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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. P

    Mutation in COL3A1

    Curious at to where are you getting the info that COL3A1 is benign ?
  2. P

    Mutation in COL3A1

    I'm using promethease and the heterozygous polymorphism A;G is listed as benign. A;A has a 6% frequency. G;G is normal. Am I reading this wrong ?
  3. P

    Mutation in COL3A1

    I got the information regarding associated genes from the eds wiki : https://en.wikipedia.org/wiki/Ehlers–Danlos_syndrome
  4. P

    Mutation in COL3A1

    @JamieS I couldn't upload on my phone. But the Gene is rs1800255, associated with pelvic organ prolapse and EDS. No significance in pelvic organ prolapse found in the heterozygous group.
  5. P

    Mutation in COL3A1

    Thanks, you guys are awesome :). @Valentijn What do you mean which specific mutation. I'm very new to this. I've attached a pic of my 23andme results. I appear to be homozygous (A;A).
  6. P

    Mutation in COL3A1

    Hi guys, I found out today I have the Mutation of the COL3A1 gene used to confirm a diagnosis of Vascular EDS. Does this mean anything on its own ? Should I look into further testing? Apparently the frequency of this allele Mutation in the population is only 6 % :(. Am I jumping the gun here...
  7. P

    B-12 - The Hidden Story

    The Methylb12 seems to convert to melatonin for me very quickly. Usually I supplement with the latter to get to sleep at night, so it'd be great if I can replace it with b12. However, this is too much. I slept long and deep last night, and still had to take an hour nap right after work today. I...
  8. P

    B-12 - The Hidden Story

    This is disheartening. The past few days I was experiencing big improvements in mental clarity and energy and everything. Vision was so sharp. It was adding the adenosylb12 and then, more importantly, the L-carnitine that really turned me on and woke my body up. And then just as I had hope...
  9. P

    B-12 - The Hidden Story

    Can someone please recommend a source of adenosylcobalamin? Seems it's hard to find as some brands have discontinued. Also, can't buy it here in Canada in stores. Thanks....
  10. P

    B-12 - The Hidden Story

    Oh really. Well I only thought Kidney problems because my eGFR was low enoguh for the lab to write a comment that it's consistent with mild decrease in kidney function - it's the only time they've made a comment about a test result.
  11. P

    B-12 - The Hidden Story

    Ok. One thing I forgot to post was my complete blood count results. Not sure if this is useful information. I've attached it here. The biggest thing that stands out is possible kidney dysfunction, however I've been supplementing with creatine for my workouts and I think that would lead to a...
  12. P

    B-12 - The Hidden Story

    Thank you I will update here once I find a doctor to work with. I've been getting random eye twitches in my right eye since I've started on this regimine. The only cause I could find online related to vitamin deficiencies however. I also read high levels of heavy metals in the blood could...
  13. P

    B-12 - The Hidden Story

    Well I'm taking a B-complex now twice a day, which as w400mcg methylfolate, plus I take another daily 1000mcg L-Methylfolate supplement (which I may discontinue as I now may get what I need strictly through the B-complex). So I don't think folate is an issue. Did you get improvements in...
  14. P

    B-12 - The Hidden Story

    Thanks @Learner1. I did a hair mineral analysis last year and tested high in Aluminum (12.5 ppm and range was 0-12) and moderately high arsenic. Lead, mercury, and others were relatively low, although they were still traces. I've never done a formal detox before. Maybe it's the aluminum being...
  15. P

    TMG was eye opening + need advice

    I don't know if this is significant, but I did hair mineral analysis last year which showed highly elevated aluminium (range was 0-12 ppm and I was at 12.5) and moderate levels of arsenic. Mercury, lead and the others were relatively low... I think the aluminum was from the red bulls I used to...
  16. P

    TMG was eye opening + need advice

    Thanks for the link I will definitely check that out tonight:)! I don't think stopping exercise is a tenable long-term solution. I did that for 3 years and I was getting worse. Arthritis set in my neck, I lost all my muscle I used to have when I was a bodybuilder, etc. I deal with the PEM by...
  17. P

