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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. IntuneJune

    Some inforamtion on titrated mb12-Metafolin-potassium ratios and startup

    I was reading another thread and wrote the post below....when I went to post, I was not allowed stating I was not signed in (anymore). Captured it with "Control C" and then spent time trying to find the thread and could not!!!! Frustrated, I am posting it here as it also included mB12 info as...
  2. IntuneJune

    Primary immune deficiency.......anyone?

    CVID and throid issues Stellar, this is very common; many, many primary immune folks develop thyroid issues and other autoimmune problems. This past weekend, I went to a regional conference for PIDD and thryoid diseases were discussed. Sigh, we get it "coming and going." Does your...
  3. IntuneJune

    Primary immune deficiency.......anyone?

    Ohhhhhh!!!!! I wonder if the viral proflie differs from the autoimmune?
  4. IntuneJune

    Primary immune deficiency.......anyone?

    Wally, Thank you for the links. I have followed folks here (some time ago) who have had office visits with these physicians, but cannot remember their outcomes I will visit their sites. It might be that because of an immune deficiency, a virus was able to get a good hold and...
  5. IntuneJune

    Primary immune deficiency.......anyone?

    IreneF One of the most respected pediatric immunologist's, Dr Bonilla, spoke at an IDF meeting and was asked this question. Are immune deficiencies inherited? He replied there was no data to support this. I was sitting at a table with a Mom whose children had an ID, she has, and her father...
  6. IntuneJune

    Primary immune deficiency.......anyone?

    DaiWelsh Here in the US, when a patient receives a dx of CVID, they are treated with immunoglobuins......this prevents or drastically reduces serious infections. I do know of one person who refused treatment concerned about receiving a plasma product. The subclasses should be included in your...
  7. IntuneJune

    Primary immune deficiency.......anyone?

    Rituxan IreneF Yes, you are quite right,CFS as a diagnosis is the kiss of death resulting in treatments that are not of much help. There are so many primary immune deficiencies and over the years, I have gone from a subclass deficienty to common variable. The treatment however was the...
  8. IntuneJune

    Primary immune deficiency.......anyone?

    Jenny: I am not good at interpreting lab results but can tell you my CD4 and CD8 and their ratios are not normal and this is an indication of an autoimmune problem. June
  9. IntuneJune

    Primary immune deficiency.......anyone?

    IreneF I am only familiar with CVID being treated with immunoglobulins. When I get a chance, I am going to look into Rituxan. How long have you been on treatment and are you feeling better? As far as what you posted making sense, I find the whole darn immune system very confusing. It...
  10. IntuneJune

    Primary immune deficiency.......anyone?

    Rooney, yes, to be tested to see how well YOUR immune system is working (or not) one must be off treatment for months, possibly six. Are you seeing an immunologist? In my State, many patients are treated by allergists, oncologists, or pulmonologists. I travel to Boston, MA to be seen by...
  11. IntuneJune

    Primary immune deficiency.......anyone?

    Satoshikasumi, thank you again. As I was started on immunoglobulin therapy to augment my immune system, the treatment is considered a success as it has kept me out of the hospital with serious infections. Every infusion is considered temporary as overtime the replacement is depleted...
  12. IntuneJune

    Primary immune deficiency.......anyone?

    Thank you Thank you Ember, I will go take a look. June
  13. IntuneJune

    Primary immune deficiency.......anyone?

    Jenny, thanks again for your reply. I actually answered a question you asked in a post back in the Fall of 2011 just a few hours ago. I am thinking also there is a link. CFS, FMS, autism, primary immune deficiencies, mitochronial disease have so much overlapping. Satoshikasumi, I...
  14. IntuneJune

    CFS,mitochondrial diease, autism

    Jenny, is it too late to reply??? I have common variable immune deficiency diagnosed by blood work, total IgG, IgG IgA, IgM, subclasses 1,2,3,4. I see an immunologist in Boston. I am on Hizentra, a subq infusion, that I can do myself at home. Cannot say my symptoms are any better, the fibro...
  15. IntuneJune

    Primary immune deficiency.......anyone?

    Well, it has been awhile since I have been here and am having trouble finding my way around...again. A number of years ago, I was diagnosed with a primary immune deficiency, CVID, and started on IVIG. Almost a year and a half ago, I switched to subq Hizentra at home, much more comfortable...
  16. IntuneJune

    CFS,mitochondrial diease, autism

    Fascinating thread. Mitochondrial disease Fascinating thread. I have not been on much lately, not because my situation has imrpoved, to the contrary, I have developed a "primary immune dificiency" and have been on support boards for that. I have been very suspicious of mitochrondial...
  17. IntuneJune

    Does Chronic Fatigue Syndrome Deserve a Better Name? -- Boston Globe article

    Voting Thank you Laurel, I just voted now. June PS Took the opportunity to watch your video again, it is powerful.
  18. IntuneJune

    Royal Free 'Fatigue' clinic, London

    Immune deficiencies Jenny, I have never heard of mannose-binding lectin. However, I do have a primary immune deficiency. Diagnosed at age 30 with fibromyalgia and CFS, I was not diagnosed with an immune deficiency until age 62. The tests are IgG (total), IgE, IgM, IgA, IgG subclasses 1,2,3...
  19. IntuneJune

    XMRV positive vindication!

    Do we say welcome since you have been here 2 1/2 years? Glad you posted!! I admire folks who can forgive others... for the most serious infractions. When I was younger, I did not understand the statement "To forgive is a gift to yourself." Now that I am MUCH older, and maybe a tiny bit...
  20. IntuneJune

    Calling on Christ

    I have been sick for almost a week, and getting worse, on Avelox, not doing better, in fact worse. This post was a gift today Andrew. Calling the doctor's office was a major doing as the one who prescribed the Avelox is not in today. I could not raise to the occasion of deciding who to call...
  21. IntuneJune

    My new compression stockings-question for ya

    I had a hard time with compression stockings, I was measured....the waist high were too hard for me to get on, it threw my back into spasms. So thigh highs were tried. I looked rediculous in them, muffin top thighs bulging out very noticeable through my slacks, would have put up with that but...
  22. IntuneJune

    Re-occuring flu symptoms

    I frequently feel I have the flu without having the flu. These symptoms were improved with better allergen control. But still there at times. June
  23. IntuneJune

    Dr Myhill wins back her licence to practise

    Great news! Hats off to Dr. Myhill and supporters! June
  24. IntuneJune

    I do better in the cold!

    We live in New England, so of course, it is cold here. Oil is expensive, for the past 40 years, we have kept our house at 65 during the day during the heating season. I have never been comfortable during the summer. But, really I don't know why. If I am at the ocean, I am better...
  25. IntuneJune

    Sleep behavourial problems

    Wow! Time for a sleep study? June
  26. IntuneJune

    Immunodeficiency clinic of Mt Sinai

    Pidd There are many different types of PIDD. My lab values, CVID, would be different from another type of deficiency, but yet the treatment may be the same. Insurance companies deny treatment if they can because it is so expensive. I was on IVIGs for sometime, when my insurance was changed...
  27. IntuneJune

    Immunodeficiency clinic of Mt Sinai

    undcvr - PIDD As stated before, usually physicians do not test for primary immune deficiencies, just not standard testing. However, you have had testing, with low IgM levels. Was further testing done? Subclasses? I would think it would be significant your IgM is low. I have CVID, a...
  28. IntuneJune

    Article: VOTE NOW: Phoenix Rising asks Turnips to support the forums and other ME/CFS organisations

    Repost on your facebook page I posted this again on my FB page....a reminder for folks to vote if they had not!!! June