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

[Forebearance]

I wish you could get more brain improvement again, too, Daff.

I found this study which I think might be relevant to what is happening to me. But I'm not enough of a scientist to fully understand it. I have been gradually getting a goiter for years and I seem to be really low in iodine these days.

http://www.ncbi.nlm.nih.gov/pubmed/2505621

 

[Sushi]

I wish you could get more brain improvement again, too, Daff.

I found this study which I think might be relevant to what is happening to me. But I'm not enough of a scientist to fully understand it. I have been getting a goiter for years, but it seems to be worse and I seem to be really low in iodine.

http://www.ncbi.nlm.nih.gov/pubmed/2505621

This might need a separate thread, but have you ever done an iodine challenge test or checked levels in another way?

It isn't uncommon to be deficient and many (including me) supplement.

Best,
Sushi

 

[Forebearance]

Thanks, Sushi. I haven't checked my level of iodine. I've been taking it for years, as well as other thyroid supplements like Armour thyroid.

The point I was sneaking up on was that if a person with CFS has hypothyroidism before beginning GcMAF, maybe we should warn that person that s/he may need more iodine while on GcMAF.

But it would be good to hear from other people with hypothyroidism who are taking GcMAF also.

I'll be happy to move this to another thread or the side effects thread if you want me to.
Fore

 

[Daffodil]

i suspect i may be borderline hypothyroid but they dont do the proper testing here. i have never checked my iodine before!

 

[Overstressed]

Wow, you guys, there is sure a lot to figure out.
OS, after I took GcMAF for six months and then stopped ((because I ran out) my thyroid function plummeted. My TSH was 13, which is the highest it's ever been. It happened really suddenly, and I am trying to figure out why.

Do activated macrophages use up thyroid hormone, or iodine?
Does an increase in Vitamin D or an activation of the immune system demand more of the thyroid?

Fore

Hi Forebearance,

I stopped once before over a period of 4 months I think, but my thyroid didn't increase. But, one of my very first signs of illness on my labs was the thyroid going up. That was during the acute phase of an infection. So, I assume it's a result of your immune system fighting an infection? I would then say that you experienced a re-activation?

On the effect of Vit-D when using Gc-Maf, I have seen a number of people's labs where Vit-D suddenly went horribly down, after going upwards, first. This happened to me too. I must say, I was at that time supplementing with Vit-D. Before I started Gc-MAf, my Vit-D was 27. While on Gc-Maf, it increased to 35 and went suddenly down to 21. Short after, I relapsed.
It's clear that some people experience a relapse, and other's don't. I'm starting to wonder whether the ones relapsing, have a retrovirus infection, and the other's perhaps don't? Or do indeed polymorphism on your vit-D receptors gene play a role?
Best wishes,
OS.

 

[Forebearance]

That's too bad about your relapse,, Overstressed. Man, how rough.

Those are good questions. Do you suppose your body suddenly needed a whole bunch of Vitamin D?

Well, I guess we need more data before we can draw conclusions.

Daff, I know it's not very scientific, but I just take a little more iodine and see if it makes me feel better. I think it's pretty harmless to experiment with, in small doses. I was reading that people in Japan get a lot more than people in the US do, because they eat so many sea vegetables.

Fore

 

[Daffodil]

thanks fore. i am gonna think about that. ugh so much to remember.....

i skipped this week's gcmaf dose cuz i woke up feeling pretty inflammed, especially in my head and neck.

maybe next week i will try 10 ng instead of the usual 15.

xoxoxoxoxo

 

[Carla-nl]

thanks fore. today i had a very very scary rage episode. i dont understand why this always happens when i start to feel better in my head (which is rare). so much anger boils up and explodes. today was so bad....worse than ever before. i destroyed $400 worth of things. i almost went to psych ward. how am i supposed to handle this? i wont be able to find anyone familiar with the "opening" of a brain after 20 yrs of fog....who can help me?

anyway, all the crying really did a number on the CFS and now i am all fogged up again.

i dont know why more people on this board do not experience extreme mood swings. maybe i am really bipolar and need treatment. but how do i know how psych meds will react with the GcMAF??

oh you people reading this must think i am a freak LOL

Daffodil, are you taking any calcium supplements ?
(bear with me...)

Carla

 

[Daffodil]

hi carla. i am not taking anything but 1000 IU vitamin D and some CoQ10. my mood swings have gotten a little better. i took 13 ng of GcMAF on friday and have been pretty inflammed ever since :-/

i still have some energy surges but they seem to be getting less and the improvement is not moving foreward at all. i still have mostly medicore or bad days. i have improved overall maybe 20% so far, and its been 8 months now since i began the GcMAF. the fog is very frustrating.

i feel this weird ..kind of....activity...burning..churning...inside...around the brain stem area..where the neck connects to the shoulders...and sometimes it radiated into my shoulders too. .."ground zero" as they say.

