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

[Rrrr]

i am sorry to read how hard the gcmaf journey is for some of you!!!! i'm so sorry! i will start it, i hope, next week. i will see KDM on Monday, april 11, if all goes well with my health and the flight from the USA. i will do the breath tests and the stool test.

STOOL TEST
does anyone know if i am not to eat certain foods before the stool test? or not to take any meds? they told me just to stop probiotics 1 week before the test. but i have also stopped my nystatin and cholesteryamin (spelling?) and apple cider vinegar a week before the tests, all of which impact fungus and molds in the gut. but i wonder if i should not eat certain foods before the stool test, too? does anyone know? [UPDATE: THEY JUST SENT ME AN EMAIL THAT SAID, "You do not need to avoid certain food."]

BREATH TESTS
the instructions kdm's office sent me were this: "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)." soooo, if i am to avoid fibres, fruit and vegetables, what the heck CAN i eat?

best,
rrrr

 

[Rrrr]

IRIS

do we have any idea why so many of us are reacting badly to the gcmaf? is it IRIS?

here are a few IRIS articles:

http://www.cfscentral.com/2010/07/haart-and-iris.html

and

http://www.bing.com/health/article/...q=immune+reconstitution+inflammatory+syndrome

and a reminder (this was posted earlier) that we were hearing thru the grapevine that a well respected cfs doctor (not KDM) thinks that we could treat iris by:

- blocking all three histamine receptors -- H1, H2, and H3 -- as histamine is a major player in inflammation.

- so Benadryl, Zantac and Tagamet, or the generic equivalents, could help.

- i have heard that mild IRIS symptoms could be addressed by Benadryl (25 mg) or Tagamet (200-800mg) or Tylenol (500 mg) given singly or together.

- i have also heard that continuous problems over time might respond better to Allegra at 60 mg BID or Cortef at 10mg QID for a few days up to a week. i have also heard that Cortef should be considered if the IRIS symptoms are severe.

- other patients had suggested that high doses of Curcumim, and 500 mg of niacinamide may help.

 

[anniekim]

@Dan

KDM works closely with his nutritionist Christine Tobback. They're about to publish a book together. I had a 2-hr consultation with her in January and she put me on a rigid diet which I will try to outline in point form. It's almost 1am here so if I don't get it all down clearly or you have any questions, feel free to ask!

- My diet is dairy free, low in gluten, low in fructose, low in salicylates and low in histamines
- I am also allergic to eggs
- Sugar is out completely and the only sweet ingredient is rice syrup which can be used as a spread or even to sweeten drinks
- I use rice milk or soya milk
- No seasoning, herbs, spices, sauces, stock cubes are allowed. Only salt and good quality olive oil can be used to flavour food.
- All food has to be taken together with "good" fat: ie drizzled with generous quantities of olive oil or a non-dairy margarine spread
- No caffeine or alcohol is allowed
- No pre-prepared meats, hams, bacon. No smoked meats or fish.
- Think "clean" simple food, grilled or steamed and not elaborate stews or sauces.
- Boiled white rice seasoned with salt and drizzled with olive oil is recommended.
- I eat a lot of steamed fish or grilled chicken, occasionally grilled beef (don't forget to drizzle with olive oil!)
- Occasionally potatoes, always peeled. (Believe it or not fries are ok, occasionally!)
- Veg: mostly greens lightly cooked and always drizzled with olive oil. Carrots, peas and and other high fructose veg are out.
- Fruit: berries are best but for example I can have an apple if I split it up and have half in the morning and half in the evening
- no fruit juices
- beans, pulses and other legumes are out. Chick peas are ok occasionally
- gluten-free bread, rice crackers are ok
- a weekly treat is a small portion of potato crisps - only salted and no other spices/seasoning
- it is important to vary the type of food you eat and not to stick to the same ingredients
- you can be creative in baking eg scones with gluten-free flour, rice syrup and margarine
- quinoa is great and high in protein and you can flavour this up with a few veg

Can't think of anything else right now. I was quite shocked by this regime to start off with but then I quickly got used to it. I stuck to it rigidly for six weeks and then started slowly introducing a few things here and there, after a second consultation with Tobback. She is quite insistent about drizzling all food with a good quality olive oil, or using marg. For example I used to eat rice cakes on their own - she says no, much better to spread them with a non-dairy margarine as it helps to digest them.

Let me know if you need any clarification.

