Miss Tobback can offer phone consultations; I had one with her and it was really helpful and she was lovely to speak with and very generous with her time. Her recommendations were made based on the test results, especially the food intolerance profile. The tailored diet is very strict and to be honest it is not totally do-able but there is no doubt that it has brought improvements. My daughter was particularly delighted to find that chips (fries) were on the menu!
GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
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Just wanted to say once again how much I appreciate all of you freely sharing your adventure with us. Thank you and God Speed!
i am also following the diet of C Tobback.
It is very hard!!! My results form foodstat (the food allergy test from kdm) they where very bad!! A lot of things are 4 and higher.
So i have a very difficult diet.
I live on ricecrackers and rice with chicken in the evening.
I also have fructose intolerance.
It is very hard!!! My results form foodstat (the food allergy test from kdm) they where very bad!! A lot of things are 4 and higher.
So i have a very difficult diet.
I live on ricecrackers and rice with chicken in the evening.
I also have fructose intolerance.
I am not sure b/c I can't eat chicken according to her so just remember that a diet is personal. Fish is okay once a week. Just be diverse.
Also she stresses to rotate as much as possible. So if you eat for example brocolli on Monday don't eat it in the next 2-3 days.
As for the margerine I have to use minarine which is based on soya.
girlinthesnow
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Hi maryb, sounds like you might be veggie? I imagine its really difficult to manage a veggie diet combined with M.E. food problems.
I'm going to see Christine Tobback on Friday morning, don't want to wait until the next KDM appointment in 10 weeks time. I'm not tolerating the prescribed VSL#3 (would probably be better on Mutaflor) and am generally not doing very well at sorting out what to eat. Really wish I'd seen her in January! It seems critical to making any progress to get this right and a waste of money buying expensive supplements/antibiotics if I'm just mucking it up by eating the wrong diet.
I'm going to see Christine Tobback on Friday morning, don't want to wait until the next KDM appointment in 10 weeks time. I'm not tolerating the prescribed VSL#3 (would probably be better on Mutaflor) and am generally not doing very well at sorting out what to eat. Really wish I'd seen her in January! It seems critical to making any progress to get this right and a waste of money buying expensive supplements/antibiotics if I'm just mucking it up by eating the wrong diet.
Girl are you going this friday? I don't tolerate VSL#3 either. I think it is to do with the d+lactic acid bacteria in that formulation. I do ok with other probiotics, but that one makes me feel like I want to jump out of my own skin. Not nice.
mojoey
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someone informed me that KDM patients are being advised not to eat brown rice (yet they can eat white?) although I can't seem to pin down the source in this thread. Can anywhere confirm this?
Besides that, this is close to the diet I'm already on pretty much to the T. I recently had to take out pepper for some reason (probably because it is a gut irritant).
I'm wondering what KDM's philosophy on reintroducing foods as the gut starts repairing. This diet seems like a good baseline for elimination but as immunity and gut permeability is fixed with his protocol, it doesn't really make sense to keep on doing this?
For the record I practically live on brown rice cereal by erewhon and hemp milk. I eat white rice noodles every day too, and I don't feel a difference between the two. Every time I'm hungry I poor myself a bowl, and this has been often (like 5 times a day in between other meals) after I started LDN. I think I've put on 5-10 lbs since the LDN. Hemp milk has the most protein and good fats out of all the nut-based milks (and I wouldn't drink soy milk even if I didn't test allergic to it), so it's been a godsend for me after I had to cut out other sources of protein like eggs.
someone mentioned kefir...I know wayne said he has practically lived on dairy kefir as a sole food source for awhile. If one could tolerate it, I would do consider this. I can't even tolerate goat milk so I'm stuck on water kefir which is great as a probiotic source but not as protein or fat source. Either way, I would definitely do any type of cultured kefir over buying probiotics like VSL#3, custom probiotics, or align. It costs $20 for a starter batch and you can use that batch for the rest of your life. All you need a glass jar, organic sugar, and mineral water to do it. Why anyone would prefer to spend $60/month on probiotics is beyond me, especially when Dr. Logan has said kefir doesn't produce d-lactate either.
I've tried VSL#3, d-lactate free Custom Probiotics, progurt, and various other brands of probiotics. While doing so, my gut kept getting noticeably worse, so I think it's pointless taking probiotics when gut flora is as messed up as it is in ME/CFS patients. Maybe that's why KDM has had more success with the gut: he kills off the bad bacteria first before he implants the good.
Besides that, this is close to the diet I'm already on pretty much to the T. I recently had to take out pepper for some reason (probably because it is a gut irritant).
I'm wondering what KDM's philosophy on reintroducing foods as the gut starts repairing. This diet seems like a good baseline for elimination but as immunity and gut permeability is fixed with his protocol, it doesn't really make sense to keep on doing this?
