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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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  1. H

    Link to methylation testing?

    Hi Sasha I suggest you give fed ex a ring once you have the US address and ensure you can get overnight shipping there and a quote - I'm just assuming overnight won't be a problem! From my enquiries Fed ex seemed the only company who would ship blood samples from a person (not a doctors office).
  2. H

    Methylation panel: to diagnose block or to tailor treatment?

    Hi Sasha. Yes it does. Rich kindly interpreted mine. They give information on amino acid levels, essential vit and mineral status, krebs cycle function, sulphur metabolism, and more. Stuff can be inferred about b12 and folate too. The upshot for me was I needed more vit a, e, magnesium, vit b2...
  3. H

    Methylation panel: to diagnose block or to tailor treatment?

    Unless you have loads of cash I probably wouldn't bother - it can tell you if b12 or folate is the more limiting factor ... But if you are sure you have the block it's probably not that helpful. It gave me confidence that I needed to address this area but not much more. I'd have the amino acid...
  4. H

    SMP not working, crashed on Fred's protocol, hard to get test - what next?

    I'm under Dr Myhill and she signed it for me. I try to avoid all contact with any GP ;) I think Rich said a chiropractor could sign it? May be worth a phone call to one near you who might do it if you feel similarly re GPs :)
  5. H

    SMP not working, crashed on Fred's protocol, hard to get test - what next?

    Hi Sasha, re getting the methylation panel blood draw done in the uk - I telephoned a number of private hospitals in my area. One in the Ramsay group were happy to do the draw (I had it signed by a doctor) and they were only 10 miles from my home . I think I paid about 15 quid for the draw. Also...
  6. H

    supplements in pregnancy

    Thanks Freddd and Valentijn. Freddd - I can't find the supplement you mention on iherb - is it available there? I found this on AOR's website re the active B1 in the Advanced B complex: Pregnancy / Nursing Due to lack of studies involving benfotiamine, best to avoid. I googled...
  7. H

    supplements in pregnancy

    Freddd, Lol, hairycat is a good name, but actually Harry was my cat you see... Hmm yes I wasn't too impressed with the b plex formulation myself but it's so tricky to avoid folic acid ... Ok have just scoured iherb and the only b complexes I can see that don't contain folic acid are the...
  8. H

    supplements in pregnancy

    Sorry Freddd, bumping in case you missed my question last post ... really appreciate all your input on this board :)
  9. H

    supplements in pregnancy

    Hi Freddd, Sorry got the wrong end of the stick regarding yeast! Thanks for explaining. Regarding B vitamins, what do you think of this b vitamin supplement biocare b plex It does say not for use in pregnancy, but I was thinking if I split the dosage twice daily it would be ok? Or do...
  10. H

    can you substitute folic acid for folate 1-1?

    Thanks Freddd. That sounds rather more complicated than I imagined... Not sure what I should suggest to my mum in terms of replacing her 5mg folic acid if her doctor won't help. My mum's main symptoms are swelling of her knuckle and ankle joints and severe pain at times limiting movement but...
  11. H

    supplements in pregnancy

    Thanks so much for this Freddd it really gives me a good starting point. With what u say about keeping iron and vit e separate I will certainly avoid the prenatals. I wanted to ask a few things please... You mentioned yeast supplements for your wife- what were these please? I thought I would...
  12. H

    can you substitute folic acid for folate 1-1?

    Hi, My mum has rheumatoid arthritis and I'm trying to help her get on the methylation protocol. She takes methotrexate with which they prescribe folic acid (not folate), in 5 mg daily doses as methotrexate can deplete folate. I have the MTHFR polymorphism (+/-) so I want to assume my mum has...
  13. H

    supplements in pregnancy

    Hi, I've been following Rich's protocol with some variations for over 6 months now. I'm now trying to get pregnant and I wonder what supplements I can keep on taking... I was looking at thorne basic prenatal which contains some folate / folinic (1000mcg - I currently take a similar...
  14. H

    B12 injections - how regularly do people inject

    Hi Freddd, welcome back it is great to have your input again :) In your opinion are there any dangers in taking higher levels of b12? I'm also on the 500mcg mb12 SC injection prescribed by my doctor and curious about increasing it. The 3mg you say for a good level of healing - do you have a...
  15. H

