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

[Lou]

I'm pretty sure the benadryl I took(for iris problem) one hour before gcmaf treatment washed out the treatment. Apparently most medicines interfere with gcmaf and next time I'll just put up with the iris symptoms rather than waste the treatment. For what it's worth.

 

[bertiedog]

I am very fortunate that I live in south-east England and my son is in the process of buying a flat at Ebbsfleet, 5 minutes away from where Eurostar goes to Brussels.

I am having to take antibiotics yet again because my throat has got so bad again, its about the 6th time since December I have been on them.

On Monday I am going to email KDM and ask what tests he thinks I should have although of course I know I am positive for XMRV. I have had a lot of blood tests done recently from my GP so I will include these but guess they aren't very helpful.

Thanks for your replies.

Pam

 

[Sushi]

On Monday I am going to email KDM and ask what tests he thinks I should have although of course I know I am positive for XMRV. I have had a lot of blood tests done recently from my GP so I will include these but guess they aren't very helpful.

Pam

Hi Pam,

I don't think you will get a reply from KDM about what tests to take. More likely you will get a standard letter from his secretary which doesn't seem to be up do date. As long as you are XMRV + he is likely to start treatment but he will want to select specific tests himself once he has talked to you and looked at your medical records. We saw him on Monday, he took our medical records home that night and on Tues had prescribed the tests he wanted done. He did start us on GcMAF on Tues as we were XMRV + but we won'd get the rest our our protocol till the second visit after our tests are all in.

Hope that helps!

Sushi

 

[bertiedog]

Hi Pam,

I don't think you will get a reply from KDM about what tests to take. More likely you will get a standard letter from his secretary which doesn't seem to be up do date. As long as you are XMRV + he is likely to start treatment but he will want to select specific tests himself once he has talked to you and looked at your medical records. We saw him on Monday, he took our medical records home that night and on Tues had prescribed the tests he wanted done. He did start us on GcMAF on Tues as we were XMRV + but we won'd get the rest our our protocol till the second visit after our tests are all in.

Hope that helps!

Sushi

Thanks Sush that is helpful. I take it that you sent back on the Tuesday? I was hoping I would only have to see him for one day and then go home.

Pam

 

[Berthe]

Hi there,

Does anyone of you knows what medications interfere with Gc Maf and Why? I just read about painkillers and bloodpressure medication interfering with Gc Maf. I wanted to know if there is a scientifically based evidence in a paper or article, or is it just speculation based on personal experience? Due to the fact that so many Belgium and Dutch patients seem to get horrific side effects caused by the pro-inflammatory cytokines, like pain in muscles and joints, terrible headaches, pain in neck, being feverisch etc... I decided to do some research of my own. Has anyone a clue where the painkiller story comes from and more important how it interferes?

Love,
Esther

http://www.onwilliglichaam.blogspot.com

 

[lobba123]

although probably unknown i would add also if it is known about antivirals interference like nucleotides/nucleosides, these lower inflammation for sure on viral diseases but might also lower immune response

Hi there,

Does anyone of you knows what medications interfere with Gc Maf and Why? I just read about painkillers and bloodpressure medication interfering with Gc Maf. I wanted to know if there is a scientifically based evidence in a paper or article, or is it just speculation based on personal experience? Due to the fact that so many Belgium and Dutch patients seem to get horrific side effects caused by the pro-inflammatory cytokines, like pain in muscles and joints, terrible headaches, pain in neck, being feverisch etc... I decided to do some research of my own. Has anyone a clue where the painkiller story comes from and more important how it interferes?