For the record I practically live on brown rice cereal by erewhon and hemp milk. I eat white rice noodles every day too, and I don't feel a difference between the two. Every time I'm hungry I poor myself a bowl, and this has been often (like 5 times a day in between other meals) after I started LDN. I think I've put on 5-10 lbs since the LDN. Hemp milk has the most protein and good fats out of all the nut-based milks (and I wouldn't drink soy milk even if I didn't test allergic to it), so it's been a godsend for me after I had to cut out other sources of protein like eggs.
someone mentioned kefir...I know wayne said he has practically lived on dairy kefir as a sole food source for awhile. If one could tolerate it, I would do consider this. I can't even tolerate goat milk so I'm stuck on water kefir which is great as a probiotic source but not as protein or fat source. Either way, I would definitely do any type of cultured kefir over buying probiotics like VSL#3, custom probiotics, or align. It costs $20 for a starter batch and you can use that batch for the rest of your life. All you need a glass jar, organic sugar, and mineral water to do it. Why anyone would prefer to spend $60/month on probiotics is beyond me, especially when Dr. Logan has said kefir doesn't produce d-lactate either.
I've tried VSL#3, d-lactate free Custom Probiotics, progurt, and various other brands of probiotics. While doing so, my gut kept getting noticeably worse, so I think it's pointless taking probiotics when gut flora is as messed up as it is in ME/CFS patients. Maybe that's why KDM has had more success with the gut: he kills off the bad bacteria first before he implants the good.
froufox
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Good luck with the consult with the nutritionist this week girl! I hope she helps u find some answers to the dietary dilemmas!! 
Sushi
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Hi Girl,
I have my second appointment on April 19th. Does KDM look at your food intolerance test and then decide whether you should see Christine Tobback? I will only have one full day in Brussels so I'm wondering if he wants all patients to see her, or just some?
If he wants everyone to see her, I could try to make an appointment with her the same day, or if she is not available, schedule a telephone consult for later. I'm hoping he will have analyzed all the test results by the time I see him and "fill out" the rest of the protocol. If he does want you to go on a special diet would it coincide with starting the rest of his protocol?
My diet is already similar to the one filfla describes but I would still have to make some modifications--like caffeine!!
which helps me a lot with OI. (vacoconstricting) Has she told anyone here that caffeine is OK in moderation for them in particular? :Sign Please:I get shot # 10 tomorrow and I plan to only take a half dose as I've had too many bed days this week. Feels like going wimpish, but I have to get in shape to travel to Belgium and back to the States. How are others doing who have lowered the dose temporarily?
Sushi
girlinthesnow
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Yep, this friday gar, decided I couldn't wait so just going there and coming back the same day. Interesting about the VSL#3, it gives me that 'creepy' feeling too! Which probiotics have you been able to tolerate?
Thanks frou!
Sushi, no KDM didn't advise me to see Christine, I picked that up from reading this thread. It's just the problems I'm having with the VXL#3 and also the liposomal vit C that made me feel I wasn't likely to make any progress until I got this sorted out. After waiting since last Oct for an appointment in Jan, then 2 months for test results I'm unwilling to waste another two and a half months. I've been ill a long time but am rapidly going downhill as I near 50 and menopause so now feel I'm in a race against time! She is only at Himmunitas on certain days,not sure which but not Mondays, probably best to ask.
I'm currently taking a third dose but not feeling as much reaction/benefit? as on a whole dose. Will probably increase to 0.5 next week.
Thanks frou!
Sushi, no KDM didn't advise me to see Christine, I picked that up from reading this thread. It's just the problems I'm having with the VXL#3 and also the liposomal vit C that made me feel I wasn't likely to make any progress until I got this sorted out. After waiting since last Oct for an appointment in Jan, then 2 months for test results I'm unwilling to waste another two and a half months. I've been ill a long time but am rapidly going downhill as I near 50 and menopause so now feel I'm in a race against time! She is only at Himmunitas on certain days,not sure which but not Mondays, probably best to ask.
I'm currently taking a third dose but not feeling as much reaction/benefit? as on a whole dose. Will probably increase to 0.5 next week.
mojoey
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No way I'm going off of coffee either. It helps me with both my OI and gut motility.
filfla4
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@ Mojoey: I might have mentioned the white rice. However this is not coming from KDM but from Christine Tobback, the nutritionist he works with. KDM never advised me on diet, except in his report he says "low dairy and low fructose".
@ Sushi: KDM didn't suggest that I see Tobback. I knew she works closely with him and is at his clinic some days a week from the Dutch forum. I had been having such gut problems and was so confused as to what I should be eating that I scheduled an appointment to coincide with my last visit. Since visiting her I've also had a telephone consultation with her. She's very friendly and easy to talk to so that worked well for me.
About caffeine: I stopped taking caffeine early last summer, long before I started with KDM/Tobback. It was very difficult to do and I got terrible withdrawal headaches. I was also concerned about my gut motility. However I survived and felt much better for it!!!!!! I now also take decaf tea and no sodas whatsoever. I know it sounds daunting but it is highly recommended to cut out caffeine! Just remember that the withdrawal symptoms don't last forever! Perhaps you could cut down slowly? I don't get OI so I'm afraid I can't relate there.
@ Sushi: KDM didn't suggest that I see Tobback. I knew she works closely with him and is at his clinic some days a week from the Dutch forum. I had been having such gut problems and was so confused as to what I should be eating that I scheduled an appointment to coincide with my last visit. Since visiting her I've also had a telephone consultation with her. She's very friendly and easy to talk to so that worked well for me.
