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

[mojoey]

Hey Sergio,

Are you talking about creating a private subforum or public one? I can probably help with this

Hi guys!

I just cached up with this thread after a few days without readingI wish I would have noted down what I want to say! Anyway, Ill write what I remember:

FrouFox: What exactly is Hepapressin?. Ive read in Wiki (http://en.wikipedia.org/wiki/Hepapressin) that it is similar to Kutapressin, that in turn is the same as NexavirAm I right or too brain fogged? Has KDM prescribed this to you? I am VERY glad to hear about your "mild" improvements. I dont think these mild changes that couldve been coincidences, are indeed just coincidences for all of us! ;-)

Cansado, I am very glad to hear that you also are feeling some slow and mild improvement! Yes, hang in there! ;-)

VLI, Thanks for describing your experience with the gastroscopy-biopsy procedureI have to do it maybe next week in Spain, and I definitely will be sedated. According to my Spanish doctor, the sedation is not an anesthetic. It is a benzo administered through a mask, in high doses. So much safer it seems.

I had a gastroscopy done years ago, without any sedation, and it was the most horrible experience Ive ever had. I couldnt stop swallowing and gagging every 2 seconds, and they could not observe my stomach properlyJust hope this time the sedation is strong enough to knock me out so that I dont pass again through this horrible experienceI will let you know! (BTW, I am XMRV+ by culture, but KDM wants to look again for XMRV and MLVs, in adittion to other viruses in this biopsy).

Hey, I proposed to open a new sub-forum in this forum (PR), for GcMAF, and no one answered! It is impossible to read the whole thread for new people, or to find specific postsCort, if you are reading, could you consider opening a sub-forum reserved for GcMAF?

Thanks for the idea of the spreadsheet. I am updating it every few days. There is a way to protect it. If we open a sub-forum for GcMAF, we can open another sub-sub-forum in the GcMAF sub-forum, privately, just for members. It can done in 2 minutes. Then we post the spreadsheet in a post in that forum, and thats it!

As far as Accutane for acne, YES, it was one of my main stressors to develop CFS, and a few patients have contacted me during the last few years reporting the same.

As far as insurances, my Spanish insurance covers the stomach biopsy, and it would cover the PCR for most of the viruses (except for XMRV and MLVs) if Id do it in a Spanish lab. I wont do it cause they do a qualitative PCR while in REDLabs they do a quantitative PCR. I am sure I could find another Spanish lab doing the proper PCR, but probably KDM wont trust a lab he doesnt know

I am sure I am forgetting somethinganyway, good luck to everyone and well continue in touch!

Sergio

 

[Sushi]

Pixilated vision

Wondering if anyone else taking GcMAF has had this symptom appear: sort of pixilated vision. I'd compare it to the "aura" that people often get before a migraine--but no migraine. I took some Rescue Remedy and clonazepam and it went away, but for an hour or so, my vision was broken up into geometrical light and dark shapes.

I've had this a couple of times before--once after drinking red wine years ago, and red wine can bring on a migraine. But that time too--no migraine.

Any thoughts? This is day 3 after my last shot.

Sushi

 

[serg1942]

Hi Joey,

I mean a public sub-forum, inside the section for treatments. I think this subject is getting bigger and bigger and deserves a sub-forum for its own, even more for the benefit of new people than for ours. what do you think? (So far, several people asked me for info regarding GcMAF, and although I referred them to this thread, it is too much to digest in a go for them...)

Un abrazo,
Sergio

 

[serg1942]

Hi Rich,

Your statement makes perfect sense to me, and it is very interesting that Prof De Merileir told us that the response to GcMAF was not only dependent on VDR polymorphisms, but also on your lymphocytes status...and these are the most affected cells from a lack of nucleotides due to a deficient folate cycle, right? (Together with the leaning cells in the gut I think?)

The problem is that I don't dare to take the folates...Maybe I wait to see if I improve to a degree where I can "afford" to handle the detox...Not sure how or when...

No, I don't think Prof De Meirleir is prescribing active folates...

Best wishes,
Sergio

 

[mojoey]

I see. Not sure how to categorize that since there's already a section for XMRV treatment, so we'll have to wait for Cort's response

 

[dannybex]

Wondering if anyone else taking GcMAF has had this symptom appear: sort of pixilated vision. I'd compare it to the "aura" that people often get before a migraine--but no migraine. I took some Rescue Remedy and clonazepam and it went away, but for an hour or so, my vision was broken up into geometrical light and dark shapes.

I've had this a couple of times before--once after drinking red wine years ago, and red wine can bring on a migraine. But that time too--no migraine.

Any thoughts? This is day 3 after my last shot.

Sushi

Hi Sushi,

I'm not on GcMAF so I can't say if that was a reaction to the shot, but I did have two of those 'silent' migraines -- the aura without the migraine pain -- back in August when I was pushing myself waaaaay too hard for a few days.

Kind of a freaky/scary symptom, but haven't had one since.

