Response from Dr Klimas

[alice1]

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.

 

[leelaplay]

That's great news Alice. I hope the treatment works. Looking forward to the update posts.

 

[cfs since 1998]

Thank you for telling us about your consultation with Dr. Klimas. Can you tell me what dosage of Imunovir Dr. Klimas said to use? I started this drug myself recently. I have heard that she likes Imunovir (also called Isoprinosine) and have been trying to find out what her protocol is, because most doctors use some kind of pulsing schedule, but each doctor uses a different schedule. Like islandfinn, I am looking forward to updates on your progress as well.

 

[alice1]

She's sending the results to my family doctor who will give me the prescription.As soon as I get it I'll certainly let you know.

 

[Lesley]

I'm so glad for you. I think going to a doctor who believes you and understands what is happening to your body (as much as anyone does) is a big step to beginning to heal. It is as if a huge weight has been lifted. I hope you get good results!

 

[SaraM]

Thanks for letting us know about your consult. Could you also explain what you mean by chronic HHV6 and EBV? Does it mean you have high IgM level or just IgG level is out of range?

 

[ukme]

Thanks for sharing Alice, all the best

 

[alice1]

SaraM the CEBV basically means I have cronic mono.The HHV6 one of the herpes viruses is what triggers the EBV.
Why it doesn't shut off is the mystery.This is where the XMRV may come into play.

 

[alice1]

I just recieved the results and of course my fax ran out of ink with the IgM and IgG but I'm hoping it's stored so when I replace the cartridge I'll have it.
I do have the recommended doses= 1 cap three times daily(500mg)first week,weekend off.
Week 2,2 caps three times daily,weekend off.
Weeks 3,5,7 repeat week 1
Weeks 4,6,8 repeat week 2
There is a risk of gout or renal stones but by taking the weekends off this is rare.
Give it 4 months to judge response rate and at 6 months a repeat of lab work.
Please remember this is my protocal.I certainly understand the need to try whats out there but I would feel terrible if this did harm to anyone doing what is recommended for me.
If you try this I certainly wish you the best and that you'll feel better.

 

[shannah]

Alice,

Can I ask if Dr. Klimas is testing her patients for XMRV yet?

shannah

 

[Dr. Yes]

It's so great that you finally got validation - and treatment! - from a doctor.

I hope the Immunovir helps you! (btw, is it covered by your insurance or is it another of those things they won't pay for?)

Thanks for the feedback, and keep us posted!

 

[MEKoan]

Alice,

How wonderful that you are in such good hands! Thank you for sharing the experience with us and reminding us that there are things we can do independent of XMRV. You are blazing a trail for the rest of us and I want to thank you for that.

peace out,
Koan

 

[calzy]

Alice,

How wonderful that you are in such good hands! Thank you for sharing the experience with us and reminding us that there are things we can do independent of XMRV. You are blazing a trail for the rest of us and I want to thank you for that.

peace out,
Koan

I could not live without Immunivor! Hope it works for you, not a cure, but gives relief.:sofa:

 

[calzy]

It's so great that you finally got validation - and treatment! - from a doctor.

I hope the Immunovir helps you! (btw, is it covered by your insurance is it another of those things they won't pay for?)

Thanks for the feedback, and keep us posted!

Not covered by insurance (US), cause its not FDA approved, but Im sure Canada is covered, thats where I order it from.

 

[alice1]

Ok first Dr Klimas isn't testing for xmrv yet.
I don't know if it's covered by my insurance but if I get a letter from my doc here they probably will.Hopefully!!
A blazing trail...thankyou.I think everyone here is.
It hit me today how pissed I am that I couldn't get one freaking doctor here to do these types of tests.The low NK cells could of been treated years ago and I probably wouldn't have gone through 2 cancers.
I so,so,so want to respond well to the Imunovir,that when I feel well I'm hitting the press.I knew when the time would be right and that is when.So I'll take all good thoughts and prayers to be better because I would love to be able to help others
and put the spotlight on this huge downside with the system here in Canada.
I'll get over being pissed but it's what I'm feeling so I'm letting it out.
Thankyou for your support.It helps so much.
I just read your post calzy..that gives me such hope..

 

[cfs since 1998]

I just recieved the results and of course my fax ran out of ink with the IgM and IgG but I'm hoping it's stored so when I replace the cartridge I'll have it.
I do have the recommended doses= 1 cap three times daily(500mg)first week,weekend off.
Week 2,2 caps three times daily,weekend off.
Weeks 3,5,7 repeat week 1
Weeks 4,6,8 repeat week 2
There is a risk of gout or renal stones but by taking the weekends off this is rare.
Give it 4 months to judge response rate and at 6 months a repeat of lab work.
Please remember this is my protocal.I certainly understand the need to try whats out there but I would feel terrible if this did harm to anyone doing what is recommended for me.
If you try this I certainly wish you the best and that you'll feel better.

Thank you for posting!

As far as gout, that is because it can increase uric acid, but Dr. Cheney has said that CFS patients seem to be low in uric acid already (MS patients are too). However this might not apply to everyone.

If your insurance doesn't cover it you can find isoprinosine at a decent price at goldpharma.com. With the dosing scheduling you gave above it would be about $60 a month including shipping and a "prescription fee" that they charge. If you order multiple months at a time it will be a bit cheaper, and since international shipping can take awhile it would reduce the chance you'd run out before receiving more.

 

[alice1]

Thankyou for the info cfs that is great to have.
I'm done being pissed but it put a fire under my butt regarding the press so that's good,otherwise it's exhausting
Sue I sent you a message.Hope you're doing better.love Alberta
I just called the pharmacy and they had to order it so tomorrow is my start date.Also my insurance does cover it,lucky me!

 

[ukxmrv]

Good luck Alice.

I took Imunivor for about a year and had markedly less sore throats and glands over that time

 

[aquariusgirl]

ukxmrv...so why did you quit taking it?

 

[zoe.a.m.]

Ok first Dr Klimas isn't testing for xmrv yet.
I don't know if it's covered by my insurance but if I get a letter from my doc here they probably will.Hopefully!!
A blazing trail...thankyou.I think everyone here is.
It hit me today how pissed I am that I couldn't get one freaking doctor here to do these types of tests.The low NK cells could of been treated years ago and I probably wouldn't have gone through 2 cancers.
I so,so,so want to respond well to the Imunovir,that when I feel well I'm hitting the press.I knew when the time would be right and that is when.So I'll take all good thoughts and prayers to be better because I would love to be able to help others
and put the spotlight on this huge downside with the system here in Canada.
I'll get over being pissed but it's what I'm feeling so I'm letting it out.
Thankyou for your support.It helps so much.
I just read your post calzy..that gives me such hope..

I'm really still new to people out there seeing doctors who test for infections and immune things, but no one did an NK cell test or immune workup when you went through 2 cancers--that's unbelievable!

Like everyone else here, I'm so grateful to hear you sharing your diagnoses and protocol! It's really exciting just to know it's happening more and more often.

Do you know which lab or what EBV tests were ordered? I had a test done but did not have the Early Antigen done that others on the board have listed and I'm curious as to how Dr. Klimas diagnosed it. Thanks for any help and good luck with the Immunovir!