About caffeine: I stopped taking caffeine early last summer, long before I started with KDM/Tobback. It was very difficult to do and I got terrible withdrawal headaches. I was also concerned about my gut motility. However I survived and felt much better for it!!!!!! I now also take decaf tea and no sodas whatsoever. I know it sounds daunting but it is highly recommended to cut out caffeine! Just remember that the withdrawal symptoms don't last forever! Perhaps you could cut down slowly? I don't get OI so I'm afraid I can't relate there.
froufox
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Hi Sushi
Sorry you've had a lot of days in bed recently, and good luck with your 10th shot, not wimpish at all! Its not worth it if u need the energy to travel. If you're a wimp im not sure what i am lol. Im not sure how I'm doing at the moment to be honest...when I went to see KDM I had a full dose at the clinic which was probably a very bad idea!! Then the following week I had half a dose and have had a pretty rough time over the last week or so, which could be partly to do with me taking the higher dose of GcMAF, but I know its also to do with some homeopathic injections I was taking recently which contained alpha lipoic acid, even though it was in homeopathic form it felt pretty strong, and that as a result it was stirring up metals in me. So Ive been pretty spaced out/inflamed recently. Anyway never mind, hopefully it will settle down soon. Will be back to a 1/4 dose this week, if I do a dose at all.
Hopefully if they advise u to give up coffee, you would think that they'd offer u an alternative to help u deal with those symptoms. Same for Mojoey. Does extra salt help with the OI? Or electrolytes in general?
Re diet, I seem to do best on a low/no carbs/sugar, moderate fat and equal amounts of protein and veg. But i dont always find it easy to do esp if exert extra energy and also I'm sure that I have subclinical food intolerances that I havent identified yet, aside from the obvious culprits like dairy and gluten. I didnt do the food allergy test though.
Sorry you've had a lot of days in bed recently, and good luck with your 10th shot, not wimpish at all! Its not worth it if u need the energy to travel. If you're a wimp im not sure what i am lol. Im not sure how I'm doing at the moment to be honest...when I went to see KDM I had a full dose at the clinic which was probably a very bad idea!! Then the following week I had half a dose and have had a pretty rough time over the last week or so, which could be partly to do with me taking the higher dose of GcMAF, but I know its also to do with some homeopathic injections I was taking recently which contained alpha lipoic acid, even though it was in homeopathic form it felt pretty strong, and that as a result it was stirring up metals in me. So Ive been pretty spaced out/inflamed recently. Anyway never mind, hopefully it will settle down soon. Will be back to a 1/4 dose this week, if I do a dose at all.
Hopefully if they advise u to give up coffee, you would think that they'd offer u an alternative to help u deal with those symptoms. Same for Mojoey. Does extra salt help with the OI? Or electrolytes in general?
Re diet, I seem to do best on a low/no carbs/sugar, moderate fat and equal amounts of protein and veg. But i dont always find it easy to do esp if exert extra energy and also I'm sure that I have subclinical food intolerances that I havent identified yet, aside from the obvious culprits like dairy and gluten. I didnt do the food allergy test though.
i am going to test for nagalase in a few weeks and i was thinking to check also for oxidative stress too which is increased on hbv especially when liver is damaged.
which tests do you usually do on CFS for oxidative stress?i have read on many studies it is very difficult to measure this
which tests do you usually do on CFS for oxidative stress?i have read on many studies it is very difficult to measure this
Just wanted to say that I'm that other friend. I had travelled from Asia though and KDM didn't expect to see me until June/July which might explain the unusually high amount.
Chris
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Looking at that very helpful spread sheet recording responses so far, it jumps out that the two using BGLI report strongly positive responses, while most of those using KDM have much more mixed results--some good effects, but also downs as well as ups, etc. Are both the BGLI users Cheney patients, and are their results partly the result of other Cheney black or white magic? The sample size, especially of the BGLI users, is very very small--this is not and cannot be a statistically "powerful" study--but does anyone else have a comment on this?
I write as one who is not only a grateful and enthralled reader of the reports so far, but also as one who hopes to try Cheney's protocol later under a doctor in Vancouver who has been working with Cheney. Best wishes and thanks to all reporting, Chris
T
I write as one who is not only a grateful and enthralled reader of the reports so far, but also as one who hopes to try Cheney's protocol later under a doctor in Vancouver who has been working with Cheney. Best wishes and thanks to all reporting, Chris
T
Do any KDM patients know if he recommends GcMAF if you're taking blood pressure medicine? I know you can't take pain medicine with GcMAF, but if you can't take blood pressure medicine with it, I'm out of luck.
Safari,
I don't know what kind of BP meds you take but for what it is worth I was on florinef for low BP and had to stop taking it. GcMaf and florinef don't work well I think..
filfla4
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For what it's worth, I had my first blood test done since starting GcMAF and the full KDM protocol. My White Cell Count as gone from 11.9 (Nov) to 11.2 (March). I am not sure of the medical implications of this - presumably less inflammation? I have a consultation with KDM next week.