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my famvir trial

clive powney

Senior Member
Messages
206
Location
coventry
week 20 - 2 better and 5 indifferent days. Not much to say really on that front. My digestive system is still fine though. The kefir and colostrum have pretty much sorted out my IBS. I used to go to the loo up to 6 times a day with watery stools and undigested food (this went on for many years). After about 9 months of the kefir and colostrum I now go once a day at the same time and the constitution is exactly as it shoud be - and no undigested food. I also think that the xifaxan 2 week course has also helped tremendously with my lifelong gas problems.
 

clive powney

Senior Member
Messages
206
Location
coventry
Clive, can I ask where you get your colostrum from? Many thanks
Anniekim,
I get colostrum powder from a company called Neovite Colostrum - you can order it direct from their website, from amazon or ebay. I use their ebay route, I blend 1 teaspoon with a glass of kefir twice a day.

Clive
 

clive powney

Senior Member
Messages
206
Location
coventry
Week 21 - 4 better days and 3 indifferent. As my tablets are coming to an end and I have seen +ve results from others on 250mg twice a day , I have reduced my dose to the same. This means that I will have around 2 months worth left if I chop the 500mg tablets in half. This should increase the length of the trial to around 71/2 months instead of 6. This week has been quite a good week all in all and if I look back over the last 3 weeks I have only had 1 crappy day so I am trying to focus on the positives.
 

baccarat

Senior Member
Messages
188
If antivirals are going to help it can only be ascertained by making decisions in line with the facts of scientific studies.
Lerner has studied these antivirals longer than anyone else and his results show that it takes several months from 12 to 18 for real improvements to start, assuming the relevant av is used, depending on the type of virus.
It takes time for infected cells to be replaced by healthy cells which can only begin to happen after the virus has been inhibited from replicating from cell to cell for several months. Once the infected cells have died and the new ones have taken their place that's when improvements are felt.
On the other hand, according to those studies, av only help those with specific herpes infections whilst people with multiple chronic infections respond very poorly.
 

clive powney

Senior Member
Messages
206
Location
coventry
week 22 - 4 better days and 3 indifferent days. Seem to have picked up another cold but only mild. Had quite a reasonable week overall. Got my overall 'anxious' feelings back today which I havent had for a short while.
 

clive powney

Senior Member
Messages
206
Location
coventry
Week 23 - 4 better days and 3 indifferent. Still got a slight cold/nasal infection. Again had a reasonable week. Energy level is definitely up at the moment and I feel things are moving in the right direction.I still can't handle any stress whatsoever so I need to steer clear of even very mild streesful situations. I have increased my dose up slightly to 250mg 3 times a day and I am now thinking I should extend my trial at least on this dose or maybe back to 500mg 3 times a day.
Barracat mentioned above Dr Lerners guidelines on anti-virals - does anyone have a link?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Week 23 - 4 better days and 3 indifferent. Still got a slight cold/nasal infection. Again had a reasonable week. Energy level is definitely up at the moment and I feel things are moving in the right direction.I still can't handle any stress whatsoever so I need to steer clear of even very mild streesful situations. I have increased my dose up slightly to 250mg 3 times a day and I am now thinking I should extend my trial at least on this dose or maybe back to 500mg 3 times a day.
Barracat mentioned above Dr Lerners guidelines on anti-virals - does anyone have a link?

Sounds promising, the stress thing though could indicate adrenal dysfunction. Worth getting some hormone blood tests(testosterone dhea etc) and saliva cortisol. All this helps towards strengthening your immune system too. Sinus infections im starting to think are ongoing due to our crappy immune function.
http://www.treatmentcenterforcfs.com/cfs_publications/index.html
 

clive powney

Senior Member
Messages
206
Location
coventry
Sounds promising, the stress thing though could indicate adrenal dysfunction. Worth getting some hormone blood tests(testosterone dhea etc) and saliva cortisol. All this helps towards strengthening your immune system too. Sinus infections im starting to think are ongoing due to our crappy immune function.
http://www.treatmentcenterforcfs.com/cfs_publications/index.html
Thanks heaps. Have had testosterone dhea and adrenal saliva tests done in the past. Dhea was low and stagnant throughout the day, saliva cortisol showed poor adrenal function and testosterone was good. I tried over 6 months of adrenal cortex and dhea supplementation with no effect.
Just to add to my blog - I had a bit of a crash last night - I have been overdoing it as I have been feeling a bit better over the last few weeks and am feeling fluey today, quite tired and a bit sorry for myself, :(
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Thanks heaps. Have had testosterone dhea and adrenal saliva tests done in the past. Dhea was low and stagnant throughout the day, saliva cortisol showed poor adrenal function and testosterone was good. I tried over 6 months of adrenal cortex and dhea supplementation with no effect.
Just to add to my blog - I had a bit of a crash last night - I have been overdoing it as I have been feeling a bit better over the last few weeks and am feeling fluey today, quite tired and a bit sorry for myself, :(

