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

[hoop]

Warning: Anecdotal!

Some of us have been wondering if taking LDN reduces some side-effects to GcMAF. Since only a few of us here are taking both, I posed the question on the Dutch forum. One answer so far (hope no one minds me reposting here!)

Sushi

Hi Sushi,

How much LDN do you take? 4.5 mg? How long were you using LDN before you started GcMaf? Did you have negative sideeffects in the beginning you were using LDN? What symptoms of your CFS did improve by using LDN? Thanks very much. Hoop.

 

[serg1942]

Hi all,

As far as LDN and GcMAF, I thought it would be a good idea to re-post here (see the quote below) a message I wrote a few days ago in another forum.

As far as Nagalase, I was tested by Redlabs for it, 8 months ago (before starting GcMAF), but I still have not the results, as they told me it was still an experimental test that they were tuning. By then it was a free test.

Interestingly it is not a free test anymore (they charged it last week to a friend of mine), what makes me think that it is already available, and therefore my test must be ready (I see KDM on July 19th, so I wont know the results, if any, until then).

And, as for the Nagalase levels in CFS concerns, a patient of Dr. Cheney who posts here too, explained how he told her that the PWCs he had tested so far showed HIGH Nagalase levels, indeed very high, and that GcMAF effectiveness highly depended on its levels (if they were too high, it didnt work).

Hi Guys,

I would like to chime in here to explain briefly my experience:

LDN saved me from I dont know what I was getting worse and worse, losing weight dangerouslyAll this after a cyanide toxicity from taking large doses of CyanoB12 I was 100% bedridden, and had been a few years without leaving home other than for doctors visits.

It took me about 5 months to reach 4.5 mgs (my current dose), and Ive been taking this amount for almost 2 years, with the benefits I got being stable.

The benefits I got from LDN were mainly gain of weight (I was too thin), significant reduction of brain fog, being better in the mornings, less PEM (LDN makes me sleep more in order to recover from efforts), and more stamina. Also it hugely reduced my excitotoxicty and allowed me to start doing progressive anaerobic exercise, that I still practice.

Here is a very shocking image that I composed in order to show my doctor my improvement, that shows at least how the change looked like physically:
http://www.sfc-em-investigacion.com/viewtopic.php?p=1845#p1845
Of course LDN is not a cure, and probably it improves many PWCs because it downregulates the chronic activation of the immune system that is thought to cause many of our symptoms (important to remember here that LDN was shown to stop HIV replication). Whatever it is, I can say that thanks to LDN I went from being bedridden to be housebound, with the possibility of driving again, going out every few days, normally to do some errands, etc.

Now my main concern: I am on GcMAF right now (18 shots so far), and I am getting significantly betterI still have a looooooooooong way to go though. However, I cannot know whether LDN is the perfect allied to GcMAF, as it counteracts the inflammation produced by the latest, or rather, it may be preventing GcMAG from fully working (I think I will lower the dose of LDN VERY slowly and see how I feel).

An idea for those who are looking for a doctor to prescribe LDN, is to show him/her the study that demonstrated that LDN improved Fibromyalgia symptoms an average of 30% more than those under placebo, within only 2 months. So, if you have been also diagnosed with FM, this may be a very wise way to convince the doctor, specially highlighting how tiny are the doses involved, considering that Naltrexone has been shown safe for dosages 10-20 times higher

Saluditos,
Sergio

 

[serg1942]

Thanks Sushi for posting the message of this German patient. Oh God, I hope they are not refraining themselves from posting here b/c of their English... They should know how's the level of English in Spain!!! Please, write again encouraging them to post here!!! If I can, they can!!!:victory:

Sergio

 

[vli]

Hi all,

As far as LDN and GcMAF, I thought it would be a good idea to re-post here (see the quote below) a message I wrote a few days ago in another forum.

Hi Sergio when you say you still have a "loooong" way to go... at what percentage of "normal function" would you say you were before gcmaf, and at what percentage would you say you're at now?

 

[serg1942]

Hi Vli,

The problem is that I recently took antibiotics, then I added Liposomal GSH, and also have reduced a bit LDN. In adittion I have been pushing myself way too much organizing a Spanish national Congress, so, I have to say that I have been 9 days much worse than I was.

Its difficult to say though, because I have ups and downs, and my body is adjusting to all the changes as I have said. Even more, tomorrow I start a new drug for the gut that I will probably react to it at the beginning, and in a few days I have to take Penicillin for 5 days

So, all in all, considering everything, I can say that, if I dont take into account the last 9 days, when I am paying the effort of the congress, I would say that before GcMAF I was at my 15% the worse days and at my 40% the good days), and just 9 days before, after 17 shots of GcMAF I was at my 30% the bad days and at my 60% the good days

But also it goes for hours instead of days I mean, I remember a few days when I was almost at my 80% for 5-6 hoursI definitely had not felt that good since I am sick, so even though the change seems not to be super, the sings are encouraging

I just hope to recover that stability soon, b/c right now I am a few notches below the level I was 2 weeks ago.