 

[Carla-nl]

Is it possible for you to get your Calcium levels measured ?
And, Calcitriol (1.25 Dihidroxy vitamin D) ?

See, what happens is this; gc-maf normalises the bodies own vitamin D metabolism. If you supplement with either Vitamin D or calcium, your calcitriol levels might get too high, setting you up for hypercalcemia.
That's one thing.

The other thing, for some reason if i take calcium supplements, i get angry...... it also happens if i take too much gc-MAF, exactly the same feeling. AND the same thing if i eat calcium products.... (yoghurt, ice, milk)

No one until you has reported similar manifestations. I'm thinking the Vitamin D is a bit too much for you. If you raise vitamin D, you might also be raising calcium levels, even if you are not taking calcium supplements directly. And i'm thinking it's perhaps best to get down to 10 ng a dose and only dose again if you feel it wearing off. Some patients never ever get past that dose (10ng) but do well in combination with other medications.

To combat the inflammation, i have heard several suggestions;
- ibuprofen (but that's not well tolerated)
- clemastine (up to 2 mg a day)
- co treatment with an anti-viral (artesunate, or valtrex) and / or abx like azithromicine.

Let me know what you think.
Carla

 

[aquariusgirl]

carla.. who is treating with gcmaf AND antivirals? thanks.

 

[Carla-nl]

Hi Aquariusgirl,

After i found out it worked, my family physician simply wrote the scripts as he did not know what else to do with me.
I think any proper integrative medicine clinic would be willing to help out with this.
Otherwise, contact BGLI, they have doctors working with their protocol all over the world. www.bgli.nl

Hope this helps,
Carla

 

[Daffodil]

Thanks Carla

The problem is that since my antibodies are not high, and I have tried antivirals for several years with no help, no one will give me them now. Its too bad I finally disposed of the bowls full of Valtrex and Valcyte I had lying around for so long!

I started supplementing with the vit D just recently...but I will have all the bloodwork done at the end of this week.

To be completely honest, I think now that my mood swings are just a result of my being a little psycho LOL. I guess now that I feel a little better, the reailty of my life and future, and what I have lost, is slowly dawning on me.

I am nervous about anti inflammatories because my doc told me not to take them.

I do think that I will improve with time on GcMAF, because so far, everytime I have felt bad and then improved, I am better than the time before.

I neglected to mention that I did have some very good days - it is so hard to remember them when I feel sick. On those days, I started looking for part time work and getting my resume ready. I knew it was much too soon, but the motivation was really there.

This is really an excrutiatingly slow process when one has been sick for decades.

xoxoxoxoxo

 

[aquariusgirl]

I get MORE inflammation on AVs + gcmaf.. than gcmaf alone...

 

[Daffodil]

hi acquarius....so interesting. cannot believe all of this is still a mystery after this long!

 

[GcMAF Australia]

Hi
i have information suggesting that the Maf yogurts may vary in strength.
The colostrums used for the yogurts can vary in strength and also people's systems also obviously vary.
Thes yogurts could be really potent.
there are indications that doses as low as 15 ml could be sufficient.
The motto is -
Start slow and start low.
If there are problems it can take up to about one month without the MAF to settle down again.
BEST WISHES

 

[ukxmrv]

I found that the high strength MAF314 suited me fine at the standard daily dose and the MAF878 had either a very slow effect or none at all.

However, other patients reported getting severe reactions at small amounts.

There was an IRIS effect with the MAF314 which took time to clear but amazingly for me (I've not done well with possible Herx's in the past) I was able to control it a little and it went OK.

It may be that if we can tolerate a product (down to luck, genetics, co-infections etc) then the high dose may be beneficial. I'm thinking of Valtrex that I had no reaction to at a small dose and then doubled it for an immediate response.

Be interested to see any information that you have GcMAF Australia comparing the different strength of yoghurts.

 

[GcMAF Australia]

This info comes from Don Lewis in Melbourne.
he just found that his patients could not tolerate the 120 mls of MAF314.
some were herxing on 20 mls!
I suggested that a possible cause could be the strength of the colostrums used.
His next batch of colostrum is from New Zealand and is first day colostrum which is expected to be quite potent in the fcators involved.
I am wondering if cows from different countries could have different potencies. also may be seasonal differences.??
He thinks that reactions could be exponential like, so a doubling could produce a 10 fold effect. This is an interesting concept.
Also the bacterial types in the MAF probiotics are also different

 

[ukxmrv]

The MAF314'sprobiotics are all the same - aren't they? That is the composition I had last year should be the same?

Interesting point about the colostrums. I've heard about the NZ stuff. The London patients are buying from the German source that the Austrian doctor recomends or using Kirkman labs.

Thank you for the info!

 

[GcMAF Australia]

The same probiotics are in each MAF314 preparation.
But may depend on the preparation?
Don's staff prepares all of it, not the CFS ppl.
Don used US colostrum.
So how are you going on it??