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

CindyWillis

Senior Member
Messages
116
Q-"I do not mean to be rude *at all*, but I am wondering how it is even possible to take, for months on end, 350 supplements, and 42 injections per week?! To eat four POUNDS of chocolate? Bench press nearly 400lbs? Work 110 hrs per week? (Before illness I worked occasional spurts of 84 hour weeks from a baseline week of 60+ and that was exhausting and demoralising beyond measure. I know we are all different, though.)
I guess the thing I'm trying to say is, there seems to be a theme of "excess' here that is of note not just in your pre-illness life, but in your treatment protocol, and in your lifestyle during recovery. With all respect, I wonder how it is possible to do the things you report, from the sheer volume of treatments to the work schedule just 4 weeks into the GcMAF. Is it prudent to push so hard before (or even soon after) full recovery?"

A-I only included those items since my family and I are different than most people since we possess a very high amount of energy and I think that is important to know in considering me. My father is 76 and works 60 hours a week on his farm in the summer and 45 in the winter. My brother averages 85 hours a week (of course unbelievable but true) He is both the VP of a software design company and has 65 families that rent from him and he and his wife renovate the houses and do the repairs themselves. This is extremely odd but true. We were born with an extremely high amount of energy and a very fast metabolism. Before my illness I ate 5-7 meals a day and worked between 68-76 hours as a yearly average recorded by company's timesheets. My company keeps track of the average every two weeks so I know what my hours are. I had back to back trials and logged 430 for the month which I guess is 10 hours short of 110 a week but pretty close. My husband is 46 years old and benches 390 several times a week before he got sick and exercised 3.5-4.5 miles a day on the treadmill or the eliptical machine. He is also a doctor and a lawyer (unbelievable also). My husband can work a 30 hour shift at the hospital with a 103 fever and has done so before. He has never taken a sick day in the 10 years we have been married. The ONLY reason I included this information is that my husband and I are different from most people so that is information if I were you I would want to know since it is easier for someone who used to average 70+ hours a week to average 50+ then it is for someone who does 40 hours a week to now start doing 50+ hours a week. My husband and I are different, so medically, I think that matters. If this seems impossible, just remember that all people are different, they are on a normal curve and some are at each end and some are in the middle. By the way, I actually walked to the kitchen and counted the candy bars that were left and mulitplied them by the ounces since they were all the same size. I am a person of excess. When I focus on something, I do it exclusively. I did no different with my illness. I have spent over 400 hours researching each doctor and what results their patents were getting, each medicine for interactions and side effects, each new treatment that comes available for results and side effects and feel that I have come up with the best combination of things that work to get me as well as soon as possible along with an enormous amount of gratitude to everyone who has provided information along the way and help and guidance. This doesn't mean that what I do it right for everyone, it just means that I have thought of only one thing since I got sick and that was getting well and every ounce of energy has gone to that. Right or wrong, is a different debate but I love my life and wouldn't trade it for another's life. I like to take something to its extreme and then I feel I have experienced it throughly. My neighbors tell us we need to do differently, I tell them that I do what I enjoy doing and expect them to do the same.

By the way, I am only on my third treatment of GcMAF and was already working full time for 5 months before I started it. Dr. Sharp recommended that I start work 4 weeks after his treatment but I started much earlier which I regretted. For the first week it was 4 hour and the second it was 6 hours but the third was 55 hours and since then I range between 45-60 depending on what is going on. Yes. It is very hard. This year has been the hardest of my life. Even taking these treatments are hard to juggle with full time work but I just do it since I feel I have to. I spend two hours a day taking shots and medicine and 10 hours sleeping and an hour getting ready for work and 10 hours to go to work, work and come back and one hour with my husband in the evening. I was also lucky that my husband had the same illness 4 months before I did after getting the swine flu and that my brother and sister in law caught the swine flu a week before I did and had the same illness thereafter and that my husband knew enough to tell me to stay away from normal doctors other than testing to rule out other illnesses. I went to a specialist first that specialized in chronic fatigue after the tests were run ruling out everything else. I do not post this information because I want to post it. The opposite is true. I have never posted anything on-line and never have chatted until I started to get well and started posting that following Dr. Cheney and Dr. Sharp got me well since I wanted to help others. I hate sharing personal information with others I do not know but force myself to give details to help others.
 

CindyWillis

Senior Member
Messages
116
"I just realized that you, your husband, your brother, and sister-in-law all got sick around the same time. Whatever you got it sounds like an acute infectious outbreak. "

Yes. My husband got the swine flu in Sept 09 from the hospital. My brother got it a week ahead of my sister in law before Thanksgiving and then I got it from my sister in law at Thanksgiving. We all got chronic fatigue that lasted for months following the swine flu by a few days except for another brother that got the swine flu and never got chronic fatigue. He and his family just got the swine flu and that was that. The swine flu made me sicker than I had ever been but was nothing compared to the months of fatigue and pain that followed it and still plagues me when I overdo it. I am hoping that will all go away with this new medicine and continuing the old medicine but we will see. I am only on the third shot so I do not know any more than that the first three shots have been extremely helpful.
 

