Currently ill on valtrex - thinking of switching to famvir.

[vamah]

For hhv6, do you mean 1:320? That is certainly considered high enough to treat with valcyte.

The CMV is probably reported that way because less than 90 is not considered significant. Most of these viruses everyone has been exposed to and will have some antibodies for. It is the level that is important.

 

[nofuture]

Ill check again with the nurse. That's what she said it was . Its still high though.

 

[heapsreal]

@heapsreal Im taking 1.5 grams 4x Daily. Just got that extended 1 more month to cover until the 22nd which should be when i will get Dr. Lerner's prescription for valcyte.

-At the moment its too soon to tell. Im making progress overall but still crashing. B12 is helping with fatigue.
- Another thing that is similar to you is that I do crash even if i just miss a dose without waiting a day, rather than waiting a long time to crash. Which gets me thinking that i know its doing its job, but is it enough for remission long term.
based on the results of the labs:

HHV6
IgG 1:32
IgM 1:20
The hhv6 is high should be ~ 1:80

New Cmv results
IgG & IgM <0.90
- I was mad there was no specific number for this. But retesting will let me know.

I have a feeling >1 (igg) is considered active for cmv but different labs/countries have different rangers/readings?

If those are after being on famvir then its lowering cmv, but also i think it takes time generally to lower titres as sometimes they initially go up.

Thats a whopping dose of famvir, go by what your doc has prescribed but just letting you know that many use alot lower and doses vary alot, for me 250mg twice a day was enough, a common dose is 500mg 2-3 times a day. Maybe the high dose your on could be making you feel ill too, just a thought.

I dont really understand the multiple dosing strategies for ebv/cmv/hhv6 as they replicate rather slow, the multiple dosing is generally for shingles and gential herpes which replicate alot quicker, also famvir has a short half life but is said to have a rather long intracellular half life of like 18hrs. This is why i just dose twice a day. food for thought?? I suppose we just dont know, we are trail blazing.

cheers!!

 

[nofuture]

@heapsreal Thanks man! Yes. All the crashing side, I made more than 75% improved within the last 3 weeks than at any point in time during the last two years of illness. B12 methyl supplementation is doing that last bit, because I am still a little bit "numb" mentally after eating or exercise. So I feel that its doing its job. From what people have said on this forum I have a milder forum of the virus.

As far as the dosing is concerned, I am following Dr. Lerner's protocol. I am not going completely blind into the treatment. My theory is that by attacking this virus until i see him I am able to lower the chronic viral load. Also, thee titer tests have been taken before I gave famvir enough time to work.


-What I noticed so far from my experience and research is that my RBC count was affected along with my endocrine system.
-While on famvir the blood tests came back normal and the doctor showed that my red blood cell count has improved. before it was at the lower limit.

-Getting that back to normal once the infection is cleared should bring me back to 100%
- I am glad I took this semester off from my graduate studies, because I would have failed no doubt.
- I could not concentrate on academics or even myself.

I am fortunate that I am getting better because these last 2 years have been hell for me. No doubt the hardest battle of my life.

Thanks again for the support.

 

[nofuture]

Week 4 on famvir update: Energy 7/10:

5 good days >85%
3 bad days <70%

More/ less same symptoms as week 3
-Missing doses causes me to become more
tired
-Sleep is improving.
-Weight is being lost
-lots of phlem


- I crashed a couple of days after exercise but i was still able to be functional.
- I don't know whats going on with my appetite. Its not good.
-I have this weird felling that I am getting better but my symptoms are getting worse. Maybe its a "herx"

Seeing Dr. Lerner on Friday

 

[nofuture]

Week 5 on Famvir update: Energy 8/10:

Crashing here and there
Symptoms reverse if i don't take the med
It is helping but i go backwards if I don't take it
Saw Dr. Lerner. He did many tests, and I still have a couple left to do.
-He was mad that I started treatment my own.
-I told him i tried everything as i was very ill.
I'm sure he is an expert at what he is doing, but i will continue to use famvir until i get a treatment plan because I don't want to sleep all day long .


New treatment begins in a coupe of weeks.

 

[vamah]

Week 5 on Famvir update: Energy 8/10:

Crashing here and there
Symptoms reverse if i don't take the med
It is helping but i go backwards if I don't take it
Saw Dr. Lerner. He did many tests, and I still have a couple left to do.
-He was mad that I started treatment my own.
-I told him i tried everything as i was very ill.
I'm sure he is an expert at what he is doing, but i will continue to use famvir until i get a treatment plan because I don't want to sleep all day long .


New treatment begins in a coupe of weeks.

Kind of confused about him being mad about starting treatment on your own. You had to have a doc write you a prescription for for famvir, yes? So not on your own, but must with different doctor.

Wondering why you seem to keep experimenting with taking/not taking famvir when you feel much better with it. If it is helping you that much, that is terrific. Just keep taking. I wish I saw such obvious improvement with valcyte, but can take a long time.

