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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. cyrusromeo

    Sleep and the drugs that stop working

    Has anyone tried phenibut?? It's a supplement, liftmode website, and I have slept 12 hours on it. Label warns, use it twice a week or tolerance/ (they don't use the word addiction. Dependence?) it's used by people during the day for social anxiety but I've only taken it at bedtime and I'm...
  2. cyrusromeo

    Sleep and the drugs that stop working

    I have serious issues w sleep. I read a blog recently and was shocked to read 'my story'. I felt fine, but simply stopped sleeping for 9'days. Sleep study, no info never went to sleep. Within weeks, I was, suddenly, so sick I couldn't sit up. For a year. I don't know what is more important than...
  3. cyrusromeo

    Anybody on Seroquel for sleep?

    I was very leery. My husband had been prescribed something like 800 or 1000 mg for bipolar. Trazadone, to me, has minimal side effects beyond lowered blood pressure (seroquell does it too). 150-200 mg has lengthened my sleep, but doesn't get me started. U can start at a very low dose and see how...
  4. cyrusromeo

    What happens *after* completing the gcmaf protocol?

    I have been taking the weekly shots, slowly moving up, since a year ago December. Most notably, I have not had a single cold and they used to immediately become bronchitis. I honestly don't know if I'm better from the gcmaf... Or it's a cycle. Either way, I've written to the nurse to see if 2...
  5. cyrusromeo

    Gcmaf shipment and extended time in heat/transit

    I am on an iPad and don't see the chat option......
  6. cyrusromeo

    Gcmaf shipment and extended time in heat/transit

    I think I can use chat on this... I'm central time. You. It's sent from Belgium to my doc then to me.
  7. cyrusromeo

    Gcmaf shipment and extended time in heat/transit

    Normally, my gcmaf injections are sent overnight. It's my understanding they can be frozen and thawed a limited number of times. So, I know they come d From Belgium, and are then frozen again. To be distributed to me, they are again liquidated and portioned. It's week, mine was sent Tuesday and...
  8. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Just checked; I was taking .25 and I went to .3
  9. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    It's from Dr Enlander and I believe he uses the same source in Belgium. It comes in pre drawn syringes so I can reduce the dose and either throw away or potentially refreeze that little bit. I don't know how many nanograms but I'm glad I didn't go to .7!!
  10. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Jumping in after a while... Wondering if anyone else had an immediate reaction to gcmaf, good or bad? I've been taking .5 for a couple of months, and have been doing better than I have in a year and half, since brutal relapse.. Doc retested blood, suggested I go to .7. I'm wary, talked to a...
  11. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Daffodil, love that you've turned a corner; we all know what that feels like!
  12. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I'm on week 2 of the injectable and beyond some headaches after the first dose (for a few days) I feel pretty good. Is it too soon to be hopeful? Sushi, how soon after starting did you feel improvement? C
  13. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    It's from Dr. Enlander, and I believe it's ml. It goes up from there, to .5 and then 1 ml. Turmeric is curcumin, right? Dosage suggestion? I'm going to order online so if there are other herbal that help, please let me know. I had a few days of migraines but now I don't notice side affects...
  14. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    He's keeping me at that dose for 2 months.
  15. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    .25 And any suggestions on what one takes for inflammation (I'm very sore today!) would be appreciated. I've heard turmeric. Christa
  16. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Sushi, how do you discern between inflammation, herxing and iris!? I've just started the gcmaf, dose yesterday. I know there are things one can take to calm the affects; did you wait to see what happened and then address based on symptoms? Christa
  17. cyrusromeo

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

  18. cyrusromeo

    Started gcmaf; what I've gathered and request for helpful suggestions

    Took my first dose yesterday... Had a nagging migraine last night and today, otherwise I don't know that i'm noticing much. From what I've read, I need to listen to my body in terms of increasing dose, staying with it vs taking a break, etc. What would really help-suggestions on what has worked...
  19. cyrusromeo

    GcMaf questions.. a bit confused

    Question re: having a test shot in a doctor's office. I haven't heard of anyone having a reaction, but if there is, what does a doc do? I'm hoping to start the gcmaf in a few weeks and will go to my regular gp as I can not travel to NY. What bad reaction could there be and what would the doc do...
  20. cyrusromeo

    anyone seen or seeing Dr. Enlander?

    Sushi, if I post the results of the lab work, would you be able to give feedback? I've only heard the Dr. E prescribes low at first, then gradual increase. knowing I need to listen to my body (wish, wish I did with the heparessin shots) I will reach out here for you more experienced folk...
  21. cyrusromeo

    anyone seen or seeing Dr. Enlander?

    Thanks, Sushi, just received my blood test orders today and mentioned your suggestion of benadryl which the nurse agreed could help. Thank goodness for people like you who share things; I wouldn't have learned that otherwise;) How are you doing on it? How long did you take it before getting...
  22. cyrusromeo

    anyone seen or seeing Dr. Enlander?

    I have been a patient of Dr. E for 2.5 years. Wonderful initial visit, very caring and thorough staff. I started the hepapressin shots right away, with the supplements. He said it may get worse before better and a few months later, I crashed for 4 months. Worse than in many years. Then, better...
  23. cyrusromeo

    MAF 878 Available - Anyone already using it?

    And has anyone taken a few days off from it to see how they feel? Christa
  24. cyrusromeo

    MAF 878 Available - Anyone already using it?

    I'm confused as to the relationship/difference between the MAF 878 and injections. I can order the MAF (and have, started 2 weeks ago) but would have to go to NY to have Dr. E give me the first injection in case of reaction. It's been 2 weeks for me, I've been ever so slowly recovering from a...
  25. cyrusromeo

    MAF 878 Available - Anyone already using it?

    Whole milk, all organic if possible. I contacted the office