Love,
Esther

http://www.onwilliglichaam.blogspot.com

 

[cansado]

i leave april 9 for kdm. i hope i'm not too sick to go!!!!

a few questions about the hotel EuroVolley where many of us have or will stay for a KDM visit:

- i will likely have to sleep on the floor in a sleeping bag. are the floors rugged/carpeted or cement?
- does EuroVolley offer a "wake up call" (a phone call instead of an alarm clock)?
- how far a drive is it to KDM's clinic from Eurovolley?
- when do i need to request the shuttle/ride from Eurovolley to KDM's clinic, at night or the next morning?
- what are the restaurant hours?

separately, has anyone bought travel insurance in advance of their trip from the USA, in anticipation of (in case) they were too sick to travel, and were able to get their money for the flight back?

any help with any of these is helpful!

rrrr

Rrrr,
Did someone answer your questions? I can, but on Tuesday when I am back in BE.
I can't go through all the messages of the past week right now.
Please let me know.
C.

 

[Flora]

Hi,

I haven't heard of any medication that would interfere with GcMAF! On internet I can't find any info regarding that.
Couldn't it be that those side effects are a result of I.R.I.S.? On gcmaf.eu there's an explanation of this.

Quote: "The analysis showed that the individuals who developed IRIS had a higher proportion of activated T cells before starting antiretroviral therapy compared with those who did not develop IRIS. These activated T cells had the propensity to make a key infection-fighting molecule called interferon gamma both before therapy began and during IRIS episodes, suggesting that the cells may participate in the exaggerated immune response seen during IRIS."

And if I then lookup what the side-effects are of interferon gamma... (Is sometimes used by certain diseases.)
Side-effects: Very often: fever, headache, chills, rash. Often: nausea, vomiting, abdominal pain, diarrhea, depression, muscle- and joint pain, back pain, fatigue. Rarely: confusion, SLE, auto-antibody response.

But I'm not a docter or a medical professional. I'm just thinking out loud....

But there are indeed interactions according to the pharmacotherapeutic compass!

Quote:
"The metabolism of drugs via the CYP450 enzyme system may decrease.
Combination with neuro-, hemo-or cardiotoxic substances, can strengthen the toxicity.
Co-administration with serum protein preparations, immunological preparations (eg vaccines) should be avoided because of the likelihood of an enhanced immune response."

That raises the question: what do they mean with "The metabolism of drugs via the CYP450 enzyme system may decrease." I think after googling that they mean this:
Quote:
"This so-called CYP-450 enzyme system is involved in the degradation of various drugs and this degradation can be accelerated or even inhibited by other substances in question or even inhibit enzyme induction."

I hope I didn't talk nonsense and that this will help you a little further.....

love Flora

 

[lobba123]

http://www.replicor.com/debut_anglais2.htm

just good info to share

since i maybe able to take part of a trial with this compound already tested on humans and safe, and since it is the largest Broad Spectrum and most potent antiviral ever discovered, it would be good to show this to KDM as well.
of course like gcmaf it has no intrest for industry but they are quite open to supply it to researchers, it is probable it has activity on XMRV too

hbv gets eradicated by 2 weeks when comboed with current antivirals so potency is quite impressive

 

[Rrrr]

I'm pretty sure the benadryl I took(for iris problem) one hour before gcmaf treatment washed out the treatment. Apparently most medicines interfere with gcmaf and next time I'll just put up with the iris symptoms rather than waste the treatment. For what it's worth.

thank you, lou, for this report.

i, too, have heard that many meds interfere with the effectiveness of gcmaf. i hear it is best to not take any meds 3 half lives away from your gcmaf treatment. and not to take any supplements the day of your gcmaf treatment.

 

[Rrrr]

Rrrr,
Did someone answer your questions? I can, but on Tuesday when I am back in BE.
I can't go through all the messages of the past week right now.
Please let me know.
C.

yes, i heard the answers to most of these! thanks!

 

[Sushi]

Thanks Sush that is helpful. I take it that you sent back on the Tuesday? I was hoping I would only have to see him for one day and then go home.

Pam

Pam,

They usually want new patients to stay 2 days unless you are able to take two trips to Brussels within a short time--one for the appointment with KDM and another to have blood taken and do other tests. It might be easier to stay 2 days. Also, they almost always want a stool sample so you might have to ask for the kit to take with you on the first day.

