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Famvir or not?

satoshikasumi

Senior Member
Messages
113
I understand your point about the cognitive issues. Dr. Kogelnik likes Famvir because it crosses the blood-brain barrier more easily than Valcyte. However, it has much weaker activity against HHV-6, CMV, EBV than Valcyte so he usually uses higher doses. Famvir has high activity against VSV (shingles virus) and herpes simplex and works at pretty low doses for them. Insurance companies will often pay for higher doses when the doctor takes the time to write them a detailed letter explaining why the higher dose is medically necessary.

There is no guarantee as to whether an insurance company will approve a certain treatment, but you can't just assume they will deny everything.

Of course, I am a US patient so I can't give any advice on whether socialized medical systems like UK NHS will pay for things.
 

heapsreal

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Messages
10,076
Location
australia (brisbane)
Theres just something to famvir. I wish they would look into it abit more, but if its an old drug they dont seem interested as they cant make money on it. Good if there was a way to improve famvir, tweek it abit?

cheers!!!
 

niall

Senior Member
Messages
100
Location
Florida
My experience with famvir is good. I have used low doses compared to what is commonly prescribed in cfs, 250mg twice a day and been on it for over 2 years. I havent had any die of symptom and my liver function has been good the whole time. I have ebv/cmv and famvir at this dose has lowered my high lymphocytes which indicates these infections are ongoing and have responded to this treatment. I always tell people its not a cure but can improve cfs symptoms, for me i think these viruses reactivate due to my low nk function. Until theres a cure for nk function i think these av's are going to be needed for along time until one can come off them ???

A one month trial probably wont tell u if its going to improve you but can help u find out if your going to have a bad reaction to it. give it a good 3-6 months to make a judgement on whether its helping. www.magicpharma.com sell famvir at a good price .

cheers!!!

Hi Heapsreal, Very glad to know the Famvir is helping you at the low dose. Can you tell me if there is a doctor where you live in Australia who would be willing to write a prescription for a patient who showed evidence of reactivated herpes viruses (EBV & HHV6) ? Do you know of a good CFS/ME doctor in your country?
 

heapsreal

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Messages
10,076
Location
australia (brisbane)
Hi Heapsreal, Very glad to know the Famvir is helping you at the low dose. Can you tell me if there is a doctor where you live in Australia who would be willing to write a prescription for a patient who showed evidence of reactivated herpes viruses (EBV & HHV6) ? Do you know of a good CFS/ME doctor in your country?

Dr Gary Deed in Brisbane, he works at Mediwell Medical Centre at Cooparoo, Brisbane.
hope this helps.

cheers!!!
 

Dolche

Dolche
Messages
25
Hey Heaps. Dr. Dantini told me that he spoke to the researchers who were in the labs doing the clinical studies on Famvir. The market was in need of a better drug for HSV 1 and that is what they were getting approval for. At the time, no one cared about HHV6. According to Dantini they told him that Famvir was effective for all of the Herpes family of virus' we speak of on here and Parvo as well. Dantini was looking for a cure for his own CFS/Fibro at that time and was doing a lot of digging. There was no Valcyte at that time. He continues to use Famvir as his first anti-viral of choice for all of the Herpes virus'. At the time we were treating my HHV6, EBV, and CMV. He could have been lying??? All I have is his word of mouth. He does do phone consultations for a fee of course. I didnt like the side effects of Valcyte though and was willing to give Famvir a go. My HHV6, as I have said, DID come way down. I have also mentioned that my Doc LOVED Valclyte and kept trying to switch me over insisting Famvir could not get in where Valcyte can. He just recently quit prescribing Valcyte at all. He said Famvir is providing the same results without the side effects. This is huge as he has treated over 500 people with Valcyte.

Here in the United States, I dont see getting a doctor or insurance to prescribe or pay for dosing much beyond 500mg, 3 times a day. If a higher dose could get deeper I would be more than willing to give it a go. I still need to have some kind of information for my doctor and back up for my insurance to even stand a chance. This is why I am trying to figure out if others are dosing SO high, and if it is necessary. If those virus' are digging way deep and I can get them up with an atom bomb of Famvir, Im all for it.

Satoshikasumi, can you please provide links that might help me understand the high doses you speak of?

FYI, my doctor (not saying he has the answers but he does really try to help us) says for me to take 2 of the 500 mg pills at once every few days. I guess hitting with a higher dose at once from time to time gets in deeper. I think I should have him explain that again and I actually have not tried it.

