my famvir trial

[Seven7]

I think is very counteractive for ME to provoke that state, it will only crash you and suffer for no reason. Start slow and titrate, if you are getting that bad means you went too fast up. My CFS Dr always says only increase when there are no side effects, if you do have side effects stay in current dose or go back to the one without symptoms.

I started 1/2 pill (250mg) once a day for 2 weeks, then 1/2 2 times a day for 2 weeks, then 1/2 3 times a day for 2 weeks, then the 2 pills a day.

Best of luck.

 

[Rrrr]

@Inester7 i agree that the worsening of our state is not good for us. i think my doc meant that if i DO feel slammed from the famvir, it means it is going to be effective in the end, in the long run, for me. but he is all for starting at a lower dose. we talked about doing 500 mg per day for a while, then going up to 500 2x day.

did you feel a lot worse on the famvir? or did your titrating up help you avoid feeling a lot worse?

 

[heapsreal]

i saw a new doc today and we discussed how i'm going to start famvir in 2.5 wks, and he said that if i get really sick from it -- hard and fast -- then that is a good sign that we are going after the viruses. if i don't feel a lot worse, then it is less likely to help me in end. is that what others have experienced?

Hasnt been my experience with famvir. no negative problems but slowly improved. The first 6 months i didnt notice improvement as such but did notice i didnt crash for that 6 months which was extrememly rare for me at the time. When i did crash it was alot shorter crash and not as severe. it was after 6 months that i noticed i started feeling better.

Normal people who get mono feel bad for upto 6 months before recovering, so i think with us once we stop the virus reactivating and replicating then we are in that post viral state which takes time to recover from like a normal person with mono. This is why i think it can take awhile before one notices improvement. Our body is worn out and it takes time to recover, the av's have hopefully stopped our bodies coping a regular hit. I think this is when fixing hormones that are low etc can help with recovery.

I found 250mg a day worked for me. i did try higher doses like 500mg twice a day and 500mg 3 times a day and didnt notice any different to the lower dose of 250mg twice a day.

 

[clive powney]

I carried on seeing him for once a year until my m.e became severe and I could no longer travel to Birmingham. At the time he didn't have any suggestions other than thyroxine meds. He did say I could perhaps try cortisol. By that time I was seeing dr Patel at the George Eliot who prescribed hydrocortisone as my blood test showed low cortisol levels. Hope Dr Skinner can help you

Anniekim,
You cant be far from me I went to Dr patels clinic also but I saw one of his other male doctors Dr Nadir?? He was the most arrogant tw£t I have ever met in my life. I ended up making a complaint about him. He ignored my 9 years of tests ignored what I had to say to him, told me to go and look at CBT and GET and the Oxford criteria and gave me a sugar level bloofd testing machine. It took me a week to test my blood at home and when I phoned up with the results the nurse said oh, they are ok are they. Never mind we dont need to see them , just make another appointment. I tried and it was nearly six months away. Considering I had waited over 3 months for the first test, that meant in 9 months I had had my sugar levels checked and these were ignored anyway!!

 

[Rrrr]

i'm so sorry, clive, for all you have had to put up with. it is a horror show. really.

 

[Rrrr]

Hasnt been my experience with famvir. no negative problems but slowly improved. The first 6 months i didnt notice improvement as such but did notice i didnt crash for that 6 months which was extrememly rare for me at the time. When i did crash it was alot shorter crash and not as severe. it was after 6 months that i noticed i started feeling better.

Normal people who get mono feel bad for upto 6 months before recovering, so i think with us once we stop the virus reactivating and replicating then we are in that post viral state which takes time to recover from like a normal person with mono. This is why i think it can take awhile before one notices improvement. Our body is worn out and it takes time to recover, the av's have hopefully stopped our bodies coping a regular hit. I think this is when fixing hormones that are low etc can help with recovery.

I found 250mg a day worked for me. i did try higher doses like 500mg twice a day and 500mg 3 times a day and didnt notice any different to the lower dose of 250mg twice a day.

thanks, heapsreal. this is very helpful. -- rrrr

 

[Seven7]

I felt a lot of pain (latic acid like) but again I get that every time I up any medicine no matter how slow I go. Overall not too bad, not other side effect that I noticed. I feel Soooo much better, not sure which of the ones is doing the trick. My main thing is from Av a clear head, I had a constant buzz, inflamation feeling... and that has gotten so much better.

 

[Rrrr]

lnester7 you wrote that you are doing soooo much better but are not sure of which ones are doing the trick. can you remind us of what you are on? i know it is famvir. but what else could possibly be making you feel better? and how do you know that the AV is what is clearing yr head? (by the way, i'm very happy for you! and hopeful for me.)

clive, do you mind that we are discussing famvir in general on yr thread? i don't want to hijack it.

 

[clive powney]

lnester7 you wrote that you are doing soooo much better but are not sure of which ones are doing the trick. can you remind us of what you are on? i know it is famvir. but what else could possibly be making you feel better? and how do you know that the AV is what is clearing yr head? (by the way, i'm very happy for you! and hopeful for me.)

clive, do you mind that we are discussing famvir in general on yr thread? i don't want to hijack it.

no probs mate - any info on famvir's use and outcome is welcome and would be helpful for others in the future

 

[Rrrr]

did folks see, there is a phx rising article on vertigo on the front page right now? http://phoenixrising.me/archives/16756

 

[Seven7]

I know is the famvir because is the only thing I added in about a year and it was way too noticeable slow improvement but was there from the first days I took it.