CindyWillis

Senior Member
Messages
116
Q- "If you were tested would you mind sharing your results?

It sounds like you would have the best results on the VDR test--at least from your response from GcMAF.

I just got my VDR results from Belgium and they were: Fok 1 -- low responder, and Bsm 1 -- moderate to low responder. This is certainly disappointing!

I think I'll start a thread just for this test as a number of people are taking it.

Also, does Dr. Sharp give GcMAF weekly and as an IV injection, or does he give it IM. Dr. De Meirleir seems to advise about 10 weeks of IV injections and then switches to IM."


A-You would want to check with your doctor but I followed a back door method that I was asked not to talk about (not from Dr. Sharp or Dr. Cheney) to know if GcMAF would work for me. After two weeks of trying the back door method, we determined that it would work well for me. Dr. Sharp does weekly doses and may be following Dr. Cheney's instructions which are different than Dr. De Meirleir. All is new and changing so could be different soon.
 

CindyWillis

Senior Member
Messages
116
Q-"Thanks for posting, and congrats on your recovery.

With all respect as well, I'm curious how long you were disabled from work for? Was it from November 2009 til March/April 2010? Was it due to the postexertional malaise or something else, meaning what were your worst symptoms? I ask because I read in another one of your posts that magnesium and taurine shots basically cured you of your PEM, and that's the first time I've heard of that for any CFS patient, so hence I wanted to make sure we're talking about the same PEM here.

I'm glad you found Dr. Sharp as early as you did after onset. I'm sure that boosted you and your husbands' shots at recovery tremendously."


A-I was unable to work at the office from the end of February until the beginning of June. I still worked as much as I could from home (4-8 hours depending on the time frame) but that was all I could do with a lot of pacing myself on the sofa and someone at the house doing absolutely everything else. I got up (one shower each week or 10 days was all I had the energy for) and took my medicine and went back to sleep and then worked at my computer and then rested and then worked and rested etc. There was a lot of pain involved.

I think it got worse from Nov - February since I was taking antibotics every other week which worked well while I took them but I was very sick when they wore off. I was also drinking 3-6 mountain dews a day to get through the day at work when I normally cannot tolerate any caffiene since my heart starts racing. I was also working occasionally long hours (sometimes 20 in a day at times) and staying up really late researching what was wrong with me since I had never experienced anything like it in my life. I pushed through and worked long hours as usual until I drove myself very quickly into the ground. Then I made the mistake of taking large amounts of vitamin D which completely did me in. The next week at the end of February, I slept 16-19 hours a day and thought I would die. I rested all day other than working from my computer so got better each week from the rest and vitamin B. In April, first the Cheney diet got me doing better, the artisunate showed up a week later and allowed me to walk etc., then the I added other small things from the website that he recommended like B12 (certain kind-no mercury in it) and other stuff. Then 6 weeks later I went to Dr. Sharp and got a huge bag of medicine along with Cheney's protocol with more medicine. Then in the fall (oct?) I added Magnesium and Taurine shots which completely stopped the PEM as long as I took enough when I was overdoing it. Without taking it, I was very sick for 2-3 days after doing too much. Then I added Cheney's gut protocol which was very helpful. Then I was 75% well but still had PEM if I didn't take my medicine enough when overdoing it. Then in December (this month) I added non-infringing GcMAF and have had three shots. Finding and deciding on Dr. Cheney took many hours but finding Dr. Sharp was much more difficult and took literally 4 weeks of research. He is modest and does not promote himself but he took over Cheney's practice in 2004(?) when he had his heart transplant and handled his patients. The reason I love this site so much is that one blogger mentioned in one sentence that he was headed over to Dr. Sharp who had Dr. Cheney's cell signaling factors. BING! This allowed me to have access to Dr. Cheney's medicine (cell signaling factors) and protcol without the year and a half wait for an appointment with Dr. Cheney since I couldn't wait a year and a half. So Dr. Sharp took me in two weeks and I followed everything he said except I followed what Cheney said to avoid like Vitamin D since it made me so sick and other immune boosting things. I followed Cheney's diet to the point of only having a half of tablespoon of my own birthday cake. I followed it like a Nazi and it REALLY helped me. Dr. Cheney says if you do not fix the gut you will never get well. I ate brocolli twice a day, spinach, kale, brussel sprouts, green drinks, chicken, some seafood and rice and almonds, almond milk pretty much. There are more things you can eat but this is pretty much what I stuck to.

I realize I am very lucky in that my husband is a doctor he insisted I only see a specialist in Chronic Fatigue verses any other doctor since he said that any other doctor would not know what to do with me and get me sicker or would send me to a psychiatrist which I did not need. I sorted through somewhere around 130 doctors. First starting locally and then moving nationally and then moving internationally. My husband could understand Dr. Cheney's website and said there were no side effects and that it made good sense he thought it would definitely work as a treatment. It seemed to be one of the few that was actually quickly changing people since he said many people went back to work in 90 days so we followed it exactly along with additional medicine from Dr. Sharp. That is the timeframes of everything. I am so thankful that I would like to donate to CFS causes the rest of my life until everyone has treatment available. It is unbelievable how sick this illness makes people and it feels hopeless. I used to cry everyday at a certain point in my illness. Now I want to find a way to help others.
 

CindyWillis

Senior Member
Messages
116
Q-"With all respect as well, I'm curious how long you were disabled from work for? Was it from November 2009 til March/April 2010? Was it due to the postexertional malaise or something else, meaning what were your worst symptoms? I ask because I read in another one of your posts that magnesium and taurine shots basically cured you of your PEM, and that's the first time I've heard of that for any CFS patient, so hence I wanted to make sure we're talking about the same PEM here."




A-Worst symptoms were no memory (couldn't remember the name of the company I worked for or my address or phone number or what I did two minutes later) Next worse, I couldn't walk and as much as that drained me, I absolutely could not stand still for more than 3 seconds without my heart feeling faint like I was going to just drop to the floor if I didn't sit down. Next worst, I was more tired than if I had worked 48 hours straight. I slept for 14 hours a day for months and still woke up feeling more tired than I had ever felt in my life. In the middle of the night, I couldn't sleep and would wake up in a sweat with my heart doing weird things like beating rapidly or irratically. I had a constant sore throat and low grade fever. I had incredible pain in my head and my body ached all over but especially in my joints all the time but the headache was especially bad in the evening. Talking seemed like the biggest use of energy. A 30 minute conversation wiped me out. My face and skin was white as a ghost and while I normally have a little acne, it all disappeared. People said I looked like a ghost. My housekeeper said she thought I was going to die. If I did too much or walked too far which would be very little like a block, I would have to sleep a lot afterwards and then for the next 3 days or 2-3 weeks depending on how much I overdid it, I was completely wiped out and had mental fog that was much worse. Over time this got down to a week and then 4 days and then 3 days. Now, with the magnesium and Taurine, I do not have PEM if I take a large amount when I overdue it.
 

Sushi

Moderation Resource Albuquerque
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Location
Albuquerque
does anbody know the names of the websites in the US and Israel that sell gcmaf ?

Hi undcvr,

I don't know the Israeli site. Dr. Cheney is getting it from BGLI in the Netherlands: http://www.bgli.nl/ There is some question though as to whether it will get through US customs if it is not shipped to a doctor's office.

As much as GcMAF interests me and sounds promising, I would not take it without the supervision of a doctor who has experience with it. First, you need to be positive for the retrovirus, and then, whenever you are treating a retrovirus it is possible to get a dangerous IRIS effect (check the Wiki article).

When the retrovirus gets knocked down a bit, the immune system can produce an intense inflammatory response to other infections that it was not able to deal with before.

The docs who are experienced with GcMAF know this and will prescribe a protocol to deal with it.

I think this is an area of caution and where good medical support could make or break you.

Sushi
 
Messages
92
Location
Holland
gc maf

hello

i am using gc maf.
Next week i get my 3 injection.
Im am a high responder, so i am very happy about that!!! :D
I am also using nexavir for 3 months.

xxx
 
Messages
5
Hi undcvr,

I don't know the Israeli site. Dr. Cheney is getting it from BGLI in the Netherlands: http://www.bgli.nl/ There is some question though as to whether it will get through US customs if it is not shipped to a doctor's office.

As much as GcMAF interests me and sounds promising, I would not take it without the supervision of a doctor who has experience with it. First, you need to be positive for the retrovirus, and then, whenever you are treating a retrovirus it is possible to get a dangerous IRIS effect (check the Wiki article).

When the retrovirus gets knocked down a bit, the immune system can produce an intense inflammatory response to other infections that it was not able to deal with before.

The docs who are experienced with GcMAF know this and will prescribe a protocol to deal with it.

I think this is an area of caution and where good medical support could make or break you.

Sushi

I really do not hope that a doctor is using BGLI Dr Steffan tested their product on behalf of Klinik St Georges and they did not find it potent.. that is a certainty. Not sure which one is used in De Meirleir but the single dose one sounds like the one to use or the Israeli one. I think it is important everyone should know.
 

Alexia

Senior Member
Messages
168
Location
Portugal
"I don't know the Israeli site. Dr. Cheney is getting it from BGLI in the Netherlands: http://www.bgli.nl/ There is some question though as to whether it will get through US customs if it is not shipped to a doctor's office."

Is this really true?? It's amazing..there are a lot of patients from the Netherlands that need to travel a long way to get the gc maf injections in Brussels and Dr. Cheney uses gc maf from the Netherlands?
 

Alexia

Senior Member
Messages
168
Location
Portugal
hello

i am using gc maf.
Next week i get my 3 injection.
Im am a high responder, so i am very happy about that!!! :D
I am also using nexavir for 3 months.

xxx

Hi Nabo,

Thank you for posting here. It will be very interesting to know how you will react to the gc maf injections!
 

CindyWillis

Senior Member
Messages
116
I really do not hope that a doctor is using BGLI Dr Steffan tested their product on behalf of Klinik St Georges and they did not find it potent.. that is a certainty. Not sure which one is used in De Meirleir but the single dose one sounds like the one to use or the Israeli one. I think it is important everyone should know.

fullofbeans - Can you tell me more about the testing of BGLI and not finding it potent? Also, what is the single dose one and the Israeli one? How does a patient get access to either of these? Thank you for posting this information.
 

Lou

Senior Member
Messages
582
Location
southeast US
Hi Cindy,

I will take my first injection of gcmaf next Monday. It came from BGLI and the post about it not being very potent concerns me. Would you mind telling me whether your gcmaf also came from BGLI? Thanks, glad you're much better these days.
 

Sushi

Moderation Resource Albuquerque
Messages
19,972
Location
Albuquerque
I really do not hope that a doctor is using BGLI Dr Steffan tested their product on behalf of Klinik St Georges and they did not find it potent.. that is a certainty. Not sure which one is used in De Meirleir but the single dose one sounds like the one to use or the Israeli one. I think it is important everyone should know.

Hi fullofbeans,

Could you tell us more about this testing and maybe a link?

De Meirleir doesn't use the BGLI GcMAF--but I don't know what he does use. At least this is what I have gathered from reading forums.

Sushi
 

CindyWillis

Senior Member
Messages
116
Hi Cindy,

I will take my first injection of gcmaf next Monday. It came from BGLI and the post about it not being very potent concerns me. Would you mind telling me whether your gcmaf also came from BGLI? Thanks, glad you're much better these days.

Yes. BGLI and is working extremely well so I woudl like to know about what the alternatives are that would work even better.
 

Alexia

Senior Member
Messages
168
Location
Portugal
Hi Fullofbeans,

I'm also curious to know if the information you wrote about BGLI is based on reliable sources.. I was planning to contact them (BGLI) to try to find out if there is a doctor in the Netherlands that uses Gc-MAF.
 

Lou

Senior Member
Messages
582
Location
southeast US
Hi guys,

I start treatment with gcmaf this coming Monday. My doctor says part of the protocol is an anti histamine and she wants me to get started with it. But I have a lot of side effects with most any drug, and in addition they only seem to work a couple of times before my immune system block them.

My question is to anyone already on gcmaf. Do you take anti histamines as part of the protocol? Is there anyone out there who has responded postively to gcmaf without taking anti histamines? Thanks!!
 

mojoey

Senior Member
Messages
1,213
Hey Lou,

Yes this is common with the doctors using BGLI gcmaf, although I'm not sure KDM has used it much. I took benadryl with the gcmaf, and now that I'm off gcmaf still take benadryl for sleep. I don't handle most drugs either, but the benadryl seems fine. If you don't tolerate it, taking Histame is an option, albeit an expensive one. Singulair is a MAO inhibitor which is another route to tackle the storm.
 

mojoey

Senior Member
Messages
1,213
Lou,

Regarding what you say about VDR, BGLI actually says VDR doesn't matter. Not saying they're right or wrong, but that that information is out there. I disagree that it doesn't matter based on Yamamoto and Ruggieros' study. It may just be that the testing still needs refining.

Also, based on what you said about CindyWillis not testing as a high responder: although that is true, I would advise patients to see if they have the same signs as she has. She recovered in a really short amount of time so many of the downstream effects might yet be there. Also, at her worst she was sleeping 19 hours a day. I never had to sleep that long even when I was at my sickest; even if I wanted to I couldn't. Instead, I was sleeping less and wanting to sleep more, and unable to even work part-time from a computer due to cognitive issues and stress-induction issues, which Cindy was also able to do at her sickest. ALso, she said she is able to tolerate 300+ supplements a week. Even though they're homeopathic, most CFS patients cannot tolerate that just because of the alcohol content so she seems to have a leg up on her liver enzyme function even if they're genetically identical to a lot of CFS patients.

However, she wasn't able to tolerate Vit D without gcmaf, and that was also my experience (I was able to take 15000iu with my gcmaf injections).

So all of this needs to be taken into consideration when judging the role of VDR before we have standardized testing for it.
 
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