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

[cansado]

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?

KDM told me to go and see Christine. I am still on the diet, and reintroducing slowly more veggies etc. I have a much better sense of what I should avoid or not.
For me caseine, sugar plus a few little things are still problematic.

 

[mojoey]

Wow your WBC count was super high! Doesn't that signal more acute inflammation versus immune deficiency? Do you know what your NK cell count is? My WBC count has been in the low 4's for years

 

[dannybex]

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.

Joey -- were you losing weight while eating brown rice and/or white rice before you started the LDN? Did the LDN increase your appetite or how do you think it helped? I'm losing more weight...muscle...not good, so any info would be appreciated.

I agree with the homemade kefir and/or cultured/fermented cabbage/vegetables to make your own probiotics. Maybe the kefir is the better of the two. Some folks make a coconut kefir, which might add some very mild antiviral qualities (from the lauric acid?), but how labor intensive this would be is a big question. I used to be able to take a wide variety of probiotics, but not for the last six months or so...

d.

p.s. It's interesting that the SCD folks insist that even white rice isn't a good idea until the gut is healed because it's a dissacharide that increases LPS. But that's another novel......

 

[filfla4]

Mojoey, or anyone else more medically minded than I am....

In November my Perforin mRNA expression was 781 (on a range of 250-750). I didn't have this tested now....only a basic blood picture. I guess this is what you mean by my NK cell count? Also in November, my activated TGF-BETA 1 serum was 87,589 (on a range of 11,400 to 63,300 pg/mL) I believe this is the inflammation marker.

About the WBC, I hope we're talking about the same range. Mine is now 11.2 on a range of 4.0-11.0. Does your lab give the same range?

Yes, KDM said that I had a "chronic inflammatory disorder....". I thought all me/cfs patients had internal inflammation however KDM said that my profile fits only 20% of patients. I need to ask him exactly what he means by this next week but there was just too much to absorb in my last meeting with him. You can see my posts back then in this thread dated Jan 29th.

KDM also told my that my immune system was the OPPOSITE of what an AIDS patient would have. ie an AIDS patient would have a very lowered immune system whereas mine is totally in overdrive in the opposite direction. Does this make sense?

It's very frustrating because I have a telephone consultation with KDM next week. So last week I emailed the clinic to ask them if he wanted me to do any blood tests locally at this point to enable his assessment. I still haven't had a response. So my GP told me to get the usual blood picture, thyroid, liver function and calcium done. (those I can claim on my insurance). I haven't had my VitD tested and I'm a bit nervous about that.

I'd appreciate any feedback from those of you who are more medically savvy than I am. Thanks!

 

[dannybex]

About the WBC, I hope we're talking about the same range. Mine is now 11.2 on a range of 4.0-11.0. Does your lab give the same range?

Yes, KDM said that I had a "chronic inflammatory disorder....". I thought all me/cfs patients had internal inflammation however KDM said that my profile fits only 20% of patients.

KDM also told my that my immune system was the OPPOSITE of what an AIDS patient would have. ie an AIDS patient would have a very lowered immune system whereas mine is totally in overdrive in the opposite direction. Does this make sense?

I'd appreciate any feedback from those of you who are more medically savvy than I am. Thanks!

Well, I'm not very medically savvy, but it's my understanding that yes, ME/CFS isn't generally thought of as an immune deficiency disease, but rather one of immune dysfunction -- th1 (or th2) is 'overactive', while the other is underactive.

My WBC count has been between 4 and 5 as well, throughout the last 13 years.

Hope this is mildly helpful.

 

[Dan_USAAZ]

Mojoey, or anyone else more medically minded than I am....

KDM also told my that my immune system was the OPPOSITE of what an AIDS patient would have. ie an AIDS patient would have a very lowered immune system whereas mine is totally in overdrive in the opposite direction. Does this make sense?

I'd appreciate any feedback from those of you who are more medically savvy than I am. Thanks!

Hi filfla,
I am certainly not more medically savvy then you or anyone else for that matter, but I would like to comment on one of your questions in order to see if my understanding is correct and get additional clarification from others.

My understanding is that people with ME/CFS are in a state of persistent, but ineffective immune system activation. Our bodies perceive an issue and attempt to combat it, but the immune system does not function effectively.

This persistent immune system activation is a contributor to our always feeling so cruddy.

I look forward to hearing additional input.
Thanks,
Dan

 

[heapsreal]

dysfunctional immune system is correct, as i have elevated lymphocytes but nk function is low and go through periods of low neutrophils but in the end whats it all mean, others have different test results, the common thread is dysfunctional immune system.

cheers!!!

 

[serg1942]

Hi guys,

The VERY interesting thing is that, for me, that I already had a very depressed immune system (low leukocytes and low lymphocytes ), GcMAF is raising them noticeably, while for filfla4, who has the opposite profile, i.e, high lymphocytes, they are getting lower... In other words, the immune system seems to tend to reach the homeostasis (the optimum state).

Also very interesting is the fact that, definitively, my low vit D 0.25 is getting high (better) and my high vit D 1.25 is getting lower (better). It seems, according to the paper posted here recently that low 0.25 and high 1.25 is a sign of autoimmunity and chronic infection. Vit D is indeed intimately related with the immune response, so if its levels improve, then my guess is that the immune system is improving...