Blimey, that is so ooo strict, no herbs, no stock, yikes. Congratulations on managing to follow it. I remember years ago when candida diets were all the rage for M.E. i tried to follow it for three months, nearly killed me, was so hard. If I was fairly certain that this diet would improve my health, I think I could just about manage it, but I'm not certain, so don't know whether I have the strength to do it. But absolutely hats off to those who are managing it.

 

[aquariusgirl]

garcia, can you elaborate on the side effects?

I noticed berthe saying the same thing about patients having a hard time with it...It kind of amazes me that KDM doesn't have a better protocol for IRIS. HE just hands it over and cuts you loose...it looks like.

 

[Sushi]

Hi Everybody,

Nabo, sorry to hear that there are quite a few on the Dutch forum having a hard time on GcMAF. I'd tend to say I have a "strong" reaction, rather than to say a "bad" reaction. I think what I am feeling is the GcMAF working.

I have reduced my dose to half till I get through the travel back to the States as I have to be functional to see KDM and to travel.

I don't think I have had an IRIS or inflammatory response, but I'd guess it is because I am also taking LDN which should help a lot with inflammation. My "hard" days feel more like I am drained of energy and have a mild headache. But I can be in bed for a whole day and then feel fine the next. The reaction seems to pass quickly and then I have more stamina than before I started GcMAF.

As far as IRIS, the protocols suggested here should work. I take an anti-histamine but don't seem to need to take the other things.

Charles, I don't know of any US doctor who is officially working with KDM, but he might be open to a doctor approaching him about it. He certainly has a lot of contacts in the States.

I had my 11th shot yesterday and today am feeling it, but only lethargic and a slight headache. My week is an up and down with about half the days "good" and the other half "not so good" and occasionally a bed day.

Sushi

 

[Nabo]

Thanks everybody!

I have read a lot about IRIS, but i dont know exactly what it is.

Is it something i could have?? And then what??

And another question:
The last few months, i cant take any drugs (like ibuprofen, diclofenac, paracetamol, tramadol) because i think i am drug-sensitive.

If i take one of these drugs i get all the side-effects.
It is very scary, but at the same time i have so much pain i need medication.

But i cant take it beacause of the drug-sensitivity
Does anyone know something about this?????????

 

[girlinthesnow]

The strict GF CF low fructose histamine free diet is to help control inflammation. It is very tough but so is being sick for decades.

 

[davidnoakes]

Nabo: Is your GcMAF GcMAF?

Nabo said:

" 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! "

Have you been shown there are independent sterility, activity and identification assays on your GcMAF?

If not, it is probably not GcMAF, and that is why you are getting headaches and pains.

As for IRIS, you can read about it at (link removed) , click "List of Research" at the top, IRIS is the 6th item down.

Best wishes

David Noakes.

 

[ukxmrv]

Girlinthesnow,

Being sick for decades and trying lots of different diets is also very hard. Just something to remember when we try unproven things. Helps with the terrible disappointment for me and reminds me of all the things that I have tried before at enormous personal cost. Tried many diets including strict ones as above.

Just my own way of coping with the terrible failures in treatment. The viewpoint may not help all and we all cope differently to this.

 

[Rrrr]

i am xmrv+, about to head to KDM for (i hope) GcMAF next week. in addition to the normal baseline testing, i've decided to do some fancy tests pre and post-gcmaf treatment, to see if i get any improvements on my lab results.

so i tested for nagalase at Vitamin Diagnostics in New Jersey (http://www.europeanlaboratory.nl/) ($65)

and

i did the "mini-cytokine" panel from WPI's lab (called VIP). the "mini-cytokine" panel test is technically called the "NKCP & LYEA WPI" ($225). here are the results from that test, pre-GcMAF treatment. if anyone can help me understand it, please do. i have yet to wrap my head around the whole natural killer cells thing, so i'm in the dark.