 

[Tony]

Hi Rich and Sergio, Part of my treatment plan with KDM is methylated folate, 250 mcg per day.

 

[Cort]

I think we can do a subforum in the XMRV treatment Forum. You want a subforum that you can start different threads on GCMAF in? I'm sure we can do that...we did another subforum elsewhere. If you all want that PM me...Look at the Advocacy Forum for a subforum and see if that works for you.

 

[richvank]

Hi Rich and Sergio, Part of my treatment plan with KDM is methylated folate, 250 mcg per day.

Hi, Tony.

Thanks for that information. I'm very happy to hear it, and I hope it pays off for you.

Best regards,

Rich

 

[safari]

Wondering if anyone else taking GcMAF has had this symptom appear: sort of pixilated vision. I'd compare it to the "aura" that people often get before a migraine--but no migraine. I took some Rescue Remedy and clonazepam and it went away, but for an hour or so, my vision was broken up into geometrical light and dark shapes.

I've had this a couple of times before--once after drinking red wine years ago, and red wine can bring on a migraine. But that time too--no migraine.

Any thoughts? This is day 3 after my last shot.

Sushi

I'm not taking GcMAF (yet), but this happens to me every now and then. My doctor told me it is a *manifestation* of a migraine.

 

[Nabo]

Hi,

KDM was away this week so monday i will email himunitas.
Still my symptoms are worse and worse! So really want to know what is happening.

and 1 question:
I already knew i was high responder but now i also know that:
BSM: High responder
Fok: Heterozygote

But what is heterzygote???? is it positive???

 

[lansbergen]

But what is heterzygote???? is it positive???

Depends on the specific gen/allel.

http://en.wikipedia.org/wiki/Heterozygote_advantage

A heterozygote advantage (heterozygous advantage) describes the case in which the heterozygote genotype has a higher relative fitness than either the homozygote dominant or homozygote recessive genotype. This selection favoring the heterozygote is one of the mechanisms that maintain polymorphism and help to explain some kinds of genetic variability. There are several cases in which the heterozygote conveys certain advantages and some disadvantages while both versions of homozygotes are only at disadvantages. A well-established case of heterozygote advantage is that of the gene involved in sickle cell anaemia.

Often, the advantages and disadvantages conveyed are rather complicated, because more than one gene may influence a given trait or morph. Major genes almost always have multiple effects (pleiotropism), which can simultaneously convey separate advantageous traits and disadvantageous traits upon the same organism. In this instance, the state of the organism's environment will provide selection, with a net effect either favoring or working in opposition to the gene, until an environmentally-determined equilibrium is reached.

 

[Sushi]

Hi, and 1 question:
I already knew i was high responder but now i also know that:
BSM: High responder
Fok: Heterozygote

But what is heterzygote???? is it positive???

Hi Nabo,

Lansbergen is correct in general terms, but from what we know about the VDR test, BSM is the more significant (according to KDM)--so your high responder status on BSM may "weigh" more than the Fok. The Fok being heteroxygote mean that the allele from one parent is good as a Vit D responder and the allelle from the other parent is not so good. So you are a moderate responder on FOK. this is assuming that the RedLabs test is correct--and this has been called into question.

Just guessing but your difficult response to GcMAF may be because it is working very well. I'd guess it is important to report this in detail to KDM so that he can adjust your protocol to make it more tolerable. He seems to have lots of ways to do this.

Best wishes. I envy you your high responder status, even though it hasn't been easy to live with. I think he may be able to tweak things for you. This is the importance of having an experienced doctor when taking GcMAF.

Sushi

 

[RivkaRivka]

hi nina,

i'm so sorry to hear of your reaction to gcmaf! was it kdm or bgli or another kind of gcmaf?

also, would you mind adding yourself to our chart found here?
https://spreadsheets0.google.com/cc...WzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

rivka

Hi all,

first of all: Thanks to everyone who is reporting their experiences on gcmaf here!

As some of you might know, I also tried it a couple of months ago but had to stop due to severe side effects (namely my muscle weakness got so bad that I had trouble breathing).

After the first shots I developed a horrible cough, something I never have. It took all of 4 months to abate after I got off the gcmaf.

At that time my doctor, who isn't knowledgeable about gcmaf but specializes in the immune system, told me this wasn't a sign for a clearing infection but merely an immune reaction that everybody would get on the drug.

From what I read here, although I haven't been able to read all 17 pages, this isn't something that occurs in everyone. So I guess I'm wondering if the cough really meant I was getting rid of something. I didn't feel any better after the gcmaf trial but then again I only took about 2.5 full doses.

Does anybody have any thoughts on this? Who else has developed a severe, persistent cough on gcmaf?

Thanks,
Nina


PS I recently tested positive for XMRV but didn't know that at the time I was on gcmaf.

 

[Rrrr]

hi all

been looking for the post that says what tests to take to prep for KDM, or what tests he orders.

can't find it on this incredibly long thread.

anyone know a shortcut?

