70 year olds, but it's an hour long EXERCISE class!!!). I can also walk pretty fast and go for a few miles. I still believe that the methylation supplements were the answer to my...
  8. determined

    Completely eliminated my severe anxiety symptoms with three supplements!

    Thank you for posting this and updating, Hip. One of my main problems now is anxiety. Now that I'm working full time, I was attributing my anxiety to the pressures at work, but it seems so much more than that. I will experiment with oils first since I'm already taking turmeric. I also need...
  9. determined

    Telegraph Tomorrow - Exercise and positivity can overcome ME

    My long experience with this disease suggests that the exercise and positivity are an important part of "partial recovery." However, they come AFTER you get a bit better so you can actually exercise without getting worse. The positivity just comes naturally because, HOORAY!!!! YOU FEEL...
  10. determined

    methylation: VERY low, very slow.....results

    Hello everyone, I wanted to stop by and report on my progress. I'm still working full time and I've been able to add exercise like never before. My job is very demanding, but hopefully it will get a bit easier in a semester or two. I still have CFS. There are things that I can't do and...
  11. determined

    Anyone else afarid to take B's and keep putting it off??

    I was very much afraid for years and I didn't start for that reason, until, well, I finally did. But when I finally did start with "near homeopathic doses," I saw big results. So much so that I started work full time almost two years ago. My job is very rigorous, both physically and...
  12. determined

    methylation: VERY low, very slow.....results

    I have now kept my full time job for 1 and one half years. It has been difficult to be sure and I am far from "cured," but I think the supplements have created a major shift in symptoms away from the weakness and fatigue that made full-time work impossible for so long. I have never changed...
  13. determined

    Poll>>>Has anyone had success with graded exercise?

    I was asked which was worse....cancer or CFS. Cancer was by far more scary, but I really didn't have any symptoms since it was caught early. CFS easily wins the "more debilitating" category. When I had cancer people were bringing me food almost every day, and I had people running errands...
  14. determined

    Poll>>>Has anyone had success with graded exercise?

    I think when we find something to make us better FIRST, then gradual exercise can work. But something has to happen before we can tolerate any exercise at all. I remember very well when simply lifting up my arm to brush my hair was exhausting. This has nothing to do with deconditioning in my...
  15. determined

    methylation: VERY low, very slow.....results

    I have kept my full time job for one year now.....there were some struggles, and I'm not sure how long I will be able to work full time, but I really love my job and the social contact it provides. I am hanging in there. The methylation supplements really seem to have provided an ongoing...
  16. determined

    Cancer On Top Of CFS! :(

    Thanks Kati.....cancer is definitely unpleasant and scary but I have such fond memories of many of the nurses. Thanks to you for the work you did/do. P.S. How did you "tag me?"
  17. determined

    Cancer On Top Of CFS! :(

    Hi Andrew, I took epirubicin, 5FU and cytoxan.
  18. determined

    Cancer On Top Of CFS! :(

    Hi Awdbawl, I'm sorry to hear this. CFS can be more challenging to overcome, but the big C wins the scary contest, hands down! I had the same fears you have (although I didn't seem to have the wound healing issue you are worried about). I was treated with chemo and radiation, as well as...
  19. determined

    Introduction to Immunology through EdX starts March 2!

    No worries, Rosie. I've taken many courses on coursera and other sites and, while I've finished a handful, there are many others I started but didn't finish. Even when I don't finish a course, I learn a lot! I am so grateful to have these opportunities!
  20. determined

    Introduction to Immunology through EdX starts March 2!

    I just signed up; hope to see all of you there! It's free!
  21. determined

    Influence of graded exercise therapy on anxiety levels and health-related quality of life in CFS

    I'd have to look more carefully at the experimental design, but it seems logical to assume that those who are ABLE to partake of GET are going to be more likely to respond positively. My experience over decades with CFS is that one has to get better first and only then can the graded exercise...
  22. determined

    methylation: VERY low, very slow.....results

    Thank you, maryb. I've kept my job four months so far. It's hard, but I am still hanging in. We shall see.
  23. determined

    Flu shot? I'm not even tempted, but....

    I am wondering how many of us feel that trouble began with a vaccine. I am hearing a lot about H1N1 this flu season, and several friends have had pretty bad cases. I realize getting this flu would not be ideal, but I still don't want to risk the vaccine.
  24. determined

    perhaps silly questions about ATP supplementation

    Hi oh_noes I for one am skeptical about ATP drops or injections. By what mechanism does the body get it to where it needs to go? We need it INSIDE our cells. I used drops once or twice and ended up with heart palpitations. Given that some people can get significantly better and have near...
  25. determined

    Doxycycline?

    No I did not take methotrexate.....I took epirubicin, 5FU, cytoxan.
  26. determined

    Doxycycline?

    It's not possible to say that doxy did NOT improve my fatigue/weakness, but I had been using it for several years before my cancer and it wasn't a huge effect. chemotherapy was hugely effective in almost eliminating weakness/fatigue. (but I did have increased anxiety, pain so it wasn't all...
  27. determined

    Doxycycline?

    Here is a link to a discussion on doxy...but you have to scroll through the first 5 or six messages... http://forums.phoenixrising.me/index.php?threads/cd57-higher-now-with-methylation-supplements.14314/
  28. determined

    Doxycycline?

    I think its primary value to us is that it does modulate the immune system. Be ready for some start-up effects though. I've been taking it quite a while and I feel it has made a difference.
  29. determined

    Is it fibromyalgia or cfs?

    I agree with redrachel76 that exercise does help with fibromyalgia symptoms, and exacerbates the CFS symptoms. When I'm in "fibro mode," not only can I exercise but it helps (as does meditation and yoga). When I was in my worst CFS mode, even raising my arm to brush my hair set off the...
  30. determined

    Is it fibromyalgia or cfs?

    Maybe others who know the current consensus will weigh in, but I think they are both part of the same dysregulation. Dysregulation of what? It seems like EVERYTHING.