Dhea had no effect as in didnt increase your levels or didnt notice any energy increases etc??
Im not sure if one with cfs/me is always going to get a feelable result with dhea etc, not until infections/immune system is being treated. I just think that if it tests low then it has to be good for your health to increase those levels to the mid to high normal range. With dhea there is enough evidence to show it helps immune function and also can help lower inflammatory cytokines that we produce. I dont think there is a one hit wonder but its a sum of the parts we put together. I think if u can buy dhea and or pregnenolone cheap enough then there is enough science behind it to make it worth throwing into the mix.

Just a thought;)
cheers!!
ps, thanks for keeping us all posted, it helps us all learn from one another.:thumbsup:
 

clive powney

Senior Member
Messages
206
Location
coventry
Week 24 - 6 crappy days and 1 indifferent. Now, I dont know if this week was due to the fact that I overdid it the previous week as I was feeling 'better' , or the fact that the slight cold I started getting on monday, stayed slight until thursday and then turned into a full blown one by Friday. I have had the worst week in many months and now have a very sore throat, cough, bunged up nose and thick green gunk in my throat that I cough up every now and then.
Whatever I say though , things have changed since taking the Famvir. I have had at least 3 quite heavy colds in the last 5 months since taking it - that is as many as I have had in the previous 5 years. I would like to think this is a dieoff but at least I can say for definite is that my immune system must be working in a different way than it had been previously.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Ive had that same change Clive but in my case I don't know what made the difference. After about 10 years of ME and the same "flu-like" symptoms I suddenly starting getting proper long colds and things like the winter vomiting bug. In my case it didn't resolve into a change for the better in the end. Still get all the new different bugs on top of the old ME "flu" symptoms.

Only someone with ME would tell the difference. I could invent a new section of the language based on the colds, flu symptoms that I have.

Hope that in your case it is the Famvir and all will resolve into better health.
 

clive powney

Senior Member
Messages
206
Location
coventry
Week 24 - 6 crappy days and 1 indifferent. Now, I dont know if this week was due to the fact that I overdid it the previous week as I was feeling 'better' , or the fact that the slight cold I started getting on monday, stayed slight until thursday and then turned into a full blown one by Friday. I have had the worst week in many months and now have a very sore throat, cough, bunged up nose and thick green gunk in my throat that I cough up every now and then.
Whatever I say though , things have changed since taking the Famvir. I have had at least 3 quite heavy colds in the last 5 months since taking it - that is as many as I have had in the previous 5 years. I would like to think this is a dieoff but at least I can say for definite is that my immune system must be working in a different way than it had been previously.
Week 25 - 4 crappy and 3 indifferent days. I still have this cold , it is one of them that gets stuck in your throat overnight, so you cough up crap in the morning for a hour or so , then feel a bit better through the day then your nose starts to bung up at night again. It seems to cause me to wake in the night as stuff runs down my throat and my brain thinks I am choking, so it has effected my sleep quite badly.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Week 25 - 4 crappy and 3 indifferent days. I still have this cold , it is one of them that gets stuck in your throat overnight, so you cough up crap in the morning for a hour or so , then feel a bit better through the day then your nose starts to bung up at night again. It seems to cause me to wake in the night as stuff runs down my throat and my brain thinks I am choking, so it has effected my sleep quite badly.

Sounds abit like sinusitis, it can be a bugger. Waking up with a headache, facial pain and that post nasal drip that gives u the urge to cough. Im wondering if your immune system is now working and its going after other infection u have that it hasnt gone after since your immune system has been shut down??

Like dr lerner has mentioned that these bacterial co-infections can slow down or maybe mask the effects the antivirals are having???

I mention this as it seems to be an issue i am having at the moment. Im getting improvement with antibiotics but not sustained. Since antivirals i dont get the lymph glands playing up and being painful that one can get with viral infections.

We need one pill that kills all the dam viral and bacterial infections.

thanks for your updates,
cheers!!!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I hate those colds Clive. Mine tend to turn into long bouts of sinus infections. I use a steam inhaler from Boots if my nose is bunged up with a cold (put boiling water and tea tree oil in it). Once it turns into a sinus infection that I need antibiotics. If my nose gets unbunged but is infected I can wash it out with a Grossan irrigator.

Sorry to hear how bad the cold is. Pretty miserable and esp, the lack of sleep.
 

clive powney

Senior Member
Messages
206
Location
coventry
Week 26 - 2 crappy and 5 indifferent days. Still got this cold so I think I need to see the quack as it would be a good idea to see if I have an infection.
 