 

[nofuture]

Yes. I started Famvir with a doctor's prescription. I take it on a daily basis and skip a dose if i get headaches. The biggest thing about this med is that it works very well, but sometimes if I miss a dose I will relapse. I'm not in the clear, i'm just managing. I was feeling really good when I saw him. Now im just ok.

I do agree about it taking a while. I have to get additional testing before seeing him in two weeks.

 

[nofuture]

Week 5 on famvir update: Energy 8.5/10:
This week I noticed some major changes.
-My energy is better and more consistent
-My cognitive function has improved
- My irritability has decreased
However, i'm getting some weird side effects as well.
It feels like mononucleosis is occurring again.
- I have headaches, painful lymph node pain on the left of my neck, and low appetite
- While this goes on I do have the ability to still do what I want
- I find life more enjoyable now

I am seeing doctor Doctor Lerner in a week for treatment.

 

[heapsreal]

My wording might not be 100% but i think there is a difference between reactivation and replication.

I think reactivation is when the virus wakes up and causes issues, replication is when the virus multiplies.

Again im not 100% but antivirals only stop replication of the viruses not the reactivation but when the viruses reactivates it gives the av's a chance to damage its ability to replicate so over time the viral load goes down as the virus naturally die off. This is why i think its important to stay on antivirals for along time. Everytime the virus reactivates there is less of them to cause issues when on av's so the 'crashes' become less intense over time. This is my experience anyway.

So even while on antivirals one can still have issues with the viruses 'playing up' but severity will slowly decrease hopefully.

 

[nofuture]

I agree. I reached a stage where i am more aware of the things around me but at the same time lymph nodes and dizziness is becoming an issue. Definitely a hard couple of days dealing with these issues. This virus absolutely crashes me with any kind of physical excretion, weather its cardio or exercise.

 

[nofuture]

Week 6 on famvir update: Energy 7/10:
Towards the end of this week i ended my anti-vial treatment (bacterial not viral)


Lyme treatment:
- I came back from Dr. Lerners office.
- I have Lyme disease and fungus infection
-I am getting Itraconazole 2 daily for 1 week, then 4 daily second week.

-Then I will visit him for intravenous treatment (1 month)
-After is 3 month supression therapy.

I never knew I had lyme i guess that's why my 4th toe is inflamed on my foot

Hopefully this diagnosis is accurate.

 

[vamah]

I'm sorry you have lyme, but it is good that you have a diagnosis. Good luck!

 

[barbican1]

I agree. I reached a stage where i am more aware of the things around me but at the same time lymph nodes and dizziness is becoming an issue. Definitely a hard couple of days dealing with these issues. This virus absolutely crashes me with any kind of physical excretion, weather its cardio or exercise.

maybe you were used to regular workouts before your symptoms, probably it is a good idea to reduce physical exertion, but not completely stop the exercises

 

[Valentijn]

maybe you were used to regular workouts before your symptoms, probably it is a good idea to reduce physical exertion, but not completely stop the exercises

You are completely wrong. Exertion is extremely harmful for most ME/CFS patients, and I dare say that "regular workouts" are a waste of limited resources for all ME/CFS patients.

Perhaps you're looking for a fatigue forum, rather than an ME/CFS forum? I'd recommend you have a read of the CCC and ICC definitions and cited research to understand the disease which most of us are dealing with.

 

[barbican1]

You are completely wrong. Exertion is extremely harmful for most ME/CFS patients, and I dare say that "regular workouts" are a waste of limited resources for all ME/CFS patients.

Perhaps you're looking for a fatigue forum, rather than an ME/CFS forum? I'd recommend you have a read of the CCC and ICC definitions and cited research to understand the disease which most of us are dealing with.

I said it's a good idea to reduce exertion - read my post again. If you agree with that, then your post is redundant

or maybe you have too much free time on your hands?

 

[Valentijn]

I said it's a good idea to reduce exertion - read my post again.

You recommended she continue exercising. Which is harmful for ME/CFS patients, especially ones who are crashing from "any kind of physical exertion".

 

[nofuture]

@Valentijn I am a male not a female. Yes I will have to stop exercise during the 1 month because I will get a PICC line. I will die if i don't.

 

[heapsreal]

i think deconditioning is going to be a problem for people how have had cfs/me for a long time, any chronic condition is probably going to be the same.

I think exercise or activity is important but i think what barb is trying to say is to stay within your limits, which doesnt just mean within that session but some type of activity that doesnt cause PEM. There are some that arent able to do much at all, its a personal limit that individuals have to work out. Yes there are times when we cant or shouldnt exercise or be active, obviously we shouldnt be pushing ourselves but easier said then done.

 

[nofuture]

After 2 1/2 years of trying exercise over and over and fatigue becomes part of daily life you realize that its causing more harm than benefit. You are tired all the time after getting exercise You feel great working out, and are depressed the next day. I don't care anymore. I decided to drop it not because I can't, but I realized its pointless.