Vaclyte best protocol ?!

[vamah]

SOC: That's interesting because my symptoms were only neurological for a long time, so I'm sure the virus is seriously in my brain. Which means the Montoya protocol is a good idea for me.

Omar: That's nonsense about HHV-6. Everyone has it, but it can reactivate and you should have your level tested.

 

[SOC]

SOC: That's interesting because my symptoms were only neurological for a long time, so I'm sure the virus is seriously in my brain. Which means the Montoya protocol is a good idea for me.

That's great! About the right treatment, not the neurological infection. Sounds like you have a good doc on your side. Wish we all had that.

Omar: That's nonsense about HHV-6. Everyone has it, but it can reactivate and you should have your level tested.

Agreed. That's nonsense about HHV-6. It works like the other herpesviruses your doc is treating, Omar. However, if your doc is using Valcyte to treat CMV then it should be simultaneously be treating any HHV-6 you have, so it may not matter significantly if he "believes in" chronic HHV-6 or not.

 

[RUkiddingME]

SOC: Thanks for your post. I talked to my specialist, who felt that both the Montoya and Lerner protocols had their points. I have still decided to start with the higher dose, since I usually tolerate medication fairly well. If I have problems, I may switch to the lower dose protocol.

Hi vamah, good luck! I have also started at the higher dose with no problems 7 weeks ago. I have been blogging my experience on here called Valcyte 2013 if it helps.

 

[vamah]

That's great! About the right treatment, not the neurological infection. Sounds like you have a good doc on your side. Wish we all had that.

I have a friend who says that what it takes to be a good doctor is compassion and a prescription pad. I do have a good doc now -- one who will admit when he is skeptical or doesn't know about something, but is willing to learn and to try things as long as he feels they will not do me any harm. I struggled for a while to get Kaiser doctors -- who think they know everything already and had me diagnosed as a drug-seeking hypochondriac 5 minutes after I met them -- to listen to me and finally decided to pay out of my own pocket for a real doctor until I can switch insurance later this year. I'm fortunate that I can afford to do this.

 

[patient.journey]

Hi vamah, good luck! I have also started at the higher dose with no problems 7 weeks ago. I have been blogging my experience on here called Valcyte 2013 if it helps.

I can see that you are taking LDN while i cant get it in this country, where do you get that from ?

 

[patient.journey]

My first day on Valcyte wish me luck guys

 

[heapsreal]

My first day on Valcyte wish me luck guys

good luck, hang on for the ride.

cheers!!

 

[SOC]

My first day on Valcyte wish me luck guys

Good luck! Keep us current on how you're doing.

 

[vamah]

My first day on Valcyte wish me luck guys

Good luck. I'm on day four -- feeling tired and achey, but ok. Be sure to get plenty of rest and take vitamin B-50 and fish oil to help your immune system. Chlorella can help get toxins out of your system. Keep us posted on your progress.

 

[RUkiddingME]

I can see that you are taking LDN while i cant get it in this country, where do you get that from ?

Best of luck Omar88 with the Valcyte and keep us posted. About the LDN. My ME/CFS doctor in Canada prescribes for me, it then has to be prepared by a compounding pharmacy. Before LDN I was completely bed ridden for 9 months and had to go down the stairs in my house on my bum to get to appointments. It loosened my muscles and helped with the weakness plus I was able to nap in the daytime for the first time since the onset of my illness. It has been a miracle drug for me. There is lots of info about LDN online, I hope you can get your hands on it.

 

[vamah]

My first day on Valcyte wish me luck guys

I'm wondering how you are doing. You started valcyte just a few days after I did and I am just starting to not feel like total crap. Hope you are hanging in there. Remember that a bad die off reaction is good -- it means you are killing something seriously bad.

 

[patient.journey]

I'm wondering how you are doing. You started valcyte just a few days after I did and I am just starting to not feel like total crap. Hope you are hanging in there. Remember that a bad die off reaction is good -- it means you are killing something seriously bad.

