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my famvir trial

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by clive powney, Nov 5, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    makes it hard to know as cfs is generally an up and down illness as it is. I suppose a few things to look for is are your downs not as low as previously and are the amount of good days u r having are more then previously?? Other then those all i can suggest is get to the 6 month mark and reassess to see if u think its worth it. Its really the only way we have unless we can get tested for every dam thing. As dr lerner has found out, partially responders generally have bacterial co-infections going on as well. This is why i also mention the doxycycline too.
     
  2. clive powney

    clive powney Senior Member

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    week 14 update :
    Went back to the docs about my ear and continuing slight cold. Doc couldn't see any problem with my ear or cold and gave me a beconase nasal spray. Overall the last week has been pretty poor. After heapsreal's post I have started to note down the days when I feel "better" , "neither here nor there" or "crap". I used to take my score from 1 to 10 every day for a year or so but gave that up as things only ever went gradually downhill. This new way of looking at my "progress" is a lot more simple and I should be able to plot these on a graph.
    Week 13 would have been 6 better days and 1 crap day
    week 14 5 crap days and 2 neither here nor there. I am away next week for a few days so I may miss mt weekly update.
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    anymore updates clive? need more better days and less of those crappy ones.

    hope your going well.
     
  4. Pam123

    Pam123

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    Clive:

    I am new to this forum and I have been very interested in reading your weekly updates.

    I have a 24 year old daugther that was diagnosed in November 2012 (symptoms started in July 2011 after a viral illness and she was diagnosed with POTS in November 2011). She is seeing Dr. Kogelnik in California and she started taking Famvir 2 months ago. She has not noticed any improvement yet but we are sure hoping to within the next few months.

    I look foward to reading your next update!!


    Pam
     
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  5. Hip

    Hip Senior Member

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    Hi clive

    I can relate to the "inability to cope with even slightly stressful situations". I had severe anxiety symptoms, and in my case, I believe the inability to cope with any stress was linked to this anxiety. Fortunately, I found a number of effective treatments for my anxiety (see here), and these treatments also improved my ability to cope with mild stress and mild conflict a little better.
     
  6. clive powney

    clive powney Senior Member

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    Pam , sorry to hear about your daughter. One of my biggest fears is one of my children come down with this and unfortunately I do feel there is a hereditary link. Thanks also for taking an interest in my experiences, I hope that others learn from this as I have done from others.
    Clive
     
  7. clive powney

    clive powney Senior Member

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    Hip,

    Thanks for your input and interest. How quickly did the supplements seem to take effect?

    Clive
     
  8. clive powney

    clive powney Senior Member

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    Sorry that I didnt post last week. It was my 50th birthday and my wife and I spent a few days away (first time for 20 years without children in tow :hug:. )

    Week 15 - 2 crap , 3 indifferent and 2 "better" days, Not much more to say as this was generaly a normal ME week.
    Week 16 - 7 "better " days. Not sure if this is due to the fact that I was away from my normal day to day stressors etc.
    I normally do feel "better" when I am on holiday and one of my theories is that a lot of energy is used coping with day to day life in a normal situation and holidays are by design a release from that. Also I think a lot of energy is used to keep a human warm and if I am in a warmer climate then this energy can be used elsewhere - this theory does fall flat though with others as they feel worse in the warmth, we are all different though.
    On the on-going treatment front I am going to try xifaxan soon for 2 weeks. I bought some from magicpharma before I went away. The reason for this is that although the kefir and colostrum have bought my bowel movements under control and infact are in the best order that I can ever remember ( IBS for many years) I still suffer from bloating and regular EXTREME wind. This has been the case for many years and has been so bad sometimes that I really should move into the shed. I am waiting for a delivery of kefir and colostrum before I do this as I want to take this inbetween doses so that I hopefully replace bad bacteria with good ones.
    Thanks for the interest shown in my blog and good luck

    Clive
     
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  9. maryb

    maryb iherb code TAK122

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    Clive I too feel much better for having some sunshine whether at home or away on holiday. I also feel better just being away from my house - hence my intention to move. Dr My-hill says if you feel better away from your home environment its probably the house?? Difficult one that.But I do have MCS and massive aversion to mould, which I don't think you have.

    Glad you felt better anyway - I did too this Jan for about 4 days after a month away - so not a long lasting improvement for me!!

    Just a note on the xifaxan - I was told to take VSL - so any probiotic I suppose after a course of this, it will wipe anything out.

    Great that you're posting on this really useful thanks.
     
    merylg likes this.
  10. Hip

    Hip Senior Member

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    The supplements kick in within 1 to 3 hours of taking them, and then slowly wear off by the next day. If you have very high anxiety, taking some supplements twice daily may be useful.

    I have found there is also a cumulative effect, so that after a few months taking these supplements daily, your overall baseline anxiety tends to reduce quite significantly.
     
  11. clive powney

    clive powney Senior Member

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    week 17 - 1 better, 4 indifferent, and 2 crap days. So as usual , back to normal life and back no "normal" ME. I did have a bit of a stomach bug for a couple of days so that would skew the results a bit but not that it really made any difference. I did start the xifaxan yesterday though and am feeling a bit more nauseous than normal. Just hope this treatment has an impact on my wife's sense of smell before I end up getting divorced! I would wonder what a solicitor would put on divorce papers if the cause was my backside?
     