    Acetaminophen, Asthma and Glutathione

    This is interesting. I wanted to ask Rich my own question regarding b12 and asthma. After my 3rd mb12 injection (500mcgs) I developed a wheeze within a couple of minutes- I do have asthma. This has happened the last couple of times I injected even though I cut my dose to 250mcgs less often. It's...
  16. H

    tip for anyone doing chelation and having a hard time

    This is interesting thanks :) its good to know strategies when the detox leaves you feeling rubbish. I wonder what are 'liver symptoms' as I've heard people talk of this before and never known what it is exactly? Thankyou.
  17. H

    transdermal minerals

    Hi, Because of my gut problems (yeast, streptococcus and klebsiella pneumonaie), Dr Myhill has recommended I take transdermal micronutrients. She thinks the stuff I take orally could be feeding the 'bad bugs' which makes sense. She recently started making a new preparation which has a mix of...
  18. H

    feel really bad @3 months? keep on?

    Hi Suzanne, I don't know if I can offer much but I wondered if you have tried using hydroxy b12 as per the Simplified Protocol? I started with this and got a positive response from the start (though detox lately). I know Rich says something about hydroxy b12 being the form the cells can use in...
  19. H

    App with KDM

    Hello I wondered how you go about getting an appointment with Dr De Meirleir and what type of fees I'd be looking at? Thanks.
  20. H

    Glutathione, raw food and rest

    I take the liposomal glutathione I've taken about 20 sachets so far and I have to say I don't notice any effects good or bad from them. My glutathione is low so was hoping for better response:(
  21. H

    Diagnostechs GI panel results

    It was a stool only sample sent via post. Thanks for your help.
  22. H

    Diagnostechs GI panel results

    Hello I just got my results and wondered if people could give me any feedback - Bacterial stool culture Moderate mixed gram positive rods / flora Moderate mixed gram negative rods / flora - these two were down as normal - normal being moderate or abundant of each of these. Commensal /...
  23. H

    Normal B12 lab results

    Thanks for that info April makes me feel less worried about overdoing b12! Is it the folate that can overdrive methylation rather than b12 then? Was looking at the GET b12 spray on holistic health website which contains both hydroxy and adenosyl b12 forms - the oral spray formula intrigued me...
  24. H

    colonic irrigation

    hi i was wondering if anyone has views on the merits of colonic irrigation for people when on the methylation protocol. I tried colonics twice before this protocol and felt a bit better after them... in terms of energy. I read some stuff after that scared me about the fact that you are...
  25. H

    candida and candex

    Hi Suzanne. Sorry I can't be much help to you in terms of the candex, I have never tried it. It would be great if you could update the thread with your progress though. Are you on any methylation protocol? My Tongue coating has improved since starting in June this year and soreness down below...
  26. H

    CytoFlora

    Hi. Has anyone tried with CFS this probiotic? apparently it's had some success in autism. Thanks.
  27. H

    List of ME/CFS abnormalities explainable by the GD-MCB hypothesis

    Fla - I gave up with my GP in England a long time ago. If I'd listened to their advice I'd still be on painkillers, antidepressants and learning to live with it. I hope there are some other folk who have more positive experiences but my view on the NHS treating people with FMS / CFS is that they...
  28. H

    Not Just H2S: Now Adenosine Has Been Shown to Induce Hibernation in Animals

    Any ideas what we can do about high adenosine nutritionally? Rich thinks that fixing methylation will do it, but any short term helpful things? I am a real coffee lover so I found this link with caffeine intriguing.
  29. H

    Mb12 made me feel angry

    Oops I think this might be the / an answer if anger is an excitotoxic symptom! Found this on the b12 post: Hi, retireddpm. I think this is due to an increase in the excitotoxicity of the neurons that have NMDA glutamate receptors. When methionine synthase is first stimulated using B12 and...
  30. H

    Mb12 made me feel angry

    I tried a 1 mg tablet of the enzymatic therapy brand mb12 today for the first time. It was an experiment really as im seeing improvements on the hydroxyb12 drops. I did get the feeling that my tmj trigger points were responding more positively to the mb12 compared to hb12. However I felt bleak...