I also agree that anti virals might be a forever thing if we dont figure out how to get out immune system back on track...
satoshikasumi

My experience was that my Doctor added Famcyclovir(sp) 500 mg twice a day on top of Valcyte. I ended the Valcyte after 14 months and I am now a candidate for GcMAF because of my Nagalase levels. Although I discontinued the Valcyte I am still on the Famcyclovir. What was interesting is that I added the Famcyclovir 500mg 2X a day after I had been on the Valcyte for six months. The Famcyclovir really made an improvement on my cognitive issues. I could and can think better on Famcyclovir! I don't question the why of it because it helps. If you check my home page you will see I am XMRV positive and have all the evil chronic su-infections of EBV, HHV and CMV etc etc etc......Hope this helps. No side effects on this med for me. Good Luck Satoshikasumi.
 

Dolche

Dolche
Messages
25
Theres just something to famvir. I wish they would look into it abit more, but if its an old drug they dont seem interested as they cant make money on it. Good if there was a way to improve famvir, tweek it abit?

cheers!!!
 

Dolche

Dolche
Messages
25
I will be trying famvir 250 mg. 2x day and night. However, I'm so sensitive. After day 2 I feel mire tired. I guess it's working??? I hope.

Dolche
 

heapsreal

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Messages
10,076
Location
australia (brisbane)
I will be trying famvir 250 mg. 2x day and night. However, I'm so sensitive. After day 2 I feel mire tired. I guess it's working??? I hope.

Dolche
Maybe stick with it abit longer, sometimes its hard to tell if increased symptoms are just the normal cfs/me ups and downs. If you feel its intolerable then back off to 250mg once a day and when u feel ok with that then try increasing it to twice a day. As mentioned above some are having better affects with high dose famvir then valcyte but thats something that one can build upto, as i have said 250mg twice a day helped me. I feel the valcyte seems to get in 'deeper' then famvir but then i havent tried doses of famvir at 500mg 3 times a day, which is an option when i finish valcyte and if viruses reactivate again??

good luck.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
sato...who is your doctor if you don't mind me asking?


anyone get kidney problems with famvir?

Famvir is said to not have possible side effects of kidney stones like valtrex, so if prone to kidney stones then famvir is the better option. I have been on famvir for awhile and my liver and kidney function test as always been good. I also think using NAC and lipoic acid have possibly helped protect me from possible liver kidney problems from antivirals.
 

Xandoff

Michael
Messages
302
Location
Northern Vermont

Hi, Nice to be quoted here! I am in favor of taking Famcyclovir 500mg twice a day, it makes all the difference for me. I take it with Gabapentin (Neurontin 600mg). I must say though that I did not have any side effects with Valcyte, but we are all so different. I think Valcyte did a better job of knocking down these chronic infections and would go back to it but I am on GcMAF now and that is whole different story. I have changed my Avatar to the Aqualung motiff. Famcyclovir is a great help to me. Hope this helps.

You poor old sod, you see, it's only me.
 

aquariusgirl

Senior Member
Messages
1,732
so sato were you on 2000mg of Famvir x4 a day? or is there anyone else that has tried this protocol and had success knocking down cmv, hhv6 et al? Just wondering what results kogelnik is getting with this protocol?
 

clive powney

Senior Member
Messages
206
Location
coventry
Just ordered my famvir from magicpharma.com - cost is around £140 per month for 500mg 3x per day. I am going to try this (assuming I have no major reactions) for 6 months. From Heapsreal's experiences has suggested that I use with NAC and lipoic acid - anyone else have any other suggestions based on their experiences please?
 

Aileen

Senior Member
Messages
615
Location
Canada
I see 2 different brands listed on magicpharma. I think I read somewhere someone's doctor said Cipla brand was ok? Does anyone know if Macleods is a good brand?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Clive hope you do okay on the famvir, personally I can't tolerate NAC and also check about the use of alpha lipoic acid if you have amalgam fillings (being in the UK you probably have)
 

clive powney

Senior Member
Messages
206
Location
coventry
Clive hope you do okay on the famvir, personally I can't tolerate NAC and also check about the use of alpha lipoic acid if you have amalgam fillings (being in the UK you probably have)
maryb - what is the link to amalgam fillings? - I have loads
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
quote="clive powney, post: 306151, member: 419"]just looked - think i will steer clear of ALA!![/quote]

Thats what I thought clive:eek: