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

[filfla4]

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.

 

[Charles555nc]

So Sushi, could you just ask him instead of guessing what he might say? Please let us know how many weeks worth of GcMAF you were able to transport. I just started antiretrovirals, but if they dont work I may be looking at a trip for KDM. Im in very bad shape.

 

[girlinthesnow]

@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.

Thank you for writing out your dietary regime flifla4.

I'm planning to see Christine when I go back to Himmunitas in June. In the meantime,I'm struggling to know what to eat. Did she form this diet on the basis of the FOODStats test or is it a non-specific 'gut healing' diet?

 

[filfla4]

Thank you for writing out your dietary regime flifla4.

I'm planning to see Christine when I go back to Himmunitas in June. In the meantime,I'm struggling to know what to eat. Did she form this diet on the basis of the FOODStats test or is it a non-specific 'gut healing' diet?

I don't have any major allergies on the FOODStats test other than eggs. I would say it is her "gut healing diet". I forgot to mention, pepper is also out as is any citrus fruit (not even lemon juice!) or vinegar or mustard in salad dressings - just olive and salt on everything. I managed to get hold of an organic pure virgin olive oil (which she said is great) and it actually has a great flavour in itself - so that helps a lot when eating very bland food.

 

[girlinthesnow]

I had quite a few allergies come up on the FOODStats test: casein, wheat, beans including soy, rice, potatoes, amaranth (weirdly), bananas, cranberries....) and like you am allergic to eggs. The rotation diet in the report was pretty undo-able I thought.

The difficulty is my usual diet more restricted than this and pretty similar to the "gut healing diet" , ie. plain meat and fish with certain veggies, coconut and lots of olive oil.

I am very fond of black pepper and lemons though...

 

[Ingrid88]

thank you filfla4 to list this diet regime.

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.

Is Chris Tobback not concerned about trans fats in margarine?

 

[Alexia]

Hi filfla4,

Thanks a lot for the information about the diet prescribed. I've seen several times mentioned from other patients " food low in histamines" what type of food is that?

I've found funny when you say "Believe it or not fries are ok, occasionally!" it's Belgium after all! Belgians would not survive without (at least ocasionnaly) their frites belges!!

 

[Cloud]

Hi Filfa, thanks for the information. You say that vinegar is out. Do you know if this is true for Apple Cider Vinegar as well? I ask because it has a very different effect on gut Ph, than does the distilled vinegar. I use organic unfiltered apple cider vinegar together with organic olive oil almost daily for salads.

 

[girlinthesnow]

I just did a search for 'Christine Tobback' and discovered she has a nutrition website http://www.optinutrics.com/EN/cvs.php

 

[filfla4]

@ girlinthesnow: yes, cutting out black pepper and lemon juice/vinegar was particularly tough!

@ Inge: can't answer this about Tobback being concerned about trans fats in margarine. Can tell you that I use an olive oil margarine and she said that's fine. That said, I don't consume much of it.

@ Alexia: yes, a low histamine diet is particularly confusing, especially since fish and chicken are high in histamines. This is what she recommended I eat. If you google it you'll find out lots more.

@ Cloud: She was very strict about no vinegar - boring I know

I think that diet is a very personal thing. I found Tobback to be excellent in her analysis and explanations. I also found the fact that she works closely with KDM and is used to seeing many ME/CFS patients all the time, to be particularly reassuring.

 

[serg1942]

Thanks so much flifla4 for taking the time and effort of writing down your diet!

Uff! If I had to follow that strict diet, I would go nuts! I pretty much follow an ancestral diet, gluten and dairy free, and of course, being in Spain, olive oil is like water!

But, if I had to be soooooooooo extrict, I would loose much weight, and I don't think that would be good for me, and also I couldn't eat much, as vegetables disagree with me, If eat them plain...

I know her diet makes sense for ME/CFS, but I would be scared to follow it right now... Anyway, is something to consider for the future, and of course, if after seeing my tests results, KDM recommends seeing her, I will...

Un abrazo,
sergio

 

[Rrrr]

smart! but they cut off my question in the email. i guess i'll do it again.

Rrrr,

Good research! Thanks. You might want to put a copy of your emails from Customs and TSA along with your documentation from KDM. The little guy with the scanner might not be up on all the rules!

Sushi

 

[Vojta]

filfla4: Thanks for information about diet. I would like to ask you if you saw Tobback right after your appointment with KDM or you had to make special appointment with her? Because I'm seeing KDM on 18/4 and I need to know if I should make an appointment with her in advance.

 

[Rrrr]

@filfla4: Thanks for information about diet. I would like to ask you if you saw Tobback right after your appointment with KDM or you had to make special appointment with her? Because I'm seeing KDM on 18/4 and I need to know if I should make an appointment with her in advance.

me, too!

and can someone tell us the cost of seeing her

AND the cost of getting KDM's food allergy testing

AND if we need to stay off certain foods before we do the food allergy testing

thanks!

 

[Sushi]

So Sushi, could you just ask him instead of guessing what he might say? Please let us know how many weeks worth of GcMAF you were able to transport. I just started antiretrovirals, but if they dont work I may be looking at a trip for KDM. Im in very bad shape.

Hi Charles,

I brought 12 vials with me to Spain--enough to last until my next visit. Another friend who was traveling much further took 40 vials. I hope to take enough to finish treatment when I return to the US.

I'll ask him about getting it in the States--if there is an opportunity to ask! Appointments are very short and we don't get the chance to ask all the questions we'd like to.

Sushi

 

[dannybex]

KDM & Diet...

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.

Thanks so much. That definitely sounds almost like the diets that many with salicylate and histamine (amine?) intolerance have to eat (myself included) -- super bland, due to the no spices (sals) thing.

I am a little surprised about both the olive oil and esp the margarine recommendations however. I had read that olive oil is really high in salicylates, but of course there are conflicting lists out there. And margarine...I didn't think anyone was recommending that these days, but again perhaps it depends on the type?

Of course there are a lot of 'diets' out there. The "GAPS" diet, the "SCD" diet, the "BED" diet...all with some overlap, but some with differences too. But it's interesting that the SCD claims to lower H2S levels by cutting out almost all grains, including even white rice. I don't quite get it, but rather than sidetrack this thread, there's another thread discussing diet here that some might want to check out:

http://phoenixrising.me/forums/showthread.php?3908-(SCD)-Specific-Carbohydrate-Diet-anyone

THANKS for your reply!

 

[dannybex]

p.s. histamines...

Believe me, I'm not trying to second-guess the nutritionist, but just now saw your post about chicken and fish being high in histamines.

Again this is just from what I've read online, but it's my understanding that meats and fish in general are low in histamine -- as long as they're eaten 'fresh'. The histamine content increases once they're cooked and eaten the next day or later.

???

What's really frustrating is that often the diets that are low in amines are HIGH in salicylates, and vice versa.

Like Sergio, I too would lose a ton of weight if I had to go on too strict of a diet. But if rice is okay...and some oil, then that doesn't seem as strict as some of them out there.

And the good thing amongst all these diets is that once one cuts out certain problem foods for six months or sometimes longer, then the problem foods can be slowly reintroduced, because, for example, the burden to detoxify salicylates has been eased, and sulfation is working better. This doesn't apply to everything (like gluten I suppose) but is supposed to be the case in general (I think!).

Dan

 

[Rrrr]

NEXAVIR

i know many of us want to take nexavir with our gcmaf. for those who want to try to get nexavir covered by medicare this is what my doctor is doing for a patient (not for me, as my medicare DID cover nexavir, for some reason):

first, i recommend my pharmacy for nexavir, as they work with yr doctor to try to get it covered. and they ship to anywhere in the US for free via US postal service. perhaps they'd ship it around the world, too, if you pay for postage.

Johnson Drug
577 Main St
North Waltham, MA 02452,
(888) 335-5577
www.johnsondrug.com

my pharmacy told me they did not even need a diagnostic code for me, which sounded strange to me, but i asked 2-3 times and was told the same each time. but another friend first tried to get nexavir with the diagnostic code of cfs. it was rejected. then the patient tried acne. rejected. then my doctor was told by medicare that the next step to try to get it covered is to send medicare proof that the drug (nexavir) has been used off-label for the condition in question. so my doctor printed out a number of CFS and nexavir studies and sent it to medicare. they have not heard back yet. but i suppose this same approached could be used by everyone! so i think everyone should try it.

there are a lot of nexavir and cfs related studies listed on this website:

http://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/

 

[dannybex]

One last diet question: I'm curious what KDM or Tobback views are on fermented or cultured cabbage/veggies to promote good bacteria in the gut?

Thanks.

 

[filfla4]

@ Vojta: I requested an appointment with Tobback myself, when I was making my second appointment with KDM. I can't remember the exact cost but it was around 50 euros. I was just lucky to be with her for 2hrs because her next appointment was cancelled. I think normally her consultations are for one hour.

@ Rrrrr: KDM does the hydrogen breath tests for lactose/fructose (90 euros each). For the food allergy test my blood was sent to the U.S. to US Biotek. (160 euros) About preparing yourself for the tests, when I booked my lactose/fructose tests, they sent me a sheet with instructions. Let me know if you need more on this. I am not aware of any special prep for the food allergies blood test but that was done on the same day as the breath tests and maybe the prep was the same.

@ Sergio: vegetables are not the main food in the diet, and only specific vegetables which are low in fructose (in my case). I eat a lot of rice and rice products, a lot of protein (fish, chicken and red meat). Tobback also encourages gluten-free pasta or bread. Above all I think that diet is a totally personal thing - what is good for me may be terrible for the next cfs patient! Besides, I need to lose a lot of weight I gained in the last few years, so for me this is great!

@ Dannybex: no they are on her "forbidden" list.