Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan

[dannybex]

People do recover...

I've had it 6 years, I hope that isn't too long, it might end up being 8-10 years by the time anything comes along to treat it, I feel awful now, I was so optimistic.

Why wouldn't they be able to treat it later on?

Hi Knackered,

I know several people who have recovered, and some who are recovering, and of course many who are still ill like myself.

But two of those who have recovered completely -- one was sick for sixteen years, the other for 17. It's rare, but I think mainly because there are so many different causes/factors, so each individual will have different things to treat -- plus most tests that one needs are often not covered by insurance -- a huge roadblock.

Anyway, don't give up hope -- some people do recover, even after being sick for many, many years.

Dan

 

[julius]

knackered,

another thing to consider. I have had this for a very long time. But still, there are occasional days that I feel completely well. (rare, but it does happen). So this tell me that the damage is not likely neurological, and also not irreversible.

 

[bluebonnet]

Comments


Also, I notice she agrees with Bateman and Klimas that it is vertically transmitted.


Tina

Sorry to be so ignorant, but what does "vertically transmitted" mean?

 

[dannybex]

Knackered maybe this will help - Back in November, Dr. Klimas responded to a question from a woman in the the audience who asked specifically, if

Dr. Klimas responded:

Perhaps that is what Dr. Mikovits intended to infer. I think that's pretty hopeful.

Here's another quote from Dr. Klimas, one that I have on my blog...helps keep my hopeful, from a January 2008 interview on Prohealth, 22 months before the XMRV discovery:

Q: Doctor, do you believe in remission of the illness?

Dr. Klimas: Absolutely! And complete resolution! It happens, but not often enough to make promises. I get the best hugs on airplanes and other public places when I bump into patients now healthy and happy.

 

[starryeyes]

AAAAAAKK.... Videus Interruptus!

Oh that is so funny Dr. Yes!!

I slept through the whole thing which makes me look like I know what I'm doing after reading all the frustrations here. :sofa:

I dreamt that Phoenix Rising had a convention at a very posh hotel. We all had stereos in our rooms and we were all playing music while we were getting ready to go to a theater to see a show... I think that would be Mikovits's webinar! lol It was never clear though but it was somehow connected to the convention. We all had a great time. I had suddenly lost the weight I've gained and I felt great and was wearing a new outfit with heels. Cort got mad at me though because I kept telling him he should go use the exercise room. :innocent1:

Cool Sig, InvertedTree. NDEs have helped me cope with all this so much!

 

[usedtobeperkytina]

I am taking Proboost Thymic Protein A. I was tested for natural killer cells in 2007, eight months after I plummet. (I believe I actually got sick with CFS in 2004, but it was gradual, then a sudden plummet.) My NK cell level was low. Supposed to be at least 8, mine was 6. So he gave me immune system boosters, the mushrooms, etc. A couple of months later, NK cells were tested again. No change, still at 6. So my doctor suggested the Thymic protein A. Your local herb store will likely have a supplement with thymus in it. But I was told that you aren't getting the actual protein that helps the immune system, you are getting pieces of the gland that produces the needed protein. Plus, much is lost in digestion.

Now, the Proboost Thymic Protein A is the actual protein. And it is a powder you put under your tongue, so it is not lost in digestion. I buy it online. I have not seen it in any supplement store. And I asked one to look into it, then the owner said only one company makes it and they are already pricing it for them to make profit. In other words, he couldn't buy it at a wholesale price.

Is it high? Yes, but so is most of the other supplements I am supposed to be taking for my illness. I just have to prioritize based on what my understanding is at the time.

Does it make me feel better? I don't know. I take so much and so many other factors, including weather, diet, sleep and activity level influence how I feel. I have trouble telling if one supplement is working over another or if any of them work.

Here is info: http://www.proboostmed.com/

But you can find it on many different Web sites for sale. And prices vary. So shop around.

Tina

 

[Lily]

Oh that is so funny Dr. Yes!!

I slept through the whole thing which makes me look like I know what I'm doing after reading all the frustrations here. :sofa:

I dreamt that Phoenix Rising had a convention at a very posh hotel. We all had stereos in our rooms and we were all playing music while we were getting ready to go to a theater to see a show... I think that would be Mikovits's webinar! lol It was never clear though but it was somehow connected to the convention. We all had a great time. I had suddenly lost the weight I've gained and I felt great and was wearing a new outfit with heels. Cort got mad at me though because I kept telling him he should go use the exercise room. :innocent1:

:Retro tongue::Retro tongue:Ha! thanks for that teejkay - aren't you glad you slept through it! Now you'll be able to watch at your leisure, and without having to worry about Cort exercising or even worry about whether vBullletin updates are messing things up

 

[julius]

Thanks Tina,

That's good info. I pm'd you..thought maybe you took off.....guess not.

