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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. Oberon

    Have You Mixed Covid Vaccines? Please Share Your Experience

    Being in Canada has been interesting in terms of vaccinations to say the least. First we started getting a large supply of Pfizer and a lot less Moderna so a lot of Canadians got Pfizer for their first dose. Then Pfizer had large supply delays and Moderna vastly ramped up their supply so we...
  2. Oberon

    Boswellia Serrata - An Anti-inflammatory Supplement

    @katabasis I'd agree that sounds very potentially autoimmune. When my Crohn's is flaring there is a large increase in joint pain, hip pain along with the abdominal pain. Have you ever trialed any of the first line Crohn's/Colitis treatments, i.e. mesalamine, methotrexate or immuran to see if...
  3. Oberon

    Boswellia Serrata - An Anti-inflammatory Supplement

    @Learner1 All stool tests came back clear for the most part except for Fecal Calprotectin. If I remember correctly I did GI Effects which was completely clear. My Mycotox test had elevated Ochratoxin A and Gilotoxin. One parasite test showed Blastocystis Hominis but it never showed up again on...
  4. Oberon

    Boswellia Serrata - An Anti-inflammatory Supplement

    @katabasis You may very well still have Crohn's even if your Colonoscopies and Endoscopies have all come back normal. I saw multiple GI doctors and had 3 colonoscopies and over the years and they all came back normal. I also had abdominal CT scans which came back clear. I also never had any...
  5. Oberon

    Giving up on methylation.

    It's good that you're getting at least a partially positive reaction. Two things I would try and this is purely theoretical low risk things you can try. Try putting a teaspoon of sugar in a cup of water and see if it helps or having a sugary drink like orange or apple juice. Just a theory but...
  6. Oberon

    Does donut hole deficiency increase potassium loss?

    Not only that, but in Freddd's later postings he discovered he has an extremely rare genetic CBLC disease. I doubt what worked for Freddd will be a miracle cure for other patients unless they have the same rare genetic disease. I'm certain Freddd's advice has helped many, there are many accounts...
  7. Oberon

    Giving up on methylation.

    Having myself gone through an extremely rough time due to trialing methylation by reading too much in to some of the information available on the internet I can tell you with confidence that it will get better if you do nothing and give it time. It may suck for a few weeks to even months but it...
  8. Oberon

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    As a follow up to this I decided to go ahead and let Dr. GIlette only rule out CCI, but it turned out the images were of such bad quality he was unable to do it, even with the correct cuts. For anyone getting scans please ensure you get it from somewhere that has previous experience with other...
  9. Oberon

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Flexion and extension was standard so they knew what to do, but rotation is something according to the technician they have never done before. I assumed myself that rotation was only turning your head left and right and insisted they do it. Unfortunately they only took sagittal cuts for my...
  10. Oberon

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    They are legitimate, I went to one of them in New York. With that said the one I went to screwed up my MRI and did not do the scans as prescribed by Dr. Gilete. They had no idea what to do for the rotation and didn't take the correct scans required so it ended up being a big waste of time and...
  11. Oberon

    Where To Get Upright MRI In U.S.A?

    @toyfoof Thank you :-)
  12. Oberon

    Where To Get Upright MRI In U.S.A?

    Hi Everyone, I was wondering if anyone had success finding an Upright MRI Clinic In the Eastern United States with results that are sufficient for Dr. Gilette to review? I know he recommends Medserena in London, but I'm hoping to find somewhere in the Eastern U.S. to go to. I would be...
  13. Oberon

    Brain fog headaches linked to sinus problems?

    Hi Aquila, Unfortunately I don't have any advice, but I can share my experience. This is one of my worst symptoms by far. The constant pressure and pain at the bridge of my nose and brain fog go hand in hand. Unfortunately, I have tried treating it from a sinus standpoint with no success...
  14. Oberon

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Awesome thank you :-)
  15. Oberon

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi Lesm, Thank you for the quick feedback. I'm also in the Toronto area. That sounds like a really good option thank you for sharing. Which doctor was it that works with 3T Supine results instead of Upright? I can't remember and wouldn't mind avoiding reading through the whole thread again...
  16. Oberon

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Do any Canadians have advice on how to get testing, or know of anywhere in Ontario to get tested? Alternatively, has anyone travelled and can recommend a place? Thank you for your help.
  17. Oberon

    Poll for Vitamin D supplement tolerance and calcitriol levels

    Pre-CFS I was able to tolerate Vitamin D3 without any issues. CFS and on I tried 5 different supplements because I i am deficient in Vitamin D. Every single one gave me a bad reaction and I was convinced I couldn't tolerate Vitamin D in supplemental form. I decided to try a Vegan D3 supplement...
  18. Oberon

    Niagen and methylation?