    TMG was eye opening + need advice

    Hmm. Here are some results, they look normal to me: TSH: 1.99 mlU/L (0.30 - 5.60) DHEA: 4.9 umol/L (0.05 - 10.9) B12: 306 pmol/L ( >133) Ferritin: 64 ug/L ( 25 - 200) I don't remember saying that I don't get PEM; I definitely do. I feel wiped out after working out or doing anything physical...
  18. P

    B-12 - The Hidden Story

    Thanks for your reply :). Here's what I take as augmenting factors: vitamin C, D3, E, B6, K2, electrolytes every morning (containing magnesium, manganese, and potassium), Omega 3's, turmeric, Milk Thistle, calcium, chromium, Zinc, TMG, and Sam-E. What do you mean test - for vitamin/mineral...
  19. P

    TMG was eye opening + need advice

    Hey @arewenearlythereyet I live in Canada and CFS/ME is not even recognized as a real diagnosis. I was never diagnosed by a doctor because they don't believe it's real. So even if I was diagnosed, it would've been merely a condescending way for them to get rid of me ;). That said, I do have all...
  20. P

    TMG was eye opening + need advice

    It's not orthostatic intolerance. I've had my BP checked lying down then standing and it goes up slightly like it should normally. Dysautonomia also seems unlikely. Although I could do a 3 day ecg and go from there. I'm not always breathless when working out it depends on the day. I do have...
  21. P

    B-12 - The Hidden Story

    Sorry for jumping in randomly here without an introduction. I have a question. Is sleepiness, headache, and fatigue a common reaction from Methylb12? The fatigue hit me like a truck today. I'm currently taking 2 mg only. Does this mean I should stop or push through it? I also take 1 mg L-mtfh...
  22. P

    TMG was eye opening + need advice

    I will say that TMG initially was making me much better able to workout in the gym with a NORMAL level of fatigue, not the breathless, pale, faint feeling I'd normally have. All stimulants have this effect for me, though. And I use the word fatigue to efficiently and practically communicate...
  23. P

    TMG was eye opening + need advice

    That sounds a lot like my reaction to it. But it helped my anxiety so much which enabled me to function better. So I've stayed on it at a very low dose.
  24. P

    TMG was eye opening + need advice

    I think it might also be useful to say my Blood B12 levels were 306 pmol/L (range is > 133) or 414 pg/ml. It looks like I am not deficient, but i've also read that blood values may not be a true indication of how much is being used in cells. I do notice more energy on all of these supplements...
  25. P

    TMG was eye opening + need advice

    Hey there !! What was your bad reaction to the SSRI? Just fatigue and brain fog or anything else ? The problem for me is it works SO well on my anxiety and makes me more comfortable socially. The fatigue and brain fog reaction I assumed was also due to the fact that I had undiagnosed ADD (I...
  26. P

    TMG was eye opening + need advice

    Hmm ok maybe I'll cut back. I'm looking for CFS relief however, so I was hoping this methylation thing would help. TMG - my God - certainly did the first few days. My vision problems were corrected, it was amazing. Does this response indicate anything? Thanks so much for your responses it...
  27. P

    TMG was eye opening + need advice

    Thanks for the reply @Valentijn ! What about the MTHFR677 +/- gene. What supplements would you recommend for this? I know you can't give a definitive answer obviously but there's so much information here to digest that it's hard to know where to begin... So after the first few good days on...
  28. P

    TMG was eye opening + need advice

    Also, how can I know if I'm over- or under-methylating? I forgot that having the mthfr mutation could mean either. So is response to TMG, Same, ssris etc. A good indication? I do get side effects from ssris such as sleepiness and brain fog, but I function better with it.
  29. P

    TMG was eye opening + need advice

    Hi everyone, I'm new to this site and there's a ton I will need to learn over the next few years, but I since I responded very well to TMG supplement (3000 mg/ day) and I have some methylation mutations along with chronic fatigue syndrome, I figure I can get some improvement now whilst I spend...