Sushi

 

[anniekim]

I think that KDM believes that the main problem is in the gut. ME/CFS patients develop a compromised immune system due to gut dysbiosis and toxin transfection from gut to blood. It is pointless treating the xmrv if you don't get to the bottom of the problem first, thereby boosting the immune system..

Sorry I am very ignorant on these matters. Is KDM then saying that it's our gut dysbosis that makes us susceptible to virus' such as XMRV?

Also would treatment mean restricted diets for ther rest of our lives, or just whilst the gut heals? I'm hopeless at restricted diets and the thought of having to follow one for years (even months) is very demoralising for me. Giving up sugar being the main problem for me.....

Many thanks in advance

 

[aquariusgirl]

Does anyone know if KDM has refused to give gcMaf to anyone? or withheld it pending certain test results?

Thanks

 

[Charles555nc]

Is there anyone affordable (cheney costs several thousand dollars for just the starting appointment) who is working with KDM in the United States?

 

[Nabo]

a lot of people i know form my dutch forum are reacting very bad on gc maf.

Almost everyone is now back to 1/5 dose!
They have a lot of sideeffects, such as strong headache and other pains.

Me included!

 

[Flora]

I'm still on full dose! I feel bad (pain, fatigue, cold chills) for two days after injection and then it slowly fades out.... So I can't say that from the 150 or more people everyone is reacting very bad on GcMAF! Problem is people who are doing well, don't report this I think....
But I'm sorry to hear you have a bad reaction to it Nabo! Wish you well!!!!

love Flora

 

[filfla4]

Sorry I am very ignorant on these matters. Is KDM then saying that it's our gut dysbosis that makes us susceptible to virus' such as XMRV?

Also would treatment mean restricted diets for ther rest of our lives, or just whilst the gut heals? I'm hopeless at restricted diets and the thought of having to follow one for years (even months) is very demoralising for me. Giving up sugar being the main problem for me.....

Many thanks in advance

I don't believe the cause for XMRV has been identified, nor how it is transmitted. However since 70% of the immune system is in the gut, it is important to heal any problems there, to ensure that the immune system is functioning properly to control any opportunistic infections.

About diet, KDM works closely with a nutritionist, Christine Tobback. Her diet for me was very rigid to begin with (see posts earlier in this thread). I believe that as the gut begins to heal one can start to introduce other things, subject to allergies etc.

At the beginning, I found the whole process extremely daunting and I had no idea how I was going to stick to it, particularly as you say, cutting out all sugar. The nutritionist assured me that the sugar cravings would stop as I cut out other bad things in my diet, and sure enough they did!!!! The only sweet thing I am allowed is rice syrup which can be used to sweeten drinks or as a spread. In the first month or so I consume quite a lot of it however now, I'm not even craving that!! My stomach just feels sooooo much more comfortable.

About GcMAF, I am a high responder and am now about to get my 11th shot. I am still taking a full dose. In the first two months my reaction was immediate and pretty difficult to cope with. The next day after taking the shot I would be wiped out with no energy, headaches and a lot of neurological symptoms. This would improve by the second day, but I would be still unable to function. By the 3rd and 4th day my energy levels would pick up that pretty soon I would have a few good days where I could do far more than I was doing before beginning the treatment. Now, the reaction is not as bad although still very much there. I am functioning probably around 60-70%. I have been told that I would probably need to be on the GcMAF for a total of 20 to 30 weeks, and on the Nexavir for a full year.

 

[garcia]

I am functioning probably around 60-70%.

Hi filfla, is that 60-70% of where you were before you started GcMAF?

Or do you mean you are currently at 60-70% of normal?

many thanks,
g.

 

[garcia]

a lot of people i know form my dutch forum are reacting very bad on gc maf.

Almost everyone is now back to 1/5 dose!
They have a lot of sideeffects, such as strong headache and other pains.

Me included!

Thanks for the update Nabo, it is much appreciated! I am like you, have reacted very strongly to the gcmaf. Have had to lower to 1/4 dose. Still getting side effects.