Un abrazo,
Sergio

 

[froufox]

Hi Serg,

I know what u mean about the ups & downs, but glad to hear things are encouraging overall. I had a pretty good day yesterday energywise at least, i went out and walked for about an hour and felt pretty strong...had not done that for a while. But today ive totally crashed again, i guess partly because i did too much yesterday!

Anyway I just wanted to ask u about your gut results...i remember u said u had prevotella infection is that right? So did i...mine was 50 (ref <10) but KDM has just recommended probiotics to me, aswell as oxygen, not abx curiously. So i just wondered what your result was for the prevotella, if u wudnt mind sharing?

Cheers!

 

[Sushi]

Hi Serg,

Anyway I just wanted to ask u about your gut results...i remember u said u had prevotella infection is that right? So did i...mine was 50 (ref <10) but KDM has just recommended probiotics to me, aswell as oxygen, not abx curiously. So i just wondered what your result was for the prevotella, if u wudnt mind sharing?

Cheers!

Hi Froufox,

It is Sushi butting in! Cause I also had Prevotella at 93.1%! Sounds like it is "winning" this game--not "me!"

KDM also gave me ABX and I am on my second day and really feel much better--clear head (well relatively). Maybe he only gives ABX for really high overgrowths?

I'm having to hunt all over the world to fill some of his prescriptions, but finally have it all ordered. The US prices are ridiculous!

Glad you had a good walk--even if you crashed the next day. You did it! That is good.

Best wishes,
Sushi

 

[froufox]

Thanks Sushi, sorry your results were so high! Glad you're feeling a bit better from the abx tho, hope that it helps u make further progress! I think that you're probably right and would make sense that perhaps he only treats people with a high load. I might write to the clinic anyway and ask. I had been taking a lot of probiotics for a couple of months prior to the stool test so I wonder if that made a difference.

Sorry the US prices are so high for the stuff u need, but glad u got it all sorted now.

Yeah it did feel really good to be able to walk for so long without crashing afterwards, even tho i crashed dreadfully today! lol It was still obviously too much for me to cope with. Oh well onwards and upwards!

Take care, frou

 

[Spring]

KDM also gave me ABX and I am on my second day and really feel much better--clear head (well relatively). Maybe he only gives ABX for really high overgrowths?

I'm having to hunt all over the world to fill some of his prescriptions, but finally have it all ordered. The US prices are ridiculous!

@ Sushi: can you tell me on which antibiotics you are? I just got Rifaximin prescribed, but can't find experiences with it yet.

 

[Spring]

On the dutch forum there was a brief report of someone who attended the Invest in ME conference. Dr. De Meirleir told 68 of 108 people treated with Gc Maf had considerable improvement. Can't tell you if he talked about high or low responders or other explanations why the others didn't respond well or if they did not respond at all.

Spring

 

[Berthe]

Lots of smart people here on the forum. For some time I'm trying to find the answer to the following question; In all the scientific papers about the clinical trials with MAF concerning HIV and Cancer there was a a protocol of a certain amount of administered injections (IV) with a full dose. This varied, but let say it would be 20 weeks... would this mean that taking 1/4 doses take four times as much injections to get the ideal result? Would this mean that I need 80 injections? And what is the influence of being a high responder?

Love,
Berthe

PS I'm actually very curious to find out how my body reacts to a treatment when the MAF is out of my system and I'm not longer experiencing the side effects. So far I've had 13 injections.

 

[Sushi]

@ Sushi: can you tell me on which antibiotics you are? I just got Rifaximin prescribed, but can't find experiences with it yet.

Hi Spring,

I hadn't wanted to give me specific ABX because they are not something that can be copied from one to another. There are so many individual considerations, drug interactions and allergies etc.

So, with that caveat (please don't ask your doc for the same ones!) yes, Rifaxamin is one of the harder ones to get. It is Xifaxin brand in the states and my 16 tabs sell for $400! I have found it generic in a Canadian pharmacy (also posted this on the Dutch forum) in either 200 or 400 mg tabs. The prescribed 550 mg is not available generically. I wrote in to KDM to ask if I could utilize the generic and he changed to dosing so I could. It is available at the Belgian pharmacy in the same doses.

I take it next month, so no results yet. This month it is Paromomycin--I am allergic to penicillin.

Sushi

 

[Sushi]

Lots of smart people here on the forum. For some time I'm trying to find the answer to the following question; In all the scientific papers about the clinical trials with MAF concerning HIV and Cancer there was a a protocol of a certain amount of administered injections (IV) with a full dose. This varied, but let say it would be 20 weeks... would this mean that taking 1/4 doses take four times as much injections to get the ideal result? Would this mean that I need 80 injections? And what is the influence of being a high responder?

