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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. K

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

    Hi Daff, Thought this link to a mercola article might be helpful... http://articles.mercola.com/sites/articles/archive/2012/03/12/cool-and-less-humid-air-decrease-nasal-congestion.aspx?e_cid=20120312_DNL_art_1 Good luck :) Seeing Dr. E tomorrow!
  2. K

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

    Hi Daff, I had very bad nausea at 50ng. Slight nausea in the a.m. at 20ng dose that went away after eating. This seems to have subsided...took a month or so to go away. Maybe try decreasing your dose until nausea is gone, then try to increase later if you can. I've been on it for 5 mos now...
  3. K

    IRIS reaction, caused by gc maf

    Hi Nabo, How much gcmaf are you taking? I use benedryl on the day I inject and am on high doses of quercitin. I reduced my dose down to 20ng which also seems to help. I tried going up to 30ng b/c it was the end of a vial...mistake for me. Good luck!
  4. K

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

    Hi Nabo, I've been taking gcmaf from Dr. E for 4 months now. I reduced from 50ng to 20ng and know of people doing 10ng. I suggest if you try it again once you find out if you have hidden lyme or co-infections by doing a abx provocation. It was hidden for over a decade with me now my 22yr old...
  5. K

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

    C4a Results my C4a results are finally in from 11/30 draw for quest (Adv Diagnos Lab at Nat'l Jewish Health). 16,144 (ref range: 0-2830). Began GcMAF on week of 10/6. Maybe I'll check again at the end of Jan. Any comments are appreciated, Thx!
  6. K

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

    Nabo, Might you start off lower? There are patients on 10ng/wk. I'm at 20. Also, I take benedryl the day of the inj and lots of quercitin; 900mg 4xday. I also am getting reservatrol in a menapause herbal formula. I had to get a cortisone shot for my shoulder and my lyme doc put me on...
  7. K

    How much Vitamin C do you take?

    I am seeing an alternative doc in addition to my me/cfs and lyme docs. The alt doc has me on buffered vita c powder to bowel tolerance. I can't deal with the belly discomfort to get a flush per se, but have been able to get in 6-10 grams of C a day. I also get a myers cocktail IV that has...
  8. K

    Nexavir

    Thank you Rrrr!
  9. K

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Don't know if this has been posted here yet...not very reassuring. Late-onset Neutropenia Following Rituximab Therapy http://www.medscape.com/viewarticle/754000
  10. K

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

    Here is a link to KDMs presentation for Dr. E & the ME/CFS Center: http://blip.tv/mecfscenter/mt-sinai-me-cfs-conference-dr-eric-schadt-5780099 Apologize if already posted here, but I really just can't keep up :(
  11. K

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

    Sushi, I called a couple of times. They must be absolutely slammed. I think they are mostly testing autistic kids. Hope you get ur results soon!
  12. K

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

    Nagalase Test I finally just got my nagalase testing back from Vitamin Diagnostics from October 13... 1.3 one week after my first GcMAF inj of 50ng. Now on 20ng/wk. I'll update the spreadsheet
  13. K

    anyone seen or seeing Dr. Enlander?

    Dr. E I've been a patient of Dr. Es for years (maybe 10?). I am very grateful to have him as my doc. I travel from NC to NYC to see him. I recently started his GcMAF program. I use the hepa shots, betamax spray, immunoprop, immunoplus and electrolytes. I also do 1/2 cc of 20/mg per cc...
  14. K

    Mount Sinai ME/CFS Center

    That's terrific Nielk! I've been back and forth with Dr. E to get the details down...Thank you for posting!!!! I wish I could go :(
  15. K

    Patient has made a $1M matching grant to the Mt. Sinai ME Center!

