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    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. erist

    Morning tremors

    Hi all - Haven't posted here in a while because I have been in a state of partial remission for the past year or so with the methylation protocol plus a few other interventions. However, recently I have been having very difficult wakeups again combined with new symptoms. I have had tremors for...
  2. erist

    Abilify and energy

    After 4, 5? months of pretty good eneger I hit a crash and am currently in it. Tired for past 2-3 weeks. POTS flaring. Etc. Could just be stress. Could be because there was an interruption in methylation protocol. Bumping up abilify slightly to see if it helps. Anyone else found this thread that...
  3. erist

    Methylation Protocol Diary

    Well I finally got my SNPs back from 23andme. Would love any help interpreting these. Maybe I should be trying more adeno and hydroxo then the methyl? I am in a bit of a crash the past 2-3 weeks. Both POTS and fatigue acting up :( You have 1 heterozygous (yellow) mutation(s). These are...
  4. erist

    Methylation Protocol Diary

    Here are my results after 5 months of experimenting with the methylation protocol (which has definitely helped) Most recent number is to the right Methylation Panel results: Glutathione (oxidised) .45 (.16-.5) .48 Glutathione (reduced) 3.0 (3.8-5.5) 3.9 SAMe 207 (221-256) 230 SAH 42.6...
  5. erist

    Abilify and energy

    Well I went off the abilify to better test what it was doing and about a week later I started being unable to get out of bed in the morning for many hours (2-3 usually) again. I went through like a week of that (amazing how QUICK I got used to being able to get up in the morning again, even...
  6. erist

    Methylation Protocol Diary

    Well, this holiday season has been the first time in over a decade that I have been able to get away with light-moderate amounts of alcohol without feeling terrible for 1-3 days afterwards. So nice to be able to have a glass of wine with dinner and not feel sick the rest of the night. Didn't...
  7. erist

    Abilify and energy

    It is still relatively new. I have only been on it about a week and a half. My PEM has greatly improved over the past few years, unless I do something that trashes my nervous system like weightlifting. (or sometimes randomly for other reasons as well) I have not pushed it to test it. I don't...
  8. erist

    Article -- How the Brain Cleans Itself

    Please be careful with LO. Lithium is lithium, whatever form it is in, and lithium is quite hard on the thyroid, among other things. Lots of people have found some help with low-dose LO for various symptoms, and some people even recommend everyone taking a lithium supplement, but I recommend...
  9. erist

    Florinef Questions

    I am starting Florinef soon. Salt tablets just don't seem to be cutting it anymore, though they are still hugely helpful, and it is night and day when I am consistently drinking 4+ liters of water a day plus salt tablets than when I forget for a few days. I will keep this thread in mind and go s...
  10. erist

    Methylation Protocol Diary

    NAC has sharply decreased obsessional thinking. To a much higher degree than I hoped (probably about 50% after 10 days). I continue to get spike in tinnitus and burning skin for about 24 hours after every mb12 injection, but overall the negative effects seem to be decreasing (but not noticing...
  11. erist

    AdenosylB12 intake == boost in testosterone?

    I started getting morning erections again after adding ADB12, but I also added DHEA and HCG injections at the same time (and had a doubling of my testosterone levels) so I couldn't say which one of those was the prime helper.
  12. erist

    Abilify and energy

    Recently, I decided to try a very low dose of Abilify (.5-1mg/day as opposed to "standard" a/d dose of 5mg/day or anti-psychotic dose of 30mg/day) as an augment to the (useless) SSRI I have been on for a number of years trying to get at the fatigue and the depression. (Not going to wade into...
  13. erist

    Low fat diet for lyme?

