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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    CBS / Ammonia / Glutathione

    anyone? please! my guess is I need folate and choline, but would love some advice
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    CBS / Ammonia / Glutathione

    if someone could comment on my SNPs I would be hugely grateful :)
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    CBS / Ammonia / Glutathione

    @Methyl Head hi! which website would you advise I put my 23andme data through to find my relevant mutations? Thanks :)
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    Chia or KDM?

    @Learner1 Thank you for clarifying that info for me. Now to find a lab and a doctor that will oversee these tests @Hip with regards to Dr Chia's enterovirus tests, I called his office yesterday and they said they used ARUP labs in Utah but they did not think they would take samples from abroad...
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    Chia or KDM?

    @Hip Thank you - Im interested is the EBV a VCA test? it seems EBNA, EBV VCA IgG and EBV VCA IgM would be the best to diagnose my levels of the virus. I see medichecks will do it for 79 pounds but I've heard they can be unreliable whilst I know TDL is well regarded. Shame that test in the...
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    Chia or KDM?

    @Hip Thanks Hip. Do you happen to know if TDL give titre figures or just a positive/negative for antibodies. If Im going to pay for testing Its not just a postive/negative test. Thanks! NHS to be fair did a lot of hormone testing for me lately so may try for the viral testing!
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    Chia or KDM?

    @Hip that's a really great and helpful document - thank you! I always get confused about which AV does what - I'm going to call Quest laboratory tomorrow to see if they receive samples from abroad. If not I will try to find a lab in London that is vaguely if at all similar to test EBV titres.
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    Chia or KDM?

    @Hip Thanks! that info is very helpful. As you're in the UK too can I ask which doctor you've found best? Im willing to try and consult with anyone at this point. Ive read the thread about Kaufman and Chheda and they seem to be having some success.
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    Chia or KDM?

    @Tammy I know colloquially mono in the US is glandular fever in the UK, but I thought "infectious mononucleosis" can also be caused by CMV?
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    Chia or KDM?

    @Hip as I understand it Valtrex has greater bioavailability than acyclovir so 4 x 1000mg valtrex is much more powerful than what I am taking. I am considering calling Dr Chia's office on Monday to see if they can offer any help - perhaps I could get a stomach biopsy done in the UK and sent to...
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    Chia or KDM?

    Hi all, Having gotten back to 70-80% functioning during the latter half of '16 and the first half of '17, I crashed hard in July. My overwhelming fatigue returned for a week and then I became ill. The NHS in the UK tested me, and I was positive for infectious mononucleosis (so most probably...
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    Vitamin C

    @drob31 very interesting i did not know about its effect on tyrosine hydroxylase. I worry that by taking Vitamin C I am effecting my copper situation. The low ceruloplasmin and plasma copper suggest not enough is bioavailable and I dont want to make that worse!
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    Vitamin C

    I wondered if anyone had any knowledge about Vitamin C? I currently take 6grams a day, and get a boost of energy in the 2 hours after I take each dose. Is there any risk to taking this much? I ask because I have low ceruloplasmin and low serum copper and do not want to negatively affect my...
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    Best doc in UK?

    Thank you! I will look into this lab. No luck on the aciclovir yet...
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    Best doc in UK?

    further to this, as im now starting aciclovir does anyone know where I can get comprehensive viral testing in London? obviously for as cheap as possible. Im also wondering about aciclovir, is it a drug you can take breaks on or will this affect its implications? and if it doesnt help can you...
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    Best doc in UK?

    My NHS gp tested for infectious mononucleosis when I became ill and it was positive - I assume that means EBV
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    Has anyone seen Dr Bansal or Dr Chaudhuri (UK)?

    Ive just seen Dr Bansal - he was very likeable and along with the sheet above ^ he proscribed me aciclovir (presumably to treat EBV which i tested positive for in July) If you can see he I would recommend it - but as with any other doctor there is nothing revolutionary he can do
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    Best doc in UK?

    Quick update: I saw dr Bansal yesterday - he was certainly one of the better and more likeable doctors ive seen. He did a few blood tests, which must be fairly complex as he said they will take 6 weeks to come back. As for treatment he prescribed me aciclovir - I tested positive for EBV in...
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    Best doc in UK?

    Sorry to hear about your troubles @Countrygirl - these GPs can be a real terror - any other better ones at your practice? I am seeing Dr Bansal tomorrow - I'm fortunate enough to have been approved by my medic insurance as my relapse may have been caused by EBV ( I tested positive in July)...
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    Best doc in UK?

    I just called st Anthony's and they booked me to see him this Saturday? Is there any reason that wouldn't be okay?
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    Best doc in UK?

    Quick update - I called the Richmond hospital where Dr Bansal works and was told that a message popped up on screen saying he no longer treated CFS and focused on allergies - does anyone have knowledge of this? Would he still be worth seeing?
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    Best doc in UK?

    Thank you all for the responses. I did see Dr Charles Forsyth - and his focus was from a nutrutional aspect. Forsyth found nothing concrete but I did recover significantly within two years - I trialled sups, gradually increased exertion and rested a lot. In July I tested positive for glandular...
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    Best doc in UK?

    Thank you - I'll look into Dr Weir. Yes looking for a CFS doctor - I became ill four years ago and improved alot but now am housebound. So any help appreciated
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    Best doc in UK?

    Hi all, Anyone got advice on best doctor in or near London? Even Europe considered. Many thanks.
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    TMG?

    @aaron_c very interesting that you should mention the other role os lecithin other than methylation. Because of my success with lecithin I tried 500mg of TMG today, and if anything felt worse. If lecithin was helping because of the methylation cycle it thus seems likely that TMG would help, but...
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    TMG?

    Hi @aaron_c Thanks for the reply! Do you know if b-12 and methylfolate are needed in the bhmt pathway? I have tried folate with b-12 before and not had much luck, so now I'm trying to go down this other methylation path. Also would you have any idea about the lecithin, TMG relationship? I want...
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    TMG?

    Hi All, Having improved somewhat I have recently plateaud for the last 6 months, and as a result decided to try some lecithin the other day. I have been very excited by the results, I have a marked increase in mental energy, and some physical energy. I am now looking to try TMG, as I know...
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    #MEAction petition: MISLEADING PACE CLAIMS SHOULD BE RETRACTED

    So glad to see the petition reach 10k likes! However I fear it is beginning to stall out. This needs to be just the beginning! Meaction.net and its wonderful people have given us a platform for real change, but its up to us to achieve it. We need to get signatures in whatever way possible, tell...
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    Causes of low ceruloplasmin?

    Hi everyone, In my search to figure out what is wrong with me, I have recently tested low for ceruloplasmin I think it was 13.3 (range 18-30). Three months ago I also had the same test and register 18.2 i.e. borderline. I have slightly low serum copper, and very raised hair copper. My main...
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    Significant improvement with iodine!

    @Sherpa I tried iodine last week. Taking one capsule of kelp daily which apparently supplies 400mcg (could be the wrong units). On the second day I got this really wired feeling and haven't been the same since. Energy is way down. I have a feeling that the iodine overstimulated my adrenals as...