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

vli

Senior Member
Messages
653
Location
CA
I just want to ask anyone on Gc Maf if they also experience problems with sleeping despite taking medication. I usually take something to go to sleep and Trazolan to sleep through, but after six injections I wonder if the effect of my sleepmedication is diminshed by the Gc Maf? I only sleep five hours a night depsite being exhausted I can't sleep during the day. (This has always been a problem to me during my illness). If someone else is experiencing the same difficulties, please let me know.

Berthe I am definitely having the same problem. I've had 11 shots and very bad quality sleep the last two weeks.

Btw I know benzos are addictive but I'm sorry I simply won't survive this illness without clonazepam (Rivotril). It soothes my excitotoxicity and if not for it I would probably have been sent to the emergency room many times for "epilepsy" (or what my family says it looks like).
 
Messages
34
Location
Belgium
Same here : no rivotril = no sleep.

Before I started with GcMaf I tok 8 drops, and had a good night's sleep. Now I need at least 16, and sometimes till 35 the day after an injection.

I would not worry too much about it being adictive. I went to a neurologist to interpret my brain MRI, and told him I was affraid to become addicted. He told me that the first choice for chronic sleeping problems was an anti depresant (Trazolan/Remergon/Redomex) but since I had already tried those without positive benefits, he said than Rivotril is the next best choice, because it is actually an anti eleptic medicine (epileptics take up to 70 drops a day)that is a lot less addictive then the classic sleeping aids like stilnoct, lendormin and zolpidem. Those are really hard to get off of. He also told me he knows people that where on it for more than 15 years, and are still sleeping well with 8 drops, so you don't have to increase the dosage like with zolpidem to get the same result, unless ofcourse you are on GcMaf, like we are. I also spoke to KDM about the double dose that I was taking during my last visit, and he didn't seem to find it a problem.

Take care...
 

froufox

Senior Member
Messages
440
Hi Joey,

I personally didnt notice any perfumes on the staff at the clinic, or in the clinic itself and I am pretty sensitive to perfumes etc, and can generally easily smell them around me, and try to avoid wherever possible. I dont think u can predict the clinic tho because there'll be a different set of patients there every time, some of whom might wear perfumes.

At the Eurovolley Hotel, again I didnt have a problem with the room, but on my second visit there was a smell of polish in the corridor as the cleaner was working which I was concerned about. However, it didnt really come into the room so all in all it was manageable for me.

I shared my experience to people who wrote to me about these issues privately, but made it very clear that that was my experience and that they might well be more sensitive than me. I guess others havent posted about it because they dont have MCS, or its not that bad.

I think it just goes to show that we're all different with different degrees of sensitivity and no-one can predict how anyone else will react to a different environment, and you have to make that personal choice about whether to take a risk or not. Also if the MCS you have is extreme, its always best to check beforehand with the hotel or wherever else you're going to visit.

So I've received word that KDM's office, staff, and the Eurovolley hotel are heavily scented. Just curious how this has managed to fly under the radar for so long. Are most patients that have gone to see him not MCS? I am terribly reactive to chemicals. Or is it not customary to accommodate your patients' kryptonites in Belgium?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
So I've received word that KDM's office, staff, and the Eurovolley hotel are heavily scented. Just curious how this has managed to fly under the radar for so long. Are most patients that have gone to see him not MCS? I am terribly reactive to chemicals. Or is it not customary to accommodate your patients' kryptonites in Belgium?

Hi Joey,

I tend to agree with Frou about KDM's clinic. I haven't stayed at the Eurovolley (I am about to) so I can't comment on that.

I am not a "canary," but another patient who is, said that KDM's clinic was fine on arrival--when there were no people there. But when the people began arriving the scents came with them--not from the clinic itself. And, of course, it only takes one person wearing clothes washed in scented laundry detergent to make a person with severe MCS miserable.

Sushi
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Hi Joey,

I tend to agree with Frou about KDM's clinic. I haven't stayed at the Eurovolley (I am about to) so I can't comment on that.

I am not a "canary," but another patient who is, said that KDM's clinic was fine on arrival--when there were no people there. But when the people began arriving the scents came with them--not from the clinic itself. And, of course, it only takes one person wearing clothes washed in scented laundry detergent to make a person with severe MCS miserable.

Sushi

Agree with Frou & Sushi. I don't have MCS but I do react to strong smells. I didn't notice any strong smells in either the hotel or clinic.

