Gcmaf-reactions and side effects

[Daffodil]

hi lerae i agree with sushi..if you took 25 ng, that is too large a dose to start with. the same thing happened to me on 25 ng, i am now on 15 ng.

 

[Recovery Soon]

Hi All.

2 weeks ago I took my first dose of GCMAF (.25) and had severe reactions which persisted for a little over a week (much worse the first half). The effects hit about 18 hours after the injection.

Dr. Enlander suggested I take 2 weeks off which I did.

Last night we agreed to try for a reduced dose (.10) - at over 24 hours there are some faint odd sensations- but nothing too worrisome.

If things stay the same I think the next move will likely be 1.5 next Tuesday.

I'll try to report back.

Update-

So far I have taken 5 doses - 1 per week-

They were:
.25 (severe reaction)
.10 no reaction
.15 no reaction
.20 no reaction
.25 no reaction

Strange how I severely reacted to .25 on week one and then no reaction to same dosage this week.

Cannot say with any confidence there is any change in condition in either direction. I'll try to keep updates.

 

[bykerchic]

Hi mojoey,

I just want to comment on 'to Vit-D or not': all I can say is to be careful with it. After reading Lobba's experiences on supplementing with Vit-D, I decided to add(to Gc-Maf) Vit-D too. I must say, it was not the best decision I took, lately. I had the feeling that it worked...contraproductive, i.e. increasing the autoimmune component. I got these small pitches on my fingernails(psoriasis), severe sore throat, joint&muscle pains, eye pain, feeling fatigue...

I decided to stop the Vit-D supplementation, and slowly, my immune system is recovering. I must admit, at that time, I had two occasions where I drank way too much alcohol. Alcohol is known to lower your immune system. So, perhaps I'm discrediting the Vit-D's, but I don't think it's the case. I had also periods before, where I added Vit-D, and it improved my condition heavily. I think, Vit-D is at least a double-edged sword thing...

Take care,
OS.

 

[bykerchic]

Hi just wanted to comment on the vitamin D supplementation. I spoke with a person where I ordered my GCMAF from and they said to take very low doses or none at all and just get plenty of sunshine and from food sources as too much vitamin D while on the GCMAF can cause hypercalcemia which is very dangerous. I felt much better when I stopped the vitamin D. Also she told me that if you don't get a response at first don't give up because some peoples immune system is so weak that it may take quite awhile before you will notice anything because it has to build it back up enough to have a response to your illness which is why we became sick in the first place. Good luck to all.

 

[suzanne]

Just a comment about the vitamin D supplementation. I have always had trouble tolerating vit D3. I also know that I have a double mutation on one of my vit D genes.
I recently had my vit 125 D tested and it is so high ( off the ref range) that my dr said she was amazed- she had never seen such a high result. My normal vit D level is a bit on the low side. But she has told me to definitely not supplement vit D and to stay out of the sun if possible and also avoid high vit D food sources- she says that all these are likely to make me feel worse given my results. I find all this interesting - including that I also respond well to the Marshall protocol drug benicar- makes me feel better and that is also related to the vit d receptors and a blockade action.

I ma not sure if this will directly be helpful for anyone, but I thought it was useful to post given that you have been discussing vitamin d and GcMAF.

 

[Sushi]

Just a comment about the vitamin D supplementation. I have always had trouble tolerating vit D3. I also know that I have a double mutation on one of my vit D genes.
I recently had my vit 125 D tested and it is so high ( off the ref range) that my dr said she was amazed- she had never seen such a high result. My normal vit D level is a bit on the low side. But she has told me to definitely not supplement vit D and to stay out of the sun if possible and also avoid high vit D food sources- she says that all these are likely to make me feel worse given my results. I find all this interesting - including that I also respond well to the Marshall protocol drug benicar- makes me feel better and that is also related to the vit d receptors and a blockade action.

I ma not sure if this will directly be helpful for anyone, but I thought it was useful to post given that you have been discussing vitamin d and GcMAF.

Suzanne, (and others!)

Please note, the very high Vit D 1,25 is a serious symptom (depending on how high) as it also means that your calcium may be too high also. I think you have mentioned that you are getting it checked again--good!

It is common for ME/CFS patients (though of course not all!) to have high Vit D 1,25 and low Vit D 25. Hopefully this will normalize with gentle GcMAF treatment over time.

I was also told not to take Vit D while on GcMAF and to be careful of the sun until it was clear what was happening with the ratio between these two forms of Vit D. Mine did normalize and both came into the reference range.

Best wishes with this.

Sushi

 

[alice]

I am taking GcMaf from BGLI in The Netherlands. I am taking it sublingually., held under tongue for at least 5 minutes. I was instructed to not supplement with Vitamin D. For those of you that are not supplementing Vit. D, my question is- how do you handle your daily multi viti/mineral. I figure that I am getting about 325 IU Vit. D3 in the capsules I take -- Thorne Basic Nutrients V-- taking 2 capsules per day at this point.

If you are not taking the multi vit/min then are you supplementing the ingredients in separate supplements? I already supplement additional CA, Mg, Zn etc etc, but not all the ingredients. Since GcMaf is probably going to be a long term treatment, I'm wondering what others are doing..