    Check out this article by Chris Masterjohn: https://chrismasterjohnphd.com/2018/07/26/careful-niacin-nicotinamide-riboside/ He recommends TMG to make up for the methyl groups Niagen depletes. He also suggests not using a lower dose than what the supplement comes as.
  19. Oberon

    Methylation causing hypoglycemia?

    @Eastman may know more about this but: Potassium can deplete thiamine: http://charles_w.tripod.com/kandthiamin.html Thiamine is needed for blood sugar regulation: http://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/ Thiamine is also needed for electrolyte balance...
  20. Oberon

    Poor Methylation Reaction - Tingling Legs, Increased Heart Rate, Depression

    @Learner1 & @Kathevans Thank you for sharing you feedback. It's always interesting to hear how people react very differently to methylation based protocols. I can tell you on my end of things I have been to numerous doctors, including functional MDs, and several naturopaths. I've spent a lot of...
  21. Oberon

    Poor Methylation Reaction - Tingling Legs, Increased Heart Rate, Depression

    Sorry for the delay, I'm not on the forum a whole lot anymore and did not see the messages. To this day I have the below symptoms: Dysphagia and regurgitation Stiff Tingling Muscles Acid Reflux Depression off and on My thyroid did come back clear after some testing and I don't take any opiate...
  22. Oberon

    Treating CFS/ME with TNF-a inhibitors?

    Getting access to TNFa inhibitors is probably very difficult for CFS/ME patients unless they have another diagnosis that calls for them. I'm personally very interested to hear about your results in the next few months. Please keep us updated.
  23. Oberon

    Just out the hospital :(

    Acid Reflux goes hand in hand with air hunger in my experience. I was getting it really badly when I crashed last year and all I could do was suck it up and let it pass. I bought a finger pulse oximeter, primarily to help with the anxiety of feeling like you can't breathe.
  24. Oberon

    Any Idea why Thiamin Can Worsen Muscle Stiffness?

    The thiamine I tried was Bentofiamine, in the past I've tried Coenzymated Sublingual thiamine with the same reaction. I have very funky reactions to electrolyte supplements these days, but I still gave a few of them a go with the below results: Magnesium - Low Dose Mag Oxide (80mg elemental)...
  25. Oberon

    Any Idea why Thiamin Can Worsen Muscle Stiffness?

    Hi Everyone, I was wondering if anyone has any ideas on how Thiamine can worsen muscle stiffness? I've trialed thiamine a few times in the past few weeks and each time it worsens my muscle stiffness. I'm trying to figure out if it could worsening another deficiency. Any ideas?
  26. Oberon

    Glutamine - air hunger

    I don't know the cause but I see shortness of breath is listed as a side effect: https://www.mayoclinic.org/drugs-supplements/glutamine-oral-route/side-effects/drg-20064099 In my pre-cfs days I used to take glutamine without any issues. Now it gives me a terrible migraine every time.
  27. Oberon

    Vitamin B2 (Riboflavin) Effects?

    Also look at No Love of B2: http://forums.phoenixrising.me/index.php?threads/no-love-of-b2-here-a-warning-about-riboflavin.31639/ Not everyone reacts well and if you are prone to depression make sure you start low and work your way up to see how it impacts you. I used to be able to tolerate...
  28. Oberon

    mono update

    Are you able to get access to antivirals? It's probably worth giving them a shot to see if they help.
  29. Oberon

    Low Dose vs High Dose Antivirals

    I was accused multiple times by different doctors of my CFS being psychosomatic too. Eventually I actually went to a Psychiatrist and they told me I don't meet the profile of a psychomatic disorder. It's interesting how quickly doctors jumped to a psychosomatic cause, but the actual psychiatrist...
  30. Oberon

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    Same here, I use to go through 1-2 books a year reading before I had CFS. Now I easily go through 1-2 books a month with Audiobooks. I find audiobooks with the right narrator to be a much more enjoyable experience. I have a large preference for fiction, i.e. fantasy and sci-fi, because it...