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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. Mogwai

    Anybody found green tea beneficial - does it vasodilate or vasoconstrict?

    It suppressed my thyroid function as well.
  2. Mogwai

    Carnitine Fumarate and hypothyroidism

    I haven't tried Carnitine Fumarate, but I didn't fare well on Acetyl L-Carnitine. My low thyroid symptoms got a great deal worse on it.
  3. Mogwai

    Carnitine + lipoic acid

    I took 500mg daily of Acetyl L-Carnitine for a week or so, before I realised it was completely messing with my thyroid! I still have no idea why my thyroid is underactive, but I wish I had read the below before buying ALC: http://cfstreatment.blogspot.co.nz/p/supplements.html CONS. Carnitine...
  4. Mogwai

    Unfolded Protein Response and A Possible Treatment for CFS

    I've yet to try the choline bitartrate, as my POTS flared up these last few weeks! Could have been from a lack of choline... http://www.ncbi.nlm.nih.gov/pubmed/25466896 I'm feeling a bit better after getting on top of my electrolytes - so I'm going to try a few things. Updating my SNPs: ER...
  5. Mogwai

    what has been your most bizarre symptom/symptoms?

    - Exploding head syndrome. Thankfully that was only for a few nights. - My whole body vibrating like a mobile phone - sound included. Again, just for a few nights. - When I'm standing, I often get the sensation my left leg is sinking into the floor. This actually feels pretty cool! I'm so use...
  6. Mogwai

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali I received the Choline Bitartate last week, but haven't started on it yet. I've been talking a multi-vit/mineral for a very short time - which I am tolerating well. I will introduce the CB in a week or two.
  7. Mogwai

    In Memory of Spindrift

    Damn this illness! :cry: Sp!ndrift was an absolute delight - may she rest in peace.
  8. Mogwai

    Dr Les Simpson...Able to Identify CFS by Blood Cell Shape

    I sent a vile of my blood to him way back when in '01. Same day shipping - Auckland to Dunedin. It showed a high value for flat cells - 75.6%. Average male is at 44.2% - from a NZ study. I knew a woman whose flat cells were in the mid 80s. Average female from the study is at 43.6%. She was...
  9. Mogwai

    How do you experience colds?

    Much the same as Sarah above - I get a worsening of my usual ME symptoms when colds/the flu/bugs do the rounds. Most recently my brother got a nasty chest infection - he was coughing up a storm and needed antibiotics. I'm just getting over it now - with immense brain fog being at the forefront...
  10. Mogwai

    High B12 levels with elevated homocysteine

    I'm just taking hydroxy B12 - 1000mcg in the morning, and magnesium malate nightly, at the moment. I'm trying to re-introduce a B complex into the mix, then choline bitartrate. Tolerating anything, outside of B12 and magnesium, has proved difficult. Always has... I'm sorry I'm not much help!
  11. Mogwai

    Supplements do not have any real effect on symptoms

    I can't sleep without my magnesium malate. B12 also helps, and always has. I've had a few good flings with some other supplements, but the love affair has always ended rather abruptly. Trying to rekindle the love we once had always ends up in tears... Still, I will continue to try things here...
  12. Mogwai

    High B12 levels with elevated homocysteine

    I'm high in all three as well. Here's what Rich had to say on the matter: In chronic fatigue syndrome (CFS), it is common to see elevated B12 and folate in the blood serum, but this type of measurement is misleading in this disorder, because there is a functional deficiency of B12 in the...
  13. Mogwai

    Unfolded Protein Response and A Possible Treatment for CFS

    I can't tolerate egg white protein powder at all - so it's a definite problem with me! I do OK with 2-3 eggs a day, tho. And thanks!
  14. Mogwai

    Unfolded Protein Response and A Possible Treatment for CFS

    Thanks - will give CB a go then, and report back how I get on. I'll start in a week or so - have to order it from overseas with my usual stuff first. I haven't had a liver panel for a while - but it's been fine in the past. I'm seeing my Doc next week anyway - so will add it to my bloods...
  15. Mogwai

    Unfolded Protein Response and A Possible Treatment for CFS

    Interesting thread this one... which I'm slowly working my way through! There's a fair amount of things I don't tolerate on your "STAY AWAY From" list. I took accutane when I was younger - but I didn't get sick until 7 or so years after I'd stopped taking it. Rich did note that a fair few...
  16. Mogwai

    Doctors, treatments and facilities in New Zealand? - Thinking of moving there...