For inmune system (raise NK and T cell and mod cytokines): Inmune mod: Imunovir alternate weeks 3 pills, 4 pills.
Vit C 2000mg /day, COQ10 200mg 2/day, Fish oil 2000mg 2/day, b12 as needed, C as needed.
For OI: Be upright longer and less PEM.
midodrine 2.5 every 4h. florinef 0.1 2/day,
To control coinfections:
Famvir 250mg 2/day. equillirant 2pills 2/day,
Sleep: Trazadone 200mg, temazepan 15mg.
Thyroid: Cytomel 0.5, 50mg synthroid.

 

[maryb]

did folks see, there is a phx rising article on vertigo on the front page right now? http://phoenixrising.me/archives/16756

Yes with great interest - how many of us had those symptoms.........and the docs poo hoo it. Its a pattern you fools.
One thing I wanted to mention - I cover my ears when I have a shower, don't let any water get into them - just clean them with buds. I had a inner ear virus years ago when I did a lot of swimming, the doc said I'd picked it up from the water and said keep the ears dry so I do. I daren't say anymore - I am in mortal fear of the V returning.

 

[Rrrr]

I know is the famvir because is the only thing I added in about a year and it was way too noticeable slow improvement but was there from the first days I took it.

For inmune system (raise NK and T cell and mod cytokines): Inmune mod: Imunovir alternate weeks 3 pills, 4 pills.
Vit C 2000mg /day, COQ10 200mg 2/day, Fish oil 2000mg 2/day, b12 as needed, C as needed.
For OI: Be upright longer and less PEM.
midodrine 2.5 every 4h. florinef 0.1 2/day,
To control coinfections:
Famvir 250mg 2/day. equillirant 2pills 2/day,
Sleep: Trazadone 200mg, temazepan 15mg.
Thyroid: Cytomel 0.5, 50mg synthroid.

thanks! i was thinking of trying the immunovir with the famvir, too. and also thinking of trying the florinef again with the famvir. when i did it 20 yrs ago, i felt "healed" for 2 months. then i got super sick and depressed from it. as soon as i stopped it, the depression lifted.

 

[Rrrr]

Yes with great interest - how many of us had those symptoms.........and the docs poo hoo it. Its a pattern you fools.
One thing I wanted to mention - I cover my ears when I have a shower, don't let any water get into them - just clean them with buds. I had a inner ear virus years ago when I did a lot of swimming, the doc said I'd picked it up from the water and said keep the ears dry so I do. I daren't say anymore - I am in mortal fear of the V returning.

what i wonder is if we all have the virus already, like herpes simplex virus. as this article says, it is a main cause of vestibular issues (vertigo, etc).

HERPES SIMPLEX VIRUS CAUSES VESTIBULAR NEURITIS
- HSV is a leading cause of vestibular neuritis! See this paper, especially citations #43-52, which list published studies that found HSV causes vestibular issues: http://www.tampabayhearing.com/vestibularneuritis.php#21

 

[maryb]

Rrrr
Could well be - am seeing a doc next week, I had sky high HSV1 &2 levels on recent blood tests, so maybe try some acyclovir,be interesting to see what she recommends.

 

[Rrrr]

Rrrr
Could well be - am seeing a doc next week, I had sky high HSV1 &2 levels on recent blood tests, so maybe try some acyclovir,be interesting to see what she recommends.

personally, i'd ask for famvir over acyclovir. at least that is what i'm about to do. that is why i'm on this tread.

 

[maryb]

Rrrr
I just really don't know- acyclovir has worked so well for some people - its the oldest longest tested drug isn't it for HSV? I took Valtrex for a short time a while ago, my hair started falling out....Thats why I'm so wary now.

 

[Rrrr]

yikes. i have been losing my hair for 2 yrs now. so i understand. i just heard that famvir is better. but i supposed it is diff for each of us. famvir goes after both HSV and Herpes zoster, too, tho, and acyclovir does not, right? or am i wrong?

 

[maryb]

No I think acyclovir is for both HSV and HZV- the one it doesn't target is CMV.

 

[clive powney]

week 28 - 2 crappy and 5 indifferent days. My cold still lingers on and on. Got a bit of a sore throat back as well. Booked to see Dr Skinner on 6th June after a short fight with the docs about my thyroid levels.
I looked back at my previous tests

..........2003 ..........2006 ...........2008 ..........scale
tsh -----3.92 --------3.38 ----------1.75 ---------0.27 to 4.2
t3 -------n/a ---------5.3------------ 4.9 ------------4 to 6.8
t4 --------n/a -------15.5 -----------14.4 ----------12 to 22

Dont know if I am just trying to read things into this (any doctors please chip in) but my tsh was pretty high in 2003 and 2006 and is now about right. But it is over 100% different and has declined continuously??
My t3 and t4 levels are quite low and have declined , surely if my tsh is now ok my t3 & t4 should be higher?? if and this is a big if i presumed my t3 and t4 have declined from 2003 to 2006 then my levels would have been nearer 6 and 17 respectfully. In 2003 I was about an 8 out of 10 healthwise , in 2006 I was about a 7 and in 2008 I was just scraping a 6.
Am I just clutching at straws? i have heard somewhere that t3 and t4 levels shoul be in the upper 1/4 (i.e around 6 and 17 ) and tsh is better in the bottom 1/4 i.e around 1.