2nd thoughts: is it in the KDM patient packet?

Aquariusgril,

This is what I got from KDM's office last week in prep for a possible appt with him in April. He is booking into April now.


OVERVIEW TESTS


Day 1

Consults with Prof. Dr. K. De Meirleir are on Monday morning and Tuesday afternoon or Wednesday and Thursday morning.

➢ First consultation with Prof. Dr. K. De Meirleir on a Monday morning, he will determine which tests need to be carried out.
Standard procedure : 1st breath test for lactose intolerance. Your presence is requested between 8h and 8h30 (nil by mouth). This test takes 4 hours. You need to follow some guidelines before taking the breath tests (see enclosure).


Day 2

➢ Standard procedure : Tuesday 2nd breath test for fructose intolerance, again between 8h and 8h30 (nil by mouth). This test takes also 4 hours.
Blood tests can be done during the fructose or lactose breath test.
An effort test can be taken in the afternoon (you are allowed to eat before this test).
End of tests.


The results will be sent by post 1 month, at the earliest, after this procedure.

With “standard procedure” we mean that the necessity of these tests depend on your first consultation with Prof. Dr. K. De Meirleir.





OVERVIEW COSTS


First consultation 70 €

Second consultation 50 €

Breath test Lactose 90 €

Breath test Fructose 90 €

Food allergy test 160 €

Electrocardiogram + effort test 125 €

Echocardiogram 60 €

Blood tests 2000 €




LACTOSE AND FRUCTOSE BREATH TEST


A hydrogen breath test is performed to prove or to exclude a dysfunctional absorption of sugars (intolerance). This intolerance correlates with a low concentration of a particular enzyme, which is necessary for the digestion of sugars. If the lactose / fructose has not digested, certain bacteria use these sugars for their metabolism. This produces a residual product: hydrogen (H2). The amount of hydrogen can be measured in the exhaled breath. If the amount of hydrogen rises significantly after you have drunk lactose / fructose, this shows an intolerance.

The examination consists in taking a breath sample each half hour (exhale in a tube). The test is not painful and lasts about 4 hours.

How to prepare yourself for this test?

• The day before the examination:
- Avoid food with a lot of fibres (brown bread, bran, pasta, chocolate, spicy sauces, muesli, fruit and vegetables) and candy (such as chewing gum)
- Do not take food or beverage in the 12 hours before the test (water is allowed) → fasting from 8 PM (20:00) the previous evening

• The morning of the examination:
- Be on time at our center
- Do not smoke before and during the test (as from midnight)
- No strenuous exercise before or during the test
- Do not eat food nor sweets before or during the test
- Do not sleep during the test

If you recently had diarrhea or if you have taken antibiotics in the week prior to the test, please inform us before undergoing the test. This may be a reason for postponing the test.

During the test, you can wait in the waiting room. Please bring some reading material.

 

[Sushi]

Hi RRR and all,

I think that they have not updated this for a while. KDM doesn't seem to ask for an exercise test for anyone who is XMRV+ (actually haven't heard of any others recently who have had them.)

They don't mind if you opt out of the fructose and lactose breath tests--if you already know you react. We opted out partly because we didn't want to be fasting during our appointment with KDM as we wanted as much of our brain available as possible and low blood sugar and lack of caffeine would not have been an asset.

He also didn't do an electrocardiogram on any of the bunch I went with--though I think most of us had recent ones in our medical records. And he did request endoscopy/stomach biopsies for 2 of us. If he requests this, they try to schedule it close by but it could mean another day in Brussels. The trick with getting one done in your own country is that the tissue has to be sent to Belgium frozen in dry ice.

Sushi

 

[Rrrr]

Hi, Tony.

Thanks for that information. I'm very happy to hear it, and I hope it pays off for you.

Best regards,

Rich

rich, which supplement is the active folate again?

 

[Sushi]

I think a couple of us are beginning to see a pattern with our response to GcMAF--though it is still early days. For the first 2 or 3 days after the injection, we don't notice anything. Then we feel progressively worse until the day before our next injection when we feel OK again.

Guessing that the macrophage numbers and activity reaches it's peak about 4 days after the injection and that is when we feel our worst.

Is anyone else noticing a pattern--like this or any other? Again patient power may identify things that haven't come out in research. We are our own study!

Sushi

 

[garcia]

I think a couple of us are beginning to see a pattern with our response to GcMAF--though it is still early days. For the first 2 or 3 days after the injection, we don't notice anything. Then we feel progressively worse until the day before our next injection when we feel OK again.

Hi Sushi. I would say this pretty closely matches what I've been going through too.

 

[froufox]

Hi Sushi,

I've noticed something similar in that i definitely feel worse a few days after my injection, thats been quite noticeable, but i do also feel bad the day after my injection too, so overall im pretty up and down throughout the whole week. But have def noticed an obvious worsening a few days later yes. As u say it would tie in with the boost in macrophages at that time.