Love,
Berthe

PS I'm actually very curious to find out how my body reacts to a treatment when the MAF is out of my system and I'm not longer experiencing the side effects. So far I've had 13 injections.

Hi Berthe,

Here is my understanding of this question. The studies were not done one ME/CFS patients. Originally KDM and others were giving the doses in the study. Experience has shown that ME/CFS patients usually do better on lower doses and it can be a strain on the body to take too high a dose and get a lot of side effects. So, you would not have to take 4 times as many doses--just the dose that is right for you until you and your doctor feel you have reached the best response that you will.

The number of doses you take will still probably be affected by your responder level--and now I am beginning to hear that your initial nagalase level might help predict that as well. There are likely other factors that could influence it too.

Best,
Sushi

 

[Vojta]

I got my results yesterday. I'm XMRV negative in all 3 kinds of tests and FOK1 moderate responder, BSM1 moderate to low responder. However I feel better after 6 shots of GcMAF. I guess GcMAF is useful medication not only for XMRV positive patients. But still I don't know if I can completely trust these XMRV tests now. My blood was drown for nagalase test before treatment so in future we will see possible impact of GcMAF treatment.

 

[leaves]

Berthe! How are you doing? feeling ok??

 

[froufox]

Hi everyone,

I just wanted to ask if anyone has been prescribed oxygen via a tank by KDM? He's recommended oxygen for me for 4 hrs a day. If so, has anyone outside Belgium, esp in the UK, got their oxygen tank via the oxycure website (the one that KDM uses)? If not, how did u get hold of your oxygen? Has anyone got it on the NHS?

Cheers

 

[Spring]

So, with that caveat (please don't ask your doc for the same ones!) yes, Rifaxamin is one of the harder ones to get. It is Xifaxin brand in the states and my 16 tabs sell for $400! I have found it generic in a Canadian pharmacy (also posted this on the Dutch forum) in either 200 or 400 mg tabs. The prescribed 550 mg is not available generically. I wrote in to KDM to ask if I could utilize the generic and he changed to dosing so I could. It is available at the Belgian pharmacy in the same doses.

Hi Sushi,

I found generic Rifaximin 550 mg at a belgium pharmacy, De Saedeleer for a reasonable price ( 98 for 32 tablets). I'm curious of your experiences with this antibiotic, but thats kind of 'off-topic' here.

Spring

 

[Berthe]

Hi Leaves,

Thanks for asking. Feeling better every week. From being bedridden from september til the end of february with everlasting low grade fevers, the Gc MAF brought some relieve. Once a week I do some groceries and two times a week I make dinner, so this is real progress. I'm finetuning the Gc MAF, because I'm not only a high responder but I also have abnormal PrPc testing and therefor the side-effects kick in heavily. I have to find the balance between enough Gc MAF to be effective and not getting worse/falling apart.
I'm looking forward to the future and hope to regain another 20 to 30%.

Love,
Berthe

 

[vli]

Hi everyone,

I just wanted to ask if anyone has been prescribed oxygen via a tank by KDM? He's recommended oxygen for me for 4 hrs a day. If so, has anyone outside Belgium, esp in the UK, got their oxygen tank via the oxycure website (the one that KDM uses)? If not, how did u get hold of your oxygen? Has anyone got it on the NHS?

Cheers

Froufox, I've been prescribed 5 hrs/day by KDM. I tried to get it on the NHS last year when I was having such a bad migraine that I went to Kingston Hospital on a Saturday but was told I would never, ever get it prescribed to me for that reason, so I'm pretty sure trying to get it on the NHS by shoving KDM's letter to them would be near impossible. I didn't even know KDM used a website. I live in Hong Kong most of the time so I order it through a medical supplier here. I was getting it from them anyway before KDM to make ozone for ear insufflations.

 

[froufox]

Thanks for replying vli, sorry they refused u at Kingston, no surprise there i guess! I guess i could always try asking my GP anyway but I dont have high expectations! I have a feeling they only supply oxygen based on the results of particular tests that show low blood oxygen, which as far i know wasnt in the testing i had with KDM. Unless i missed something. Do u know why KDM prescribed oxygen to u?

The oxycure website is the one that KDM's secretary told me about, so i'm guessing thats the company that they normally recommend people get their tanks from...its not their website as such and I dont know if KDM has any direct link to them.

Also just wanted to ask since u mentioned doing ozone, did u swap from doing ozone insufflations to doing oxygen as per KDM's recommendation? If u did, how would u compare them? And if you're doing the 5hrs a day treatment, is it helping u much?

Thanx a lot and i hope things are going well 4 u.