• 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. T

    Looking for POTS meds without POTS diagnosis

    Yes, I've actually done it before. I get hypotensive and tachycardic. The actual tilt table is interesting to me because of the chance I could get a drug like midodrine prescribed. I've heard it has some significant drawbacks though
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    Looking for POTS meds without POTS diagnosis

    I'm having some anxiety about taking yohimbine. I'd be grateful to hear about your experience beginning supplementation with it, and if you had a "learning curve" in figuring it your dose or managing initial side effects. I take Straterra and I'm guessing the blood pressure and anxiety side...
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    Looking for POTS meds without POTS diagnosis

    Wow, that really cool! What else might I want to know in terms of size effects or interactions? Anything in particular my doctor/psychiatrist might want to know about me taking yohime?
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    Looking for POTS meds without POTS diagnosis

    I've been trying to get a tilt table test to establish a POTS diagnosis but it's taking a long time. I've got preexisting mental health issues, and I've had some success with antidepressants notably nortriptyline (Pamelor) and to a lesser extent other NET inhibitors (Straterra, Cymbalta). They...
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    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Thanks, that's helpful. The immune system clearly provides a number of cases In the dark indeed. But this research has given me something to hold, I've been in the speculative mood ever since Tuesday night! Speculations aside, I'm very encouraged by all the bright minds working on all this...
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    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Hmm. Do you have an example that illustrates this in humans that is as inconvenient as CFS?
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    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Coming from an evolutionary perspective, it's hard to believe that such a state is a "mistake", that hypometabolism is unhealthy. Coming from a conscious, emotional perspective: WHAT THE HECK IS YOUR "PLAN", BODY! A part of me wonders whether an aspect of modern life is sabotaging the "off...
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    Interview with Harvard neuroscientist Dr. Michael Van ElZakker: chronic fatigue vagus nerve link

    I'm going to borrow this post to share something hopefully helpful. Last year I participated in a vagus nerve simulation study for the rare syndrome Post Orgasmic Illness Syndrome. Shortly thereafter I developed problems with wanting to move/leave the house/memory in addition to POIS (which I'd...
  9. T

    Reverse Mitochondrial Damage 101

    But does this compare to the phospholipid NT Factor product? I don't know if either that NT Factor powder has extra lipids that regular lecithin doesn't, or if it is just a fancy-wrapped lecithin powder? Because if it is powdered lecithin, then I'd definitely just go with Seeking Health PC
  10. T

    Reverse Mitochondrial Damage 101

    This is an interesting thread. I've benefited tremendously from lecithin, but I want to take it to the next level with the NT Factor. Thing is, it's derived from soy, and I wonder if the negative responses here have to do with that. I have been using sunflower lecithin and have not experienced...
  11. T

    High homocystine, but why? Methylation report inside

    I do :( I took B6 again after I was discharged, because I wasn't told about the high level. That very day I was able to get a printout of alllll the labs they did, and there it was a high B6. I was feeling quite worse that day, terrible I found out just hours too late before I took another dose...
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    High homocystine, but why? Methylation report inside

    Hi everyone, I've just gotten results back from a methylation blood panel done after I was just hospitalized. :( Long story short, I was dealing with neurological symptoms similar to Myasthenia Gravis, but once I was hospitalized (and taken off my supplements) I got better. After being...
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    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    Well lucky me! I started taking Nordic Naturals Cod Liver Oil 2 weeks ago. Though I just looked at the bottle, and it has a range of 0-20 iu per serving...
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    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    Thanks for the reply! I don't take any right now. I had too many bad experiences, but they were long ago. I found a post on here from 2 years ago saying I tried hydroxycobalamin and I didn't do well. But I read today again on Heartfixer I really shouldn't. I might give it a try again, my...
  15. T

    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    I just went to Google and opened up sharing to anyone with links, go ahead and try again
  16. T

    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    And another thing to add: after doing more reading on Heartfixer, I've decided to add Low Sulfur Diet to my list of things to add. Anyone have experience with being on a low histamine AND low sulfur diet at the same time? I have a feeling I'm going to be eating the same thing over and over for...
  17. T

    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    From Heartfixer: Ooops... I think this is going on. ALSO, does anyone know of a good ND who can treat me over Skype? They probably would want to see me in person, I live in Virginia if that helps.
  18. T

    After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

    Dear everyone! I am happy to be able to say that I am finding some results after reattempting methylation supplementation! I am here to find out how to continue this by beating side effects I am now experiencing from "revving" my cycle. I have known about methylation and have had my SNPs since...
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    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    I actually had a short period of good functioning during the long time I was taking betaine hcl, but it was hard to place it with anything. I know from my genetic Genie report that I have 3 homozygous BHMT mutations, 02 04 and 08. Im wondering, I'm taking small 100mcg doses of methylfolate...
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    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    Also I realized I tolerate another supplement, betaine hydrochloride. I was taking 600mg a day some time ago because I thought I had a candida problem in my gut, as it makes stomach acid more acidic. I understand this is like TMG. This is strange since I did not tolerate the TMG supplement I...
  21. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    Excellent info. I have been taking 100mcg of methylfolate for the last few days and can't tell that it's making anything worse. Ive heard that taking B12 first is the best thing to do, so i think I'll just start taking it now. I tried hydroxocobalamin and felt pretty bad, surprisingly. I'll be...
  22. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    Could you post some info about Rich? First I'm hearing of him. And what's in the Neuro Health Formula? I've tried to start methylation but I found I don't tolerate anything except methylcobalamin it seems. Would it help to take methylcobalamin for some time then begin again with methylfolate?
  23. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    Yes I've tried TMG, could not tolerate it even in small doses
  24. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    A quick look online, and I don't even see anyone selling less than 400mcg methylfolate. Makes me wonder if I am extraordinarily sensitive...
  25. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    So I took 400mcg for ~3 weeks, that seems smaller than a lot of people. Could I sell be taking too much, or is there another issue?
  26. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    I took 400mcg once a day, and quit after 23 days. So quite small amounts over an extended period of time. I tried taking 400mcg once every other day, and I could tell the negative effects were back again already
  27. T

    Took folate, felt sick, stopped. Then had 5 days of great mental clarity. Then back to normal. Why?

    Hi, So like I said, I took folate (methylfolate to be exact) and felt quite bad. I stopped, then experienced excellent clarity of thought for 5-6 days. The benefits went away and I returned to my normal, struggling self. I have a decent understanding of methylation, but I have no idea why I...
  28. T

    COMT and methylfolate

    On this topic of dopamine levels, I MUST have higher dopamine levels since I can barely tolerate the majority of methyl donors. It's further corroborated by the fact I have to take an antipsychotic (read: dopamine receptor blocker) to prevent psychosis. I have been very frustrated in trying to...
  29. T

    SNP Testing

    I cannot speak with experience as I've only had mine done through one company, but I'm pretty sure the trend is to go with 23andMe. They are extremely professional and the cheapest
  30. T

    I have a lot of BHMT and AHCY mutations, among others. Can you advise me?

    I have taken the supplement TMG to try and correct my BHMT mutations. Again, like with most methyl donors, I did not tolerate it well and I had to stop after one dose of 1000mg (I felt nervous and agitated). I keep hearing how BMHT is the "short cut" of the methylation cycle, and it can help...