Flow Cytometry Report
C19A - normal, in reference range
CD19 - normal, in reference range
CD4 - normal, in reference range
CD45 - normal, in reference range
CD48 - normal, in reference range
CD4A - normal, in reference range
CD8 - normal, in reference range
CD8A - normal, in reference range

NKC1: %NK cells in blood (CD16, CD56+/CD3-)
abnormal results: 3.35 (normal range is 6-20%)

NKC2: % Specifid cell lysis
results: 16.8 (normal range is 6-20%)

NKC3: % Lytic Activity
abnormal results: 50.2 (normal range is 3-33%)

NKC4: %T Cells in blood (CD3+)
abnormal results: 83.69 (normal range is 45-76%)

NKC5: Total T-Cell (CD3+) Absolute count
results: 1310 (normal range is 750-2310/cmm)

NKC6: NK cells (CD56+) Absolute Count
abnormal results: 50 (normal range is 120-410/cmm)

NKC7: NK-T: NK Ratio (the ratio of CD3+/CD56+ (NK-T) cells to CD3-/CD56+ (NK) cells)
abnormal results: 0.44 (no reference range given)

 

[girlinthesnow]

Ukxmrv, I'm not sure what you mean in your post. I have been sick for decades and I have done many diets. Are you saying that this is also true for you or something else?

 

[ukxmrv]

Thanks girlinthesnow for asking. Very kind.

I meant just me personally. The double whammy of being ill for decades, of having done hard diets (often and seriously) and being left worse off is really painful for me. The disappointment and the further struggle to recover from them.

 

[aquariusgirl]

hi rrr
is that last number right? my NKC 7 is 4.24. also abnormal.
my NKC 4 was abnormal. 79.45,
my NKC 3 lytic activity was normal... but just barely ...10.3
my cd4a was high out of range.
and on a separate panel, my IL8 was super high too. 20x the upper end of normal.

 

[mojoey]

I added a HLA-DR category to the public GCMAF spreadsheet https://spreadsheets.google.com/ccc...V2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0:

What is your HLA-DR genotype? (multisusceptible, mold, chronic lyme, dinoflagellates, MARCoNS, low MSH)

I thought it'd be interesting to see if multisusceptible and mold-susceptible genotypes have a correlation to negative reactions to GCMAF. I have the "dreaded" multisusceptible 4-3-53 genotype

 

[Charles555nc]

What are the people saying (on the dutch forums or otherwise) about GcMAF, who have been on it the longest?

How reduced their symptoms are, how much a reaction they get to the injections, how long they have been taking it for, dosage amounts....etc

 

[Rrrr]

hi rrr
is that last number right? my NKC 7 is 4.24. also abnormal.
my NKC 4 was abnormal. 79.45,
my NKC 3 lytic activity was normal... but just barely ...10.3
my cd4a was high out of range.
and on a separate panel, my IL8 was super high too. 20x the upper end of normal.

yes, i typed it correctly.

 

[aquariusgirl]

My infectious disease doc, Joe Brewer, told me that he heard that elevated IL8 is showing up consistently in XMRV+ cases FWIW>

 

[undcvr]

Hey to those of you going to see KDM or in contact with him, can you quiz him on the news that he said is coming out soon referring to XMRV ? He seems to think that XMRV IS the cause behind CFS even afterall the hullabaloo ( ie contamination issues). He must be referencing his info from somewhere and it seems possible that it could be the Ian Lipkin research. I dont want to start gossip but I would really like to know more about this or even the eta date for the study coming out.

Btw about KDM's theory that CFS does start in the gut and that its gut dysbiosis, I do feel that when I am regular and move my bowels at least once a day I do feel better and that moving my bowels is an important yardstick as to how i am feeling in general.
Also there are many naturopathic approaches to the gut that all recommend some sort of gut detox to drano out our plumbing. Ived been on some of them and have obtained some relief from the, ie Pectin, clay, charcoal, seaweed, high fiber. They even recommend moving bowels out 3x a day.

 

[Sushi]

Hey to those of you going to see KDM or in contact with him, can you quiz him on the news that he said is coming out soon referring to XMRV ? He seems to think that XMRV IS the cause behind CFS even afterall the hullabaloo ( ie contamination issues). He must be referencing his info from somewhere and it seems possible that it could be the Ian Lipkin research. I dont want to start gossip but I would really like to know more about this or even the eta date for the study coming out.

We can try but I think his lips are buttoned up because of a confidentiality agreement he had to sign. He has said "Soon," is speaking at the "Invest in ME," conference in London in May...maybe then? Anyone know more?

Sushi

 

[Ronan]

Hey to those of you going to see KDM or in contact with him, can you quiz him on the news that he said is coming out soon referring to XMRV ? He seems to think that XMRV IS the cause behind CFS even afterall the hullabaloo ( ie contamination issues). He must be referencing his info from somewhere and it seems possible that it could be the Ian Lipkin research. I dont want to start gossip but I would really like to know more about this or even the eta date for the study coming out.

He cant due to confidentiality agreement. I do know that its nothing to do with the Lipkin study though.