Am feeling bad and i have some strong symptoms

 

[vamah]

Am feeling bad and i have some strong symptoms

Don't worry about taking a day off or a single dose off if it becomes terrible. I took my morning dose off yesterday because I had something I HAD to get done and was feeling very shakey (couldn't get my fingers to work correctly!!!).
Felt better by the afternoon and still feeling better after taking meds last night and this morning. A short break won't set back treatment and lets you body clear out some of the toxins in your bloodstream.

 

[vli]

For us, Dr Lerner did 900 morning/450 night dosing for a year or so, then switched to 1350 mg in one morning dose to get the higher amount in the bloodstream to get at the tougher places. It's my understanding that he feels this is the pattern that most people tolerate best. Everyone is different, of course.

Don't mean to sound dense but this is the protocol I assume you stuck to in the two years you did it?

Also did I recall correctly that you didn't feel any changes at all in the first six mos? Thx!

 

[vli]

As I understand it, the higher doses are good for getting some med into brain tissue which is likely invaded in chronic HHV6. Not much Valcyte gets through the blood-brain barrier, so a higher dose means that at least a small amount gets in to help the brain.

SOC Thx for this, what's interesting tho is here: http://hhv-6foundation.org/clinicians/hhv-6-treatment It says valcyte is the most likely drug to get into the brain! I wonder if this might be why say, ppl report fewer SEs fr vistide BUT at the same time, their brain fog might persist more than on val because the vis never got to their brains???

 

[SOC]

Don't mean to sound dense but this is the protocol I assume you stuck to in the two years you did it?

Also did I recall correctly that you didn't feel any changes at all in the first six mos? Thx!

Yep, that's the protocol we used for the whole time. It was something like 6 months before I had any noticeable improvement. I also had the IRIS-like reaction, so it may be that it took 6 months for my immune system to get working again and start going after the HHV-6.

 

[SOC]

SOC Thx for this, what's interesting tho is here: http://hhv-6foundation.org/clinicians/hhv-6-treatment It says valcyte is the most likely drug to get into the brain! I wonder if this might be why say, ppl report fewer SEs fr vistide BUT at the same time, their brain fog might persist more than on val because the vis never got to their brains???

Certainly possible, but I don't really know. What I understood from what I was told is that Valcyte does get through the BBB, but not in large amounts. But I'm not a medical person, so I could have misunderstood.

 

[patient.journey]

I went down from 1800 mg daily to 900 mg , i felt sick in the first week after changing the dose but am better now , i can go through my day and more stuff thanks god ! i still have 4 months still on this dose then i will go to 450 mg for other three months ,,

I need your prayers guys cause am trying my best and this is the only thing i could use right !!

Am on other supplements trying to boost my immune system to take care of this illness when i finish my medicine trial !!

Every month i take some antibiotic cause i get an infection in my throat and while this infection starts i feel so bad until i finish my course and am not sure why i get this much of bacterial infections i really need an answer for that !!

 

[heapsreal]

I went down from 1800 mg daily to 900 mg , i felt sick in the first week after changing the dose but am better now , i can go through my day and more stuff thanks god ! i still have 4 months still on this dose then i will go to 450 mg for other three months ,,

I need your prayers guys cause am trying my best and this is the only thing i could use right !!

Am on other supplements trying to boost my immune system to take care of this illness when i finish my medicine trial !!

Every month i take some antibiotic cause i get an infection in my throat and while this infection starts i feel so bad until i finish my course and am not sure why i get this much of bacterial infections i really need an answer for that !!

Omar i sort of feel similar to u with the bacterial infections although my issues are with sinusitis. I feel like maybe my immune system isnt strong enough to keep bacterial infections away, then will my immune system be strong enough to keep cmv down once off valcyte??? Im using immunovir and my nk numbers have gone up some but i now cant get nk function test which is what we need to improve.

 

[patient.journey]

Omar i sort of feel similar to u with the bacterial infections although my issues are with sinusitis. I feel like maybe my immune system isnt strong enough to keep bacterial infections away, then will my immune system be strong enough to keep cmv down once off valcyte??? Im using immunovir and my nk numbers have gone up some but i now cant get nk function test which is what we need to improve.

Am not sure but i think the same

The problem is i couldnt run new tests to chick my CD4,CD8 and the other immune biomarkers beside i didnt find any lab in this country so i could run NK !!

Am stock with WBC account only until i find better lab or hospital