    It is my understanding that a patient donated the money for Dr. E to collaborate with Mt. Sinai to create the ME/CFS Center. I think it is made payable to Mt. Sinai, earmarked for Dr. E and the ME/CFS Center. I'll keep my eyes open for donation specifics.
  16. K

    Mount Sinai ME/CFS Center

    that's terrific Morgaine!
  17. K

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    I was wondering if anyone thinks it might be helpful to do a poll on ANA, ACA, NK cell function and B cell levels. I haven't had the ACA tested yet, but ANA pos, NK cell function low normal, B cells low. Too bad we didn't have an Access database to collect datapoints. In my previous life I...
  18. K

    Mount Sinai ME/CFS Center

    ((((Ila Singh relocated to NY to join the center!))))) The Mount Sinai School of Medicine, in collaboration with Dr. Derek Enlander, has launched the Mount Sinai ME/CFS Center. Mt. Sinai, a premier medical facility located in New York City, has hired both Eric Schadt and Ila Singh to...
  19. K

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

    Thanks Lobba. Wow I can't believe your D dropped that much while supplementing. Mine dropped a couple of points when I dropped down to 5,000 IU so I had increased back to 10,000. But now I'm just stopping D until I get tested. Feeling toxic and due for my 5th inj tom.
  20. K

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

    Dr. Enlander patient Dr. Enlander is working with KDM and uses the same source GcMAF. I have had 4 GcMAF injections. Am currently on .20 dose. With an empty stomach I am still getting some queasiness. Also still have increased agitation and insomnia, but much less with the lower dose. I...
  21. K

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

    @ vli, I was going to take a benedryl on day one, but it doesn't really agree with me...makes me agitated and I was already very agitated as it was. If the allergy type symptoms return after my next shot, I may give it a try as long it is not near bedtime. Can't sleep on the stuff. Thanks, Karen
  22. K

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

    Thank you ukxmrv, I'll ask next visit. I took a klonopin and it seemed to help the insomnia last night. Less queasy today. In general, I feel a bit better than yesterday. Karen
  23. K

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

    Hi, I took the plunge and am starting GcMAF with Dr. Enlander. I had my first dose yesterday...feel pretty yucky today. I updated the details on the spreadsheet. If anyone has any advise after looking at my line on the spreadsheet, pls let me know. Any suggestions on dealing with toxic...
  24. K

    Midodrine for Dysautonomia

    Sushi, thanks for getting back to me. So far so good on the midodrine. I also use Dr. Enlander's lectrolytes (immunoprop.com), am heavy handed with the salt (sea salt w/ iodine) and drink a lot of water. I need to do something b/c deconditioning is getting the best of me...what a vicious...
  25. K

    Midodrine for Dysautonomia

    Hi Sushi, Thanks for the heads up. I'll keep an eye out. What dosage were you on? TC, Karen
  26. K

    Midodrine for Dysautonomia

    Just started Midodrine for OI. The extreme heat of late sent me to get help from a cardiologist. My TTT was a decade ago and did pass out when the nitro was given. I haven't had any real pos or neg affects from midodrine other than a mild headache when it wears off. I think I'll ask for...
  27. K

    Spanish CFS patent

    Daffodil, thanks for posting this thread. I have been interested in A1AT deficiency since I found out I have one defective gene (type MZ). A1AT cleaves elastase. My elastase results from VIPdx were over 2000. Elastase cleaves RNaseL. I also express the LMW RNaseL. Although the gene is not...
  28. K

    Comment by 'Klmrav' in 'Show the "FORCE" - XMRV Clothing, Mugs, Bags, Buttons, Stamps, for SOK/CFSAC'

    Here is the latest MCWPA bulletin... CFSAC Dates Have Been Announced! The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11. We previously announced the Speak Up About ME Young Peoples effort initiated by Denise Lopez-Majano and other advocates, here is the link...
  29. K

    WPI Matching Fund 2/27/2011 - 3/31/2011

    Very generous of you Andrew. :innocent2: If you haven't completed it by the 20th, I'll be back to post. Thank you for doing this, it has worked well for the MCWPA in the past.