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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. jtex

    Labs finally point in the right direction?

    I had neurosurgery to address my real issue, which wasn't ME/CFS. My iron still seems low unless I take supplements daily.
  2. jtex

    Iodine - The Biggest Result I've Had So Far

    An update: With more time and experience, it became clear to me that iodine wasn't helping.
  3. jtex

    Labs finally point in the right direction?

    Good luck!
  4. jtex

    Labs finally point in the right direction?

    My ferritin level was 339 thr week before the infusion.
  5. jtex

    Labs finally point in the right direction?

    I'm assuming Galixie will answer your question but I have a couple thoughts about it. There's nothing dangerous about oral iron AFAIK. It is inconvenient, however, to take much. I don't think I could've gotten an adequate amount of iron orally. In fact, I was taking oral iron bit the anemia got...
  6. jtex

    Labs finally point in the right direction?

    I haven't taken any acetaminophen or other liver-unfriendly drugs in months. I did recently switch to talking high doses of B vitamins. Maybe that's the cause but I don't know. I've started with some liver supersu supplements, and cut back doses of some of the B vitamins. I don't have any idea...
  7. jtex

    Iodine - The Biggest Result I've Had So Far

    @Wishful, do you find that iodine and T2 have the same effect, ou similar effects? I'm thinking about what I should expect when I try T2.
  8. jtex

    Labs finally point in the right direction?

    That's what I needed. I'll print it out and take it to my GP and see what he says. Also printing LabCorp''s criteria for ACD. Thanks!
  9. jtex

    Labs finally point in the right direction?

    I need to find that paper. I was about to take an iron pill lol.
  10. jtex

    Labs finally point in the right direction?

    Wow. You hit the nail on the head with you comment about iron infusions. I just had that conversation with an NP today, and she insisted several times that I'm not anemic because my hemoglobin is normal. Why do most doctors blow off symptoms?? My TIBC was low-normal and ferritin was high-normal...
  11. jtex

    Labs finally point in the right direction?

    I'm finding that, like you said, finding a doctor who does more than exclude me as abnormal is the challenge. I have a lead on one through a friend so fingers crossed he works out. Thanks for the reply!
  12. jtex

    Iodine - The Biggest Result I've Had So Far

    I haven't tried T2 but I will based on your recommendation. If like to know if that, or the other possibilities, are the sectio of iodine that's benefiting me. Thanks for your feedback.
  13. jtex

    Labs finally point in the right direction?

    I also had a lab result that showed plasma iodine in the toxic range, but that's due to reasons covered in this post.
  14. jtex

    Iodine - The Biggest Result I've Had So Far

    Thank you everyone for chiming in and sharing your insights. I've been impressed by the outpouring of help. I have an update on my iodine experiences to share. I did what I said I would, and tried increasing my dose of iodine to 62.5mg/day and then 75mg/day. Within a week, I began experiencing...
  15. jtex

    Labs finally point in the right direction?

    I've been dealing with CFS for 5 years and haven't had any clarity or improvement in the disease. In fact, I keep getting worse and have become unable to work. One of my biggest challenges has been getting doctors to work with me and check for things that aren't common. To work around that, I...
  16. jtex

    Iodine - The Biggest Result I've Had So Far

    That's interesting. I've never been tested for line.
  17. jtex

    Iodine - The Biggest Result I've Had So Far

    Hi Dakota15. IveI used two types: Terry Naturals Tri-Iodine and RLC Labs i-Throid. Both are 12.5 pills of blended iodine and iodide. Tri-Iodine has 3 forms, while the cheaper i-Thrpid just has 7.5mg Potassium Iodide and 5mg Iodine per pill. Once I get through starting a new supplement...
  18. jtex

    Iodine - The Biggest Result I've Had So Far

    I can relate to feeling so bad you don't want to feel that way, so I'm glad the treatment is working for you. A like improvement of one symptom can be very big, and I'm grateful to be improved this week. Thanks for sharing your experiences. I'm definitely not done with iodine, and I'll let you...
  19. jtex

    Iodine - The Biggest Result I've Had So Far

    Wayne, thank you for writing this post and for sharing your thoughts with me! By the way, I hadn't planned to write a post on my phone but I started jotting down thoughts and wanted to "strike while the iron was hot" i.e. take advantage of a few hours without brain fog. It's clear from your...
  20. jtex

    Iodine - The Biggest Result I've Had So Far

    That sounds like a cause to explore. I took my last thyroid hormone test before I got super-low energy, which is the symptom that iodine helps with. That points me in the direction of another thyroid hormone test while off iodine (please don't make me!) to correlate my fatigue with low T3. Thanks!
  21. jtex

    Iodine - The Biggest Result I've Had So Far

    Your experience with iodine and T2 is fascinating. I didn't even know that a T2 hormone existed (shows how much I know about the thyroid) but I'll look into it. Where our results differ is that I'm doing about the same each day on 25-50mg iodine (taken as 1-2 25mg doses) for a period of months...
  22. jtex

    Iodine - The Biggest Result I've Had So Far

    Hi Avena! That's clarifying. I feel like I'm in uncharted waters. Coincidentally, I had a phone consult with Dr. Holladay today and mentioned the iodine effect. He said something to the effect of, if a study was done on 100 patients with CFS to see how they respond to iodine, I'd probably come...
  23. jtex

    Iodine - The Biggest Result I've Had So Far

    I last had those labs run 2 years ago (before the fatigue in chronic fatigue syndrome had fully set in) and they were all normal.
  24. jtex

    Iodine - The Biggest Result I've Had So Far

    Sorry for the typos. Is there a way for me to edit the post? I wrote it on my phone.
  25. jtex

    Iodine - The Biggest Result I've Had So Far

    I've been dealing with varying symptoms of CFS for years. A recent (Skype) visit with a CFS-aware naturopath Dr. inadvertently led to me identifying iodine as a significant treatment for my symptoms. Searching these forums, I don't see much information about iodine's use in treating CFS. I took...
  26. jtex

    Methylation - Tried It All, No Luck?

    I've tried all the ideas I know of to methylate and be functional but I'm stuck. Intro A few years ago, I began experience bronchitis-like symptoms and the symptoms didn't stop for over a year. I spent a lot of time getting treatment and diagnosis from pulmonary, immune, and allergic doctors...