 

[cfs since 1998]

I am taking Proboost Thymic Protein A. I was tested for natural killer cells in 2007, eight months after I plummet. (I believe I actually got sick with CFS in 2004, but it was gradual, then a sudden plummet.) My NK cell level was low. Supposed to be at least 8, mine was 6. So he gave me immune system boosters, the mushrooms, etc. A couple of months later, NK cells were tested again. No change, still at 6. So my doctor suggested the Thymic protein A. Your local herb store will likely have a supplement with thymus in it. But I was told that you aren't getting the actual protein that helps the immune system, you are getting pieces of the gland that produces the needed protein. Plus, much is lost in digestion.

Now, the Proboost Thymic Protein A is the actual protein. And it is a powder you put under your tongue, so it is not lost in digestion. I buy it online. I have not seen it in any supplement store. And I asked one to look into it, then the owner said only one company makes it and they are already pricing it for them to make profit. In other words, he couldn't buy it at a wholesale price.

Is it high? Yes, but so is most of the other supplements I am supposed to be taking for my illness. I just have to prioritize based on what my understanding is at the time.

Does it make me feel better? I don't know. I take so much and so many other factors, including weather, diet, sleep and activity level influence how I feel. I have trouble telling if one supplement is working over another or if any of them work.

Here is info: http://www.proboostmed.com/

But you can find it on many different Web sites for sale. And prices vary. So shop around.

Tina

Did you have your NK tested after being on Proboost? I tried it for about 6 to 8 months and couldn't tell a difference. I stopped it and am putting the money towards isoprinosine instead.

To the person who posted about AHCC. It is a mushroom extract that allegedly boosts NK cells or function. I think this might have been the supplement Dr. Mikovits had in mind when she was talking about this subject. It is patented so it's a bit on the expensive side, but you could just get an unbranded mushroom extract to save money.

 

[usedtobeperkytina]

Wikipedia says it is transmitting an infection from mother to child. It refers to a child being able to inherit something from father or mother.

Tina

 

[jewel]

Thanks to all of you who posted, explaining her talk for all of us who were unable to watch. The irony of it... I was so dismayed all afternoon that I could not be at my computer to see this. I guess next week, once they post it on PH. What a frustrating afternoon for all of you, though lots of support with these posts flying back and forth. Take care, J

 

[usedtobeperkytina]

No

No I didn't get it tested afterward. Overall, I started making progress and my doctor was three hours away. So I just started going to local internist to get the meds, and I just picked and chose supplements based on what the latest thing I read about as I tried to learn more about the illness. The thing was, at that time, I had endocrine problems, immune system problems, energy problems, neurological problems, etc. In other words, I had CFS. So with limited funds, I just picked out which supplements I took based on symptoms more prominent. I couldn't afford stuff for all of it.

And that to me is the best part of the XMRV discovery. I now know where to focus my treatment plan.

About six months ago, I changed to a local integrative doctor here close to home. We don't have a CFS expert here. (Don't get me started on that.) So I told this new doc what was abnormal before, that I had not been tested in a year. I felt overall better, but still had some problems. So I asked her to run all the tests that were abnormally low before. She ran all I requested, but discouraged me from testing for NK level. She said if it was low before, I should just take stuff for it. She said tests don't show the mushrooms and other supplements work as far as changing the levels in tests, but they aren't a problem. So if mine was low before, I should just start taking stuff for natural killer cells. No need to test again.

Now, she is not an immunologist. I might get a different response from an immunologist. But with the XMRV, I decided to start Proboost Thymic protein A again.

I would like to get NK cells tested again, both while on the thymic protein and off of it. But, I doon't want that enough to travel 45 minutes away to an immunologist.

By the way, my integrative doctor did prescribe some antiviral supplements for me. And she suggested melatonin, iodine supplement to help prevent cancer. Klimas said C0Q10 is very good at killing antioxidants. So that is where I am putting my supplement money now.

Plus multi vitamin.

Tina

 

[Dr. Yes]

...I felt great and was wearing a new outfit with heels.

Oh, I have that dream all the time.
​

 

[cfs since 1998]

And that to me is the best part of the XMRV discovery. I now know where to focus my treatment plan.