I am at week 4 and still at 10 ng (0.02 cc).. I have had a few really bad days, but this week has been okay - I seems to be getting more lower abdominal discomfort/cramping and loose stool. I also take valacyclovir and that may be contributing to the problem, but I've been taking valacyclovir for almost a year..

Thanks, alice

 

[Xandoff]

This may have been addressed in previous posts but since my last two or three GcMAF injections (total of 10 shots now) I am becoming more sensitive to mold and other allergans. Anybody have experience with this? My initial impression is that part of my dormant immune system is re-awakening. Any thoughts would be appreciated.

 

[Sushi]

...If you are not taking the multi vit/min then are you supplementing the ingredients in separate supplements? I already supplement additional CA, Mg, Zn etc etc, but not all the ingredients. Since GcMaf is probably going to be a long term treatment, I'm wondering what others are doing....

Thanks, alice

I take everything separately--yes it is a pain!- but there are several things I don't want in most multis--calcium, folic acid, cyanocobalamin, and Vit D--to name a few.

Sushi

 

[alice]

I take everything separately--yes it is a pain!- but there are several things I don't want in most multis--calcium, folic acid, cyanocobalamin, and Vit D--to name a few.

Sushi

Hi Sushi,
Are you limiting your CA supplementation also?

Just wanted to mention though that there are several multi's available now where folic acid and cyanocobalamin has been replaced by methyl/hydroxy/adenylcobalamine and folate.

 

[Sushi]

Hi Sushi,
Are you limiting your CA supplementation also?

Just wanted to mention though that there are several multi's available now where folic acid and cyanocobalamin has been replaced by methyl/hydroxy/adenylcobalamine and folate.

My doctor doesn't want me to take any calcium. I know that there are multis with active folate and active B12, but I inject hydrox B12 and don't want to take any B12 orally. I also want to very carefully monitor doses of active folate.

Best,
Sushi

 

[Forebearance]

This may have been addressed in previous posts but since my last two or three GcMAF injections (total of 10 shots now) I am becoming more sensitive to mold and other allergans. Anybody have experience with this? My initial impression is that part of my dormant immune system is re-awakening. Any thoughts would be appreciated.

Yes, Xandoff, I have experienced more sensitivity to the biotoxins that bug me since starting GcMAF. I suspect this is related to increased inflammation in general, because those toxins cause inflammation. Switching to MAF 878 has helped, because it seems to cause less in the way of side effects in me.

 

[Overstressed]

Hi all,

I'm was reading this thread and it looks like that you better not supplement with vit-d while on gc-maf. I must say I'm worrying a lot know, since I supplemented with vit-d and I felt worse over time. Now, some people say it can cause hypercalcemia and this could be dangerous? What are the symptoms then? Is it especially dangerous for the heart, your artery(build-up of calcemia)? I remember -during that time- episodes of heart racing. Also, around that period I had two occasions where parts of my teeth enamel broke off. Could that be related to hypercalcemia?

Should I tell my cardiologist about this?

Any good advice is much appreciated!

Thanks,
OS.

 

[Sushi]

Hi all,

I'm was reading this thread and it looks like that you better not supplement with vit-d while on gc-maf. I must say I'm worrying a lot know, since I supplemented with vit-d and I felt worse over time. Now, some people say it can cause hypercalcemia and this could be dangerous? What are the symptoms then? Is it especially dangerous for the heart, your artery(build-up of calcemia)? I remember -during that time- episodes of heart racing. Also, around that period I had two occasions where parts of my teeth enamel broke off. Could that be related to hypercalcemia?

Should I tell my cardiologist about this?

Any good advice is much appreciated!

Thanks,
OS.

Hi OS,

Can you check your Vit D 1,25 and calcium levels? This should give you a good indication if you have a problem with this. Looking on the internet, it seems that there are a variety of symptoms, so testing is probably the best way to check.

Best wishes,
Sushi

 

[Forebearance]

I do take Vit D with MAF, because I am really low in both forms of Vitamin D, and I need SOME Vit D in order for the MAF to work. That's just me, though.

 

[mellster]

http://ctheblog.cforyourself.com/2008/12/overdosing-on-vitamin-d-side-effects.html

This seems like a great write-up and comments and symptoms to look out for when supplementing with D3. cheers

 

[Xandoff]

I take everything separately--yes it is a pain!- but there are several things I don't want in most multis--calcium, folic acid, cyanocobalamin, and Vit D--to name a few.

Sushi

Great point on the multi-vitamin.....I will have to re-think my thinking! All my Best to you Sushi!

 

[self]

I have just seen KDM and had a 1/2 vial IV of GcMaf as a test for my reaction. I have experienced a slow exacerbation of burning behind eyes and headaches with associated depression, joint pain and heart rate over reaction, also when waking from sleep it regularly takes me some time to work out where I am. I generally feel more unwell. This is scarey as the reaction has continued after 7 days. Im scared that if I was taking this regularly and in higher doses I would become housebound again. Does anyone have any comments. I am waiting on all the blood test results and his treatment plan. I would say that I am an ME sufferer 28 years, rather than CFS. How do you all classify inflammation symptoms? I would say in my ignorance that all my joint pain and burning behind eyes and headaches seem to be inflammation but I dont really know whether thats what you all see as inflammation. Would appreciate some feedback if any one has any reflections. Why does the inflammation occur??