    He was very handy for me. I got thorough blood and stool work from him - including a CSA/Parasitology from Doctor's Data. He Rx me B12 shots and magnesium shots. We also tried Natural desiccated thyroid. He treats high nagalase with GcMAF, and is willing to Rx immunovir. From my experience...
  17. Mogwai

    Tumeric or NAC Making it Worse?

    According to Yasko, when talking about her new multi - "All in One has no iron, as iron drives bacterial virulence". As for testing? Just the big boys - HHV6 (negative); EBV (positive); Toxoplasma (positive). I also had a positive ANA last time I checked it - Titre was low, at 80. I didn't...
  18. Mogwai

    Tumeric or NAC Making it Worse?

    I also have haemochromatosis, which is an iron overload disorder. I'm largely housebound, so have to look to other options (for now), rather than phlebotomies, to keep my iron down. I simply can't make the trip to the hospital at the moment. Curcumin has reported iron chelating properties - so...
  19. Mogwai

    Tumeric or NAC Making it Worse?

    Turmeric does chelate iron - in fact that's the main reason why I take it!
  20. Mogwai

    New Zealand CFS patients to get psychologists and physiotherapists from health board

    I read this last night. Then couldn't sleep. I felt immensely angered and disheartened by it. Just the other week, with no prompting by me at all, my Aunty brought up the Stanford study. I was really encouraged by our short conversation. But now this shit has been dumped on my doorstep...
  21. Mogwai

    We Are Death, Warmed Up - Blog by Paul Tomkins

    I would do anything to play football again, Paul... I do still kick a ball around inside my room - but I can't even keep up with my 1 year old niece, whom walks about like a drunken cowboy. Anyway, I've been a Liverpool FC fan for over 30 years and have always enjoyed your work. Thanks for...
  22. Mogwai

    The Concealed Causes of "Thyroid Resistance"

    @drob31 A very timely piece, thank you.
  23. Mogwai

    Yikes! I SMELL SMOKE!

    For the last few days I've been experiencing this on and off... I'm going to make sure there is nobody next door puffing away, before I add this to my wonderful array of bizarre symptoms.
  24. Mogwai

    propax with NT factor

    @fibrodude84 http://chriskresser.com/folate-vs-folic-acid
  25. Mogwai

    Cherry angionomas-----Bromism

    Here's my post, almost a year ago now (damn!), about my experience with iodine and bromine: http://forums.phoenixrising.me/index.php?threads/high-iodine-supplementation-iodoral-lugols.25014/#post-382599 Here's a blog that you may find interesting...
  26. Mogwai

    Sugar-free MethylB12 tablets?

    You can get the Country Life 5mg B-12 on iherb: http://www.iherb.com/Country-Life-Gluten-Free-Methyl-B12-Cherry-Flavor-5000-mcg-60-Lozenges/51092#p=1&oos=1&disc=0&lc=en-US&w=country%20life%20b12&rc=1457&sr=null&ic=4
  27. Mogwai

    Resistant Starch--discussion of benefits/adverse effects only

    Thanks for your input. I bought the Thorne LAG when I bought the PS from iherb. Damn expensive stuff - but shipping from iherb is so fast and cheap, I thought I'd chuck it in with my usual bulk lot to give it a crack. I think I'll start at 1.5g. When is the best time of the day to take it? Do...
  28. Mogwai

    Resistant Starch--discussion of benefits/adverse effects only

    Reading through this thread, I think I should have given LAG a go before PS... I did not cope at all well with the latter - basically lived in the bathroom. That was on 1tsp as well. I love my potatoes, and tolerate them well, so was surprised to get such a reaction from PS.
  29. Mogwai

    Where Can I get Hydroxocobalamin without a prescription?

    Have you tried the vet hydroxy b12 yourself @heapsreal ? Looking at sources here in NZ, but I can't find anyone that delivers...
  30. Mogwai

    FUT2 genetics

    @Valentijn Thorough as ever. Thank you.