    My LLMD wants me to try a low->no fat vegan diet to go along with antibiotic treatment because it supposedly helps reduce biofilms that lyme and other pathogens can use to protect themselves. This is pretty much the opposite of the paleo diet I have gotten accustomed to over the past 6 months or...
  14. erist

    Scared to start abx

    Starting NAC now (to help with OCD), we'll see if it helps other stuff too!
  15. erist

    Methylation Protocol Diary

    just finished graphing all my symptoms from past 2 months obsessions sharply worse over past 2 months fatigue up and down depression slightly worse anxiety slightly worse pelvic pain much better somatic stuff (this is hand tingling, burning feelings in skin, agitation) much worse sleep all...
  16. erist

    Methylation Protocol Diary

    My lyme/chronic fatigue doc wants me to do daily glutathione suppositories but I have not been able to afford them yet. My OCD tendencies have been horrible lately, so I have added NAC. Other than that I still have the burning skin that I associate with the b12 (AND with benzo withdrawal). I am...
  17. erist

    Scared to start abx

    Don't think it was chicken pox. Do think it was possibly some sort of reaction other than an allergic reaction. I guess we'll see when I try another one!
  18. erist

    Scared to start abx

    Almost a month and symptoms have reduced by 95% but still hanging out at 95%. Transient hives and itchiness on chest and legs and arms, often for a few hours at night, after a shower, or just randomly. Nothing like it was those, and the nasty welts are all gone (were gone about 2 weeks after...
  19. erist

    Methylation Protocol Diary

    I am still struggling trying to parse out whether the methylation protocol is doing anything, if so whether it is good or bad, if it is bad whether it should be pushed through or not. Certainly I feel more "wired/tired" than before I started the methylation protocol, but hard to draw...
  20. erist

    Methylation Protocol Diary

    Super super agitated today after taking Niacin. Related? not sure. No niacin in the future. Methyation definitely making me a bit more emotionally labile (I think that's the nice way to say that I scream at the dog and start crying for no apparent reason, right?)
  21. erist

    This really made me think

    Well, yes and no. It's certainly proof that this abilities exist within our brains, and that given either the right chemicals or the right conditions, we can perceive the world in radically different ways that may be very useful to us (or, take your pick, have the ability to perceive other...
  22. erist

    This really made me think

    (excellent points by Sam Harris. Everything I was trying to say, but better! :) Thanks nanonug)
  23. erist

    This really made me think

    Clearly the good neurosurgeon has never had a dream nor done a psychedelic or else he would know that subjective time and objective time don't matter at all. All of that, quite literally, could have happened in the seconds before he woke up. This isn't to say it is useless, I believe that these...
  24. erist

    Methylation Protocol Diary

    Also thank god for symptom and treatment diaries. Was walking around the house tonight like why the ()#*$ is my tinnitus so bad when I haven't done an mb12 shot in over a week? (Tinnitus is, I believe from tolerance withdrawal to klonopin, started after about 4 years on, increases if I drop my...
  25. erist

    Methylation Protocol Diary

    Another mb12 shot last night after halving the MTHF and folinic acid. As usual, today I have better energy/less fatigue but quite a bit of intense somatic symptoms (tinnitus much worse, burning skin) as well as some mood instability. Got ab12 in the mail today. May start alternating the two...
  26. erist

    Methylation Protocol Diary

    Have slowly noticed less reactions to the b12 injections (doing twice a week) so I decided to jump right up to 800 μg of mthf and folinic acid for the past week. Did fine. Did an Mb12 shot last night and feel awful today. Tinnitus terrible, skin burning, depressed, OCD symptoms high. Maybe will...
  27. erist

    Scared to start abx

    Yeah, she pulled me off them. Will decide next steps once we see how long it takes my body to clear them. Got worse, started burning more than itching, etc. I'm still hoping some sort of detox rather than an allergy to doxy, since once I decided to take it I was hopeful, having heard how useful...
  28. erist

    Scared to start abx

    Started doxy about a week and a half ago. Started at 100 on my way to 400. After about 3 days I started getting big red bumps on my arms, after increasing to 200 I have them all over my chest, legs, and back as well. They itch and come and go during the day. Fading from pink and then back to...
  29. erist

    Chills after BM?

    Comes and goes, ebbs and flows, like everything. Past few days it has been very bad. Extreme burning after (otherwise normal) bowel movements, and chills, shaking, etc. Going full paleo seemed to help for awhile (or maybe it was just coincidence) but now is back. I will try cutting out tea...
  30. erist

    What and how to cook, when you can't cook

    crockpot and rice cookers are heaven (you can cook lots of things in rice cookers). Smoothies and shakes also great for when cooking AND eating seem like too much work. (I know you have a vitamix so what about more nut and avocado smoothies, etc) Pre made food seems expensive! You can get 45...