Yin

Messages
7
Clive and All,
I really need your help. I do not know what to do now.
I have experimented with Famvir the past several months and even on taking the 2nd pill I began to have swollen throat, swollen larynx, laryngitis, swollen lymph nodes, cough with lots of clear phlegm. When I stayed on Famvir a week UI felt a growing pressure and tension inside my entire body, but especially in my head and jaw and face, and this pressure made me emotional. I also noticed about 10 hrs after each pill, as its effect began to wear off, the cough would become constant for 2 hrs, getting out all the phlegm that was produced during the 10 hrs the Famvir was in my system. I had first read that anti-virals suppress some viruses, but re-activate others, so I thought at first the Famvir was reactivating old viruses in my throat and respiratory system. I experimented with going off the Famvir, and each time the strong internal pressure went away the next day and the "cold" Famvir had seemed tot "re-activate" went away in 2 weeks.
Researching more, I saw on Drugs.com and 2 other websites that edema of the throat and face, pharyngitis, and upper respiratory infections are listed as side effects of Famvir. I now wonder if it actually is a Famvir reaction or allergy that is causing edema in the throat and respiratory system and that is causing the cough and runny nose, and also causing edema in other parts of the body and head, and that is causing the internal pressure and crying. Has anyone been told by their doctor that these sorts of respiratory and emotional side effects are side effects and reasons to go off Famvir?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Clive and All,
I really need your help. I do not know what to do now.
I have experimented with Famvir the past several months and even on taking the 2nd pill I began to have swollen throat, swollen larynx, laryngitis, swollen lymph nodes, cough with lots of clear phlegm. When I stayed on Famvir a week UI felt a growing pressure and tension inside my entire body, but especially in my head and jaw and face, and this pressure made me emotional. I also noticed about 10 hrs after each pill, as its effect began to wear off, the cough would become constant for 2 hrs, getting out all the phlegm that was produced during the 10 hrs the Famvir was in my system. I had first read that anti-virals suppress some viruses, but re-activate others, so I thought at first the Famvir was reactivating old viruses in my throat and respiratory system. I experimented with going off the Famvir, and each time the strong internal pressure went away the next day and the "cold" Famvir had seemed tot "re-activate" went away in 2 weeks.
Researching more, I saw on Drugs.com and 2 other websites that edema of the throat and face, pharyngitis, and upper respiratory infections are listed as side effects of Famvir. I now wonder if it actually is a Famvir reaction or allergy that is causing edema in the throat and respiratory system and that is causing the cough and runny nose, and also causing edema in other parts of the body and head, and that is causing the internal pressure and crying. Has anyone been told by their doctor that these sorts of respiratory and emotional side effects are side effects and reasons to go off Famvir?

could try a lower dose or better yet a different brand incase it is an allergic reaction to a filler in the famvir. It is normal to feel worse initially when on antivirals, as it lowers the viral load sometimes the supressed immune system kicks in and starts clearing other infections. Not uncommon to have painful glands in the throat and probably other places from herpes viruses. The emotional side of things can be from the cytokines released from the immune system too. SOme people just try to ride it out or use other meds/supps to help with these side effects, eg 5htp if it seems to lower ones mood??
 

clive powney

Senior Member
Messages
206
Location
coventry
Clive and All,
I really need your help. I do not know what to do now.
I have experimented with Famvir the past several months and even on taking the 2nd pill I began to have swollen throat, swollen larynx, laryngitis, swollen lymph nodes, cough with lots of clear phlegm. When I stayed on Famvir a week UI felt a growing pressure and tension inside my entire body, but especially in my head and jaw and face, and this pressure made me emotional. I also noticed about 10 hrs after each pill, as its effect began to wear off, the cough would become constant for 2 hrs, getting out all the phlegm that was produced during the 10 hrs the Famvir was in my system. I had first read that anti-virals suppress some viruses, but re-activate others, so I thought at first the Famvir was reactivating old viruses in my throat and respiratory system. I experimented with going off the Famvir, and each time the strong internal pressure went away the next day and the "cold" Famvir had seemed tot "re-activate" went away in 2 weeks.
Researching more, I saw on Drugs.com and 2 other websites that edema of the throat and face, pharyngitis, and upper respiratory infections are listed as side effects of Famvir. I now wonder if it actually is a Famvir reaction or allergy that is causing edema in the throat and respiratory system and that is causing the cough and runny nose, and also causing edema in other parts of the body and head, and that is causing the internal pressure and crying. Has anyone been told by their doctor that these sorts of respiratory and emotional side effects are side effects and reasons to go off Famvir?
I would seek the help of a doctor.