I guess only an MCS person can tell how an MCS person is going to react.
 

mojoey

Senior Member
Messages
1,213
Different degrees of MCS indeed. I'm probably not MCS to the extent as the person that reported that either, so it's good to hear all of you guys fared well.
 

leela

Senior Member
Messages
3,290
hey mojoey,

where does one get HLA-DR tests done and do they come with an interpretation or resource for interpreting?
 

leela

Senior Member
Messages
3,290
Thanks. I just ask doc to request HLA-DR test? In case my doc hasn't heard of this, can you give me a brief descriptor of what specifically it looks for?
Sorry to bug you.
 

mojoey

Senior Member
Messages
1,213
Physician's order sheet with ICD and CPT codes:
http://www.survivingmold.com/docs/Physician Order Sheet_12_8_10.pdf

"Human Leukocyte Antigens (HLAs), are found on the surface of nearly every cell in the human body. They help the immune system tell the difference between body tissue and foreign substances.

The immune response genes are found on chromosome six. Patients could have two alleles, copies of genes (for each gene, one allele is inherited from a person's father, and the other is inherited from a person's mother), out of approximately 10 possible, as part of their genotype. Based on Dr. Shoemaker's data, in normal populations compared to international registries of gene frequencies of HLA DR, we know the frequency of mold illness-susceptible patients approximates 24% of the normally distributed population. Almost a quarter of the normal population is genetically susceptible to chronic mold illness. Three quarters isn't."
- http://www.survivingmold.com/diagnosis/lab-tests
 

Rrrr

Senior Member
Messages
1,591
So I've received word that KDM's office, staff, and the Eurovolley hotel are heavily scented. Just curious how this has managed to fly under the radar for so long. Are most patients that have gone to see him not MCS? I am terribly reactive to chemicals. Or is it not customary to accommodate your patients' kryptonites in Belgium?

hi all,

i am the patient who talked with frou about the eurovolley hotel and whether or not it would be too scented for me. as frou and garcia and sushi say, we are all different, so everyone will react according to their own level of sensitivity. in fact, another patient, along with frou, told me they did fine at eurovolley hotel, too.

i AM highly sensitive. 2.5 yrs ago i got a bad mold exposure and my MCS went thru the roof. this is my level of sensitivity: i have to wear a mask on an airplane ride due to the perfumes. i can't go into a Target store (or walmart, or kmart or any clothing store) without feeling toxified. and if i manage to stay there, buy a shirt and bring it home, i will have to wash the shirt about 3-4 times in baking soda and vinegar before the perfume from the whole store is gone from the shirt (in my noses opinion). so that is the level of sensitivity i am at. another gage: if you have clothes on that you washed in "normal" laundry products, i'll have to put plastic on my car seat before you sit in my car, for fear that your clothes will leave a scent on my car seat. i hope that gives you an idea of my level of MCS: high.

that said, in my experience, the Eurovolley hotel is highly toxic. my partner does not have mcs, and he found it overwhelmingly scented, too. it was all about the cleaning fluids. mostly the laundry soap, which permeated the rooms and all the air in the whole place, even outside the hotel. and it was also from the cleaning cart that remained in the hall all day long. it was also in the general air, as the laundry machines spewed their exhaust into the outside air, outside the hotel.

both my partner and i found that most people in belgium are scented as well. folks would walk by us, and leave a trail of perfume. it is a culture where many wear perfume on a daily basis. the staff at KDMs were no exception. they wore a good deal of it. but not KDM himself, that i could tell.

i had a good connection with the nurse at KDM's clinic and i really liked him. but each time he came up to me, i got dizzy from his cologne. same with the administrative staff. i would walk up to a staff member to ask a question, forgetting their perfume, and then have to take several steps back. (i did this gently and i'm sure none knew. i thought about telling them, but in truth i was so overwhelmed, i did not.)

the patients in the waiting room were mixed. some not scented, some scented. but as someone just posted, it only takes one perfumed person to chemicalize a whole room. i had to sit by the front door near the fresh air for the 3-4 hours i was there each day (2 days).

i want frou and others to know how much i appreciate all their help telling me about the hotel and their kdm visit!! my reaction to the place was my reaction. it was not hers or anyone else's. one thing i have learned is that there is no way someone can guess their own reaction to a place in advance, based on someone else's reaction to a place.

