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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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Search results

  1. S

    Role of EBV in autoimmune thyroid diseases

    Hi there. Have you gotten EBV fully negative and in remission. What are your top choices for targeting the EBV to reduce viral load?
  2. S

    NK Cells(Naural Killer Cells)

    Would you direct me to the group. I don’t see an area for groups on this forum. Thanks
  3. S

    Cytomegalovirus Treatment Options

    CMV Cytomegalovirus. Has Anyone had success reducing Titers/Load ? If so what treatments worked ? Valcyte worked perfectly for HHV6 but didn’t work for CMV. Looking for Alternatives. Artesunate is on my list to try. Anyone with ideas and suggestions appreciated.
  4. S

    Micro-immunotherapy for ME

    I have used labolife micro immune treatments. They are okay and felt them for a little while help in a big viral flare. But nothing I would say wow over.
  5. S

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Exactly I at least have my immunologist and neurologist identify this as an Immune Deficiency. Yet the treatments for Functional NK Deficiency and even Cellular NK Deficiency is IVIG and Anti Virals. Babies born with this from genetic cause .. It is genetic are only offered these. If a viral...
  6. S

    Finally! A good local doc and IVIG

    Would you pm me ascwell. I’m in Scottsdale AZ. Thank you much.
  7. S

    4ME - pain after application

    Sorry this didn’t work out. You may have been able to work up to dose of give mini doses to desensitize yourself maybe.
  8. S

    Neutrophil and lymphocyte levels consistently changing. Is this normal?

    Do you know why this is expected ? My lymphocytes have dropped and particularly B cells and have gone way down to below normal and wondering if it’s a temporary good sign or a concern. Both abs and % in low range.
  9. S

    Any experience exercise (aerobic) vs lifting

    What advise do you have as far as how to take and reactions and benefits etc of Mestinon ?
  10. S

    Dosage of Cycloferon

    Thank you ! Wow that’s quite a jump for sure! How about now ? You normalized ? My test is this one. I would love to see it change.
  11. S

    Dosage of Cycloferon

    “ All my tests were very low except one test where i took cycloferon but not to the researchers knowledge, naughty boy, but i wanted to know if cycloferon does effect nk function. The test on cycloferon showed a large increase in my nk function but my nk bright cell function had notchanged...
  12. S

    Bond University study results - looking at NK Cell function. My results.

    Is this the list of NK Function Stimulation therapies people have used or any other ideas to add ?
  13. S

    Valcyte Mechanism

    Thank you so much. This is what I’m looking for. Thank you for the Interferon lead. I have researched the Russian meds before used in Hep C and this is one. So glad to hear it’s increased your NK function. Did you have to stay on it to keep up the increased functioning ongoing ? Thank you so...
  14. S

    Valcyte Mechanism

    Has anyone researched ganciclovir / valcyte mechansism? It indeed is supposed to suppress replication but why do people have symptoms re-emerge ? I read a nurses theory that states the drug is taken up by the cells and does inhibit replication but at same time there are virons chased out. Then...
  15. S

    Poll. What is your NK Function LU result if you tested.

    Has anyone tracked this with follow up tests? I read that this can be genetic deficiency and I am curious how much we can expect a shift in Functioning? I am sure we might get slightly different t results no matter what depending on day we test. Has anyone had a actual shift upward that would...
  16. S

    Poll. What is your NK Function LU result if you tested.

    Poll. What is your NK Function LU result if you tested. Decreased activity <7 LU Normal activity 7-125 LU Increased activity > 125 LU My result is 3 I knew it was going to be not great But I didn’t expect to see this. Found an evaluation of ME / CFIDS patients by severity. ““Those...
  17. S

    4ME - pain after application

    Hi Martin You are told by them that the protocol is 2ml every day 7 days a week ? Did you find out if 2ml is equivelant to 1ml of old nexovir -kutapressin - hepapressin injections of liver bovine? Hope they answer your questions on the injection redness/pain. Your probably correct that it’s...
  18. S

    Valcyte - what to expect ?

    Thank for your report. So how long have you been on valcyte and are you saying you go up and down between 900-1800 a day and feel better on 1800. I’m about to reduce to 900 from 1800 and I sure hope I don’t regress backwards again. Have you monitored viral levels with your improvement and...
  19. S

    4ME - pain after application

    Where do you inject ? I use hepapressin and never have any trouble and inject into Glut or Thigh. I Make sure to inject slowly. Where do you buy your 4ME. Is that available for public to purchase ?
  20. S

    Who else has had stem cell therapy?

    @Santino What cell clinic are you considering for M Cell therapy? I saw your post and last sentences. I’ve been exactly at that door of thinking of last effort. Hugs. Your not alone. PM me anytime if you would like to chat. Blessings are prayers.
  21. S

    Valcyte - what to expect ?

    Thsnk you Valcyte!! Amazing response after just one week of 900 mg 2x a day. Tolerating it easily to boot ! Finally chains are releasing from my organs and spine! Thank you all for helping with my questions and what to expect possibly etc. Taking Mushroom Liquid Extract and GCMAF and...
  22. S

    NK Cell Function Test and Medicare

    Is this information available for current people. Labcorp NK cells Function Asday. Anyone know CPT code. Used as of 2018. My lab missed it totally. .
  23. S

    HHV-6 Quest Test

    Has quest changed reference ranges I see someone with recent test Listed 1:10 as normal IGG range result is 1:40. My quest range was less than 1:80
  24. S

    Valcyte - what to expect ?

    “You can readily see the numbers rise the more you take and how long you take it.” Thank you for your response. I am not sure what this part means quoted above. ? I am about 1 week in with 2x900 a day and I am seeing huge improvement already. I don’t barely have any side effects. Little...
  25. S

    Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

    @Wonkmonk Thanks. I will keep asking including various docs. Some blow it off sadly. Yes ebv is high IGM is positive and all four titers are actually. Thanks again.
  26. S

    Valcyte - what to expect ?

    @Learner1 Thanks for the response. Yes still on ivig. And I have function and ND help too. Luckily we have my liver doing well. The hepapressin helps and herbs and glut and liver cellular peptides etc. Have myth supports going too. I do Ozone therapy too gosh I’m trying. A German doc loves...
  27. S

    Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

    @Wonkmonk What is your take on mycoplasma and chlamydia pneumonia tests ? I don’t know how to intretpret these Mycoplasma P IGG 2.39 Greater or equal 1.1 Postive Chlamydia P 1:64 Greater that 1:16 Positive Strepyzyme reflexed 1:200 Positive Less than 1:100 negative HHV6 IGG 1:1280 Less than...
  28. S

    Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

    Interesting thread. On my list of infections so many high viruses and strepozyme says positive and is 200 when less than 100 is negative. Nobody says a word about that and seems to be a side note. Before cfids really hit hard years ago I had chronic strep throat for a good year even...