Response from Dr Klimas

[Cort]

A slow jog is pretty darn good! Did Dr. Klimas recommend mate? I think it has some caffeine in it?

Here's some more info on Isoprinosine

http://www.aboutmecfs.org/Trt/Isoprinosine.aspx

 

[julius]

what kind of mate. Mate is a general term for various types of teas. Theres yerba mate, mate de coca etc. BTW, if it's mate de coca I can understand why you feel more energy. :horse:

 

[alice1]

LOL yes it's yerba mate..wouldn't mind some coca mate though.
My quick update...doing double duty on the Imunovir for the week and my stomach is a little off but so far thats it..hopefully that's where it stays considering it's day one.Oy!
Query.
There are 3 reasons I think that are activating the ebv.
1) xmrv or unknown virus
2) lyme
3) mercury...my mother worked in a factory with mercury.s
She died from Lymphoma and my brother died from Lymphoma,I live with a type of Lymphoma.She may have very well
brought mercury home on her clothes,body,hair whatever.I have other half-sibs who did not grow up in the same house and they have not gotten sick.
It was mom,bro and me.To me this makes so much sense.Does this jump out at any of you at all?Need some input.

 

[cfs since 1998]

My quick update...doing double duty on the Imunovir for the week and my stomach is a little off but so far thats it..hopefully that's where it stays considering it's day one.Oy!

The first few days I took imunovir I had some stomach upset/GI issues. It only lasted two, maybe three days. Since then it hasn't come back and I've had basically no side effects at all.

 

[alice1]

hmm is this working??

 

[alice1]

yes it is...

 

[Frankie Dene]

I took imunovir from 2004 and in 18 months I was 100% well. It wasn't something fast, didn't make much progress for the first year but stuck with it. I took 6 per day every day - had no uric problems but the levels were high. I took it for 3 years at that rate - then being so well for so long cut back to 2 per day. 2 years later, (ayear ago) I had a big relapse - I've gone back to 6 per day and now a year later am starting to feel that it is working - but still mainly house bound - but now feel energetiic. I know to take it slowly so am not putting my body under stress. I am surprised that you feel it has made such a difference so soon - being able to jog!!!! That is great news. I always wondered if I had 100% recovery because of the imunovir - who knows why we get better! But it has to work for me again so I'm a believer!

 

[goldiland]

Alice,
I'm glad you're doing so well on immunovir... I had a lot of headaches while I was on, but of course everyone responds to things differently. I would have to agree with Frankie though that I would be surprised if immunovir was making any difference for you yet. It is typically three-four months before there is any difference that shows up in your immune profile and that would be an early responder. It is probably a combination of some of the other things that you are trying right now.

In response to Frankie's story, Klimas and Dr. Lina Garcia from UM have told me that a lot of patients stay on immunovir or another immune type modulator at a lower dose after acute treatment phase (I have been off immunovir for about 1 year and take immpower at her suggestion) as maintanance. As I've posted before, most patients will have positive NK activity changes/reduction in viral load in response to immunovir within 6 months

 

[alice1]

Thanks for all the info,cfs,Frankie and goldiland..I agree I think it's the combo of the other things I'm doing.I went for another wee jog last night and it felt so good to get those endorphins working.Please understand when I say wee I mean wee..not saying its
not a big deal because it is and I'm greatful I can do it.I just don't want anyone thinking I was sprinting
on the track.lol.
A 100% recovery Frankie..wow.sorry about your relapse but stay on the pills and you'll get there again..
I would be so happy if my NK activity rises along with lowering viral load..Thats really something to look forward to and be happy about...thanks so much.
Cort a friend from Argentina got me hooked to mate.

 

[Dr. Yes]

Quick udate,
This is my second week of Imunovir and so far so good.I have more energy but I'm not sure if it's from being gluten free,stopping sugar and drinking mate from Argentina,This tea is amazing,better than green tea as far as benefits and gives you a good boost..

It can also look suspiciously like weed to a campus security officer who finds it hard to believe that what he is looking at is a bag of "Argentinian tea".

 

[alice1]

Sue I hope you get some relief with the azt....
Yes it does look like weed so it's a good thing I'm not a student..lol.

 

[alice1]

Are you saying this is what happened to you Dr. Yes??

 

[Dr. Yes]

Alice,

I will have to consult my lawyer before answering that question.

 

[alice1]

I have time....

 

[August59]

I finally spoke with her and my results showed Chronic Epstein Barr along with HH6.
My Natural Killer cells are below normal.
So Dr Klimas has recommended a drug called Imunovir which is great for cells and also viruses.
Goggle it and see the list for what it does and targets.
It was a great phone call.I feel vindicated from all those MD's who didn't want to do blood work,who didn't want to know or believe that it exsists.
I'll keep you posted on how this treatment goes.

That "lab results" has got to be one of the most common results. My Epstien Barr was much higher than the HHV-6 and it also makes me a little curious as on the "Epstein Barr Forum" these results are the most common as well. It's almost as if EBV and HHV-6 are very, very closely related and understandable since they both are herpes viruses.

 

[alice1]

Hi August59..it does seem to be the norm with EBV.I did read one post where the woman had high EBV but no HHN-6.
Like you my EBV was high with a slighly elavated HHN-6.
There are many different opinions about the two going hand in hand at least by doctors..and for the most part what do they know..lol.

 

[girlinthesnow]

Hi Alice1,
I saw Dr Klimas in January, my results showed EBV activation but no HHV6 also have the usual TNF-alpha elevated (4x normal) and low NK cells.
Lots of similar but not identical results.

Fantastic that you are improving on the Imunovir. Dr Klimas hasn't prescribed this for me, just recommended high dose B12 and Omega 3 (6000/day)

 

[alice1]

I want to get on LDN as well.It's suppose to really help allergies and spring has sprung here and I'm feeling it big time.
They knock me out,just what I need to feel more tired.
If I can get on the LDN I'll see what it does..if it's helpful great if not I may be heading to CR.
How are you doing with protocal Dr. Klimas put you on??
Better I hope.

 

[MrHappyGoLucky12]

Kati,

I take Imunovir with Valcyte.

 

[cfs since 1998]

I take Imunovir with Valcyte.

Have you improved while taking these?