Very true. Not only does the discovery help us refocus our treatments, but it also gives a new context for searching out treatment possibilities. For example, I now often add HIV to my searches and find a lot of useful information that way.

A search for "AHCC HIV" helped me find this:

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102208570.html

"... Treatment with AHCC resulted in: 1) Significant induction of NK cytotoxicity occurred at one month (220%) and maximized at 3 mon (440%) and was maintained at this high level. 2) Marked increase in the absolute CD4+ cell counts in 14/20 patients (120%) at one month and continued at the same level. 3) No change in percentage of CD4+ cells. 4) Significant increase in absolute CD8 cell counts in 12/20 patients (137%). 5) No change in CD4/CD8 ratio... We concluded that AHCC is a potent immunomodulator, with potential therapeutic role in the stimulation of host immune response against HIV."​

 

[julius]

cfs since 1998,

AHCC is an extract from shitake mushroom mycelium. There is a certain procedure invovled and Im not sure what it is. If you just use regular shitake mushrooms, you can get the beta glucans. But AHCC contains alpha glucans, and I'm not sure exactly the process.

All I know is;
a) they use mycelium
b) they hybridize the mushroom somehow.

you might find this link useful http://ahccresearch.com/

 

[julius]

Perky Tina,

I checked the proboost out. I saw that it has immunomodulatory properties, but no mention of NK cell activity. Have you seen anything specific about proboost and nk cell activity?

 

[cfs since 1998]

I checked the proboost out. I saw that it has immunomodulatory properties, but no mention of NK cell activity. Have you seen anything specific about proboost and nk cell activity?

I just remembered, there is a study on Proboost on their website, conducted independently of the company by Dr. Rosenbaum. While it had statistically significant effects on total white blood cells, T-cells, and RNase-L cleavage, it had no effect on NK cell activity.

 

[julius]

CFS since,

I saw your blog about the inosine. That was good stuff. I like the kahunas you have experimenting on yourself like that. I am really into the natural remedies myself. I live in Canada and I go out into the forest and collect a lot of stuff...sort of a hobby.

Anyways, i thought you might be interested in another one I saw for aids. Are you familiar with monolaurin or lauric acid? Lauric acid is found in virgin coconut oil. It is a short chain fatty acid that is able to dissolve lipid coatings (shells) on viruses. Whats interesting about it is that basically all the viruses associated with cfs (including xmrv) have a lipid coating. I have started trying it, but only a few days now....not long enough for results.

I was wondering if you had any thoughts on it...with your apparent knowledge of biochemistry.

 

[Dr. Yes]

Seor Julius, that's "cojones", not "kahunas", unless things are very different in Canada. (Wouldn't want to anger any Hawaiian members..)

 

[cfs since 1998]

CFS since,

I saw your blog about the inosine. That was good stuff. I like the kahunas you have experimenting on yourself like that. I am really into the natural remedies myself. I live in Canada and I go out into the forest and collect a lot of stuff...sort of a hobby.

Anyways, i thought you might be interested in another one I saw for aids. Are you familiar with monolaurin or lauric acid? Lauric acid is found in virgin coconut oil. It is a short chain fatty acid that is able to dissolve lipid coatings (shells) on viruses. Whats interesting about it is that basically all the viruses associated with cfs (including xmrv) have a lipid coating. I have started trying it, but only a few days now....not long enough for results.

I was wondering if you had any thoughts on it...with your apparent knowledge of biochemistry.

Thanks, although I have no special knowledge of biochemistry. I'm taking isoprinosine from goldpharma.com now, as the price was too good to pass up. But it is still helpful to have learned what's in it and how it's made, etc.

I actually tried monolaurin for a good six months, using the Lauricidin brand. I was on a very high dose and couldn't really see it doing anything. Nobody knows if the active ingredient actually gets into the bloodstream, and there haven't been any in vivo studies on it. One source predicted that it did not get into the bloodstream. I once read that the lauric acid in coconut oil gets converted by the body into monolaurin and THEN gets into the bloodstream that way. But I really don't know. Lately I've been trying to focus on supplements that have been studied in vivo.

To bring up the topic of NK cell function again (did you see post #297?), there's this study of the effects of echinacea on NK cell activity in people with HIV: http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102229824.html. They saw a 6-fold increase in NK activity against HIV after 4 months. This seems a bit better than AHCC and at a lower cost as well, however it seems echinacea is VERY controversial, including in HIV patients. I've heard arguments that it stimulates the immune system too much, or that it just creates more cells for the virus to infect, etc.