Best,
Sergio

 

[Rrrr]

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.

sushi, i thought i read somewhere on this thread that kdm says that you can/should only take the amount of gcmaf (in each shot) that you can tolerate and that does not overwhelm you and your body. i thought kdm said that taking more than yr body can handle is not helpful, and taking a smaller amount is just as helpful as a bigger amount, IF the smaller amount is all that your body can handle without it being overwhelmed. so i think you are not a wimp to take the amount yr body can handle.

rrrr

 

[Rrrr]

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 don't know about cindy (who is using bgli), as she has not updated that comment on the spreadsheet for a very very long time. i do know from off-forum that the other bgli patient is seeing some positive results.

but it did seem to me, too, that the bgli patients were not having as hard a time with their gcmaf as the kdm patients. does that mean that the bgli product is better, or less potent? i have no idea!

 

[Rrrr]

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]

KDM breath test

I have a question for the nurse or staff at KDM's office about the breath tests. But I have not heard back even though I have asked a few times. Can anyone help me with this?

I often need to take a sleeping supplement (Melatonin) before bed and sometimes in the middle of the night to help me sleep. If I do not do this, I will likely spend the whole night awake. May I take Melatonin the night just before the breath tests?

These are the ingredients: Melatonin, dibasic calcium phosphate, mirocrystaline cellulose, stearic acid, magnesium stearate and colloidal silicon dioxide.

Thank you for your continued help, everyone. I am very very appreciative!!!!!!!

Rrrrrrrrrrrrrr

 

[filfla4]

Rrrr : sorry but I can't help you with these questions as I didn't stay at the Eurovolley Centre and I don't know about the melatonin and the breath tests. However when I've needed some info urgently from the clinic, I've usually followed my emails with a phone call if they remain unanswered. I know this might be difficult for you with the time difference etc.

Wishing you the best of luck with your trip!!!!

 

[girlinthesnow]

Rrrr,
As far as I know all the rooms at the Eurovolley centre have 2 single beds. The floors are concrete so I'd imagine they'd be very uncomfortable to sleep on. You can organize a phone wake up call. It's only a few (3 to 5) minutes to the clinic. Reserve the bus when you check in. It costs 4 euros. The restaurant has restricted hours, I don't know what they are, the receptionists at the hotel all speak English so maybe give them a call?

Good luck with your trip, I hope it all goes well for you!

 

[Rrrr]

thanks, girlinsnow and filfla!

i got an email back saying "It is OK to use Melatonine" before the breath test. i hope they understand that i'll be using it at 2 am, when the test is at 8 am! (Update: I emailed back and they said it was fine to take at midnight or 2 am or whenever. Whew. At least I'll get some sleep the night before meeting KDM.)

 

[Vojta]

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?

Sushi

Hi Sushi,
I've got response from the clinic that Christine Tobback doesn't consult there on mondays and she will not be there all that week anyway. (I have appointment on April 18th). It's defintiely better to synchronize both appointments when one makes appointment with KDM.

 

[mojoey]

Yes although ME/CFS seems to be an immune dysfunction disease, there still seem to be certain trends of dysfunction: low NK cell count and cytotoxicity, rnase-l dysfunction, elevated C4a and tgf beta-1, low WBCs etc.

I'm curious how many ME/CFS patients actually have elevated WBC counts? I recall elevated counts being quite common in lyme disease

 

[Sushi]

To Rrrr--

I'll jump in on a few of the questions I know answers to.

There is also a city bus that goes right from the clinic to the Eurovolley for 2 euros if you feel like coming back that way.

If you bought your ticket by credit card, many cards offer free travel insurance that includes cancellation--mine did.

I emailed Eurovolley about freezing the GcMAF and my freezer blocks in their freezer and they said fine.

Also, KDM did say that there was no benefit in taking a larger dose of GcMAF than your body can handle--and I did only take a half dose yesterday and do feel better today. The big questions is what does he mean by "more than your body can handle?" I don't get "dangerous" symptoms from a full dose, just feel so energy drained that I can't sit up for several days a week. Is this "good" or "too much?" I'll ask in the next appointment. For the interim, since I will have to do a lot of traveling, I'll stick to half a dose to be more "up and at-em"....up and at-em in our terms!

Interesting--I had an eye exam yesterday and the optometrist (after examining my eyes) asked if I had a neurological condition. She said it was evident in the eyes. Has anyone else been told that?

Sushi

 

[mojoey]

The BGLI patients that are under Cheney are also doing it sublingually which dents the immune response to the content. This count be why they're not having as hard of a time?

i don't know about cindy (who is using bgli), as she has not updated that comment on the spreadsheet for a very very long time. i do know from off-forum that the other bgli patient is seeing some positive results.

but it did seem to me, too, that the bgli patients were not having as hard a time with their gcmaf as the kdm patients. does that mean that the bgli product is better, or less potent? i have no idea!

 

[heapsreal]

Yes although ME/CFS seems to be an immune dysfunction disease, there still seem to be certain trends of dysfunction: low NK cell count and cytotoxicity, rnase-l dysfunction, elevated C4a and tgf beta-1, low WBCs etc.

I'm curious how many ME/CFS patients actually have elevated WBC counts? I recall elevated counts being quite common in lyme disease

I believe that if u get a lymphocyte subset test done that elevated cd8 is a sign of reactive ebv/cmv and possibly other herpes viruses. Im not sure if these are the cause but it does show that our immune system cant handle these viruses as a normal immune system can shut them down. like i have mention before my nk function is low. my nk numbers ie cd56 is in the normal range and cd3 which i have heard is another nk cell has alwayselevated. I dont actually think alot of nk numbers would be abnormal, but there function is the thing that is low and they are finding in a study in australia where they are measuring nk function over an 18 month period.