i'm pretty darn sensitive. i had thought that frou and i were more or less on the same level. but i now see that that is too hard to assess via emails. clearly i'm much more sensitive.

on the other hand, i wonder if the hotel changed laundry soap recently, because it was soooo bad.

by the way, strangely, the hotel towels were fine. it was the sheets that were toxic to me (and thus the mattresses, which we had to wrap in mylar and ducktape to tolerate). and the air, and the cleaning supplies.

i'll report more from my visit soon, about other things besides chemicals. :)

again, many hugs to all who told me in advance how eurovolley was for them. i really appreciate all their advance help!

best,
rrrrr
 

Rrrr

Senior Member
Messages
1,591
Does anyone know if GcMAF has an effect on Testosterone levels?

ronan, i have not heard, but i'll bet that if it is effecting people's sleep, it is effecting their homones, too.

i know one gcmaf patient said they felt a ressurgence of their sex drive. :)
 

Rrrr

Senior Member
Messages
1,591
most of the patients here are on kdm's gcmaf. but here is an update from someone on bgli's gcmaf. i added this to the chart with his permission.

"I am able to work harder without the terrible crash. I must be absorbing more nutrients from food and supplements because after years of muscle loss I am now definitely getting stronger again. My concentration is improved. Don't get brain fog nearly as easily. Less intolerant to chemical smells. More energy. Not saying I'm cured, it's a long way yet. However now I see am going in the right direction. Those gains listed above are improvments --depending on which one-- ranging from 20-30%."

a number of cheney patients must be on their gcmaf now, too. i hope we hear something from them soon, also.

rrrr
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
the goal of GcMaf is to strengthen the immune system so that it can eradicate XMRV?

Yes, strengthens the immune system, but no evidence yet that it can fully eradicate XMRV.
Various cancers, HIV and presumably XMRV release an enzyme called nagalase. This enzyme blocks the immune system's activation of macrophages. Macrophages are a very important component of the immune system.

GcMAF circumvents the effects of nagalase and triggers the activation of macrophages.

This is my interpretation of the science, put into laymans terms. Forum, please correct any misstatements or add clarification. Thx.
 

lobba123

Senior Member
Messages
250
i have bought gcmaf, a i understand it is better to frozen at the lowest temp possible:
frizer -24 and fridge 0
what do you think about fridge 0, is it too low?
 

lobba123

Senior Member
Messages
250
to those who have used this storage strategy, Sushi or others:

According to the nurse at the clinic (KDM) it is OK to let the GcMAF thaw briefly and then to refreeze it. Of course this isn't the optimal storage strategy, but he said it could be done several times without the GcMAF losing potency.

this can really help me a lot because i have vials with 8 shots, making 1 shot every 5 days i'd have about 6 weeks of gcmaf stored in the fridge and a consistent loss of potency
if the strategy above works i'd put the vial back in the frizer at -24 and maybe lose less potency at the 5th or 6th week, what do you think?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
to those who have used this storage strategy, Sushi or others:

According to the nurse at the clinic (KDM) it is OK to let the GcMAF thaw briefly and then to refreeze it. Of course this isn't the optimal storage strategy, but he said it could be done several times without the GcMAF losing potency.

this can really help me a lot because i have vials with 8 shots, making 1 shot every 5 days i'd have about 6 weeks of gcmaf stored in the fridge and a consistent loss of potency
if the strategy above works i'd put the vial back in the frizer at -24 and maybe lose less potency at the 5th or 6th week, what do you think?

Hi lobba,

I think what they are advising if you are taking multiple shots from a vial is to unfreeze it once, divide your shots into multiple sterile syringes, cap the syringes and refreeze them. Then you just remove one syringe and let it thaw before injecting.

I have been taking injections of one half vial and getting them at a clinic. The clinic did it this way: I brought my vial (taken from the freezer just as I left for the clinic), they injected half, sealed it again and I put it in a cooler bag filled with ice blocks until I returned home and put it back in the freezer for the next injection. The freezer in the fridge is set at - 20 celcius.

I am about to see KDM again and hopefully get a supply to carry to the States. I will receive it frozen and put it in a cooler bag with ice blocks and put that cooler into a slightly larger one. Hopefully it will stay quite cold for the 13+ hour flight. Then I will refreeze it all.

Sushi