  12. clive powney

    clive powney Senior Member

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    week 18 - 3 better ,2 indifferent and 2 crap days. Nausea seems to have abated from the xifaxan and there seems to be a better feeling about my stomach and bowel movements seem encouraging.Seem to have picked up a slight cold AGAIN. Not much else to report really.
     
    heapsreal likes this.
  13. clive powney

    clive powney Senior Member

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    week 19 - 1 better, 5 indifferent and 1 crap days. Just a continuation of my normal ME state. I am getting to the point of saying that famvir has had no impact on me at all. I have around 5 week of tablets left to take and at the moment my trial will end when they finish.
     
  14. lnester7

    lnester7 Seven

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    Clive What I understand is that this is just to stop the replication so you are not going to see that much improvement in symptoms (for a long time 6month to one year) but your titters when tested is what is going to say if it is working, Also the other stuff that is working in your immune system should be fighting the existing viral load so is a combo per say. In my case I am on immune modulator and Antiviral. I am no doctor and suffer from brain fog but that is how it was explained to me. Antiviral is just to help the immune system fight because is too weak to clear infections by itself. Maybe somebody with experience on antivirals can clarify me.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i believe antivirals can mixed up with what they do. firstly what they do is stop viruses replicating/breeding for another word?? reactivate is when the viruses wakes up from dormant state and starts sucking the life out of u, they may try to replicate but hopefully the antivirals are like antiviral condoms and stopping all those little buggers having babies and more viruses, this is what antivirals are for, chemical castration of viruses. but until the virus burnsout and dies, it can stil go dormant or replicate living off its host, US. So long trials of antivirals are needed to irradicate them or lower them enough that our immune system can keep them supressed.

    Treating herpes virus is a big part of the problem for many of us but still need to chase after other things like othe bacterial co-infection which are found in thos not responding to ,antivirals. I also think hormones being optimised is also important if one can tolerate it. Also ways of increasing immune function like immunovir, gcmaf, ampligen etc.

    cheers!!
    good luck.
     
    lnester7 likes this.
  16. clive powney

    clive powney Senior Member

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    Thanks for your input heaps and inester7. What I am struggling with is what is the lifespan/lifesycle of a herpes virus? If I stop them from replicating then those that cannot replicate must either die off or go to sleep in some sort of hibernating state. If they die off or hibernate and cause no disease (and their lifespan is < 6 months) then surely I should be seeing some improvement. If they go into hibernation and I dont see any improvement , then it doesnt matter how long I take anti virals for, I will never see an improvement - or am I being very simplistic?
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    im not sure if they do hibernate in us but i just think it takes time for them to die out, they are like cockroaches. unfortunately i think they still keep active(varying levels) but just cant breed when on antivirals, if that makes sense and it takes time for this viral load to drop enough to notice. I think even if the virus was to go dormant then we could also be in a post viral state for 6 months too just like a non cfsers who gets mono would.

    the other thing is that dr lerner finds that those who are positive to herpes viruses and dont respond to antivirals he finds a high percentage have bacterial co-infections going on. Some of us are in a specific subset and others are possibly in more then one subset.

    I think if u feel like u have given antivirals a good run but not getting any benefit then its an expensive treatment to keep going for no results. I know its hard to get testing in the uk but i would be trying to get more pathogen tests done and maybe when u have established whats going on then maybe add antivirals to the treatments for other pathogens?? Maybe look into equilibrant for possible enterovirus infection (at a guess) and general treatments for your immune system like immunovir?? Also doxycycline is a cheap therapeutic treatment trial for many bacterial infections that one could try.

    The other thing to consider is adrenal fatigue/dysfunction which i think many of us have but its secondary to the infection/immune dysfunction.

    Unfortunately its like a big jigsaw puzzle putting the right pieces in the right combination and there doesnt seem to be any fullproof testing to sort it out. I hate saying it but it is trial and error and educated guessing. I think i have been lucky in a way to stumble across the right treatment, although i went through alot of trial and error.

    Im sorry your not improving and when things we put alot of hope in dont seem to work, it really takes the wind out of your sail. If u can afford to keep going on famvir for 6 months i would try and hang on till then. It took me 6 months before i could say it was helping. prior to starting famvir i seemed to crash every month or so just like a virus was reactivating but when i started famvir i didnt notice any improvement in symptoms other then i wasnt crashing and doing the 2 steps forward and 2 steps back thing, instead i was stationary( not so up and down) for awhile until at about 6 months i realised i hadnt crashed for the last 6 months which encouraged me to keep going. Then after that, fatigue symptoms etc etc started to improve. SO i think famvir halted the viruses and i was just in that 'post viral state' for 6 months until my body was able to start to try and recover. its so dam hard to judge improvement with this illness, sometimes i second guess myself im actually an 8 out of 10 when im having a bad day but i have to turn around and look back where i had been to realise.

    Good luck,
    I hope you work out the right choices,
    cheers!!!
     
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  18. lnester7

    lnester7 Seven

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    The other thing to consider is if there are other things going on. I for Example have coasaxie so I had to take equillibrant also, I have sleep issues and only the sleep meds made me feel better in that aspect, I have OI so I had to treat that to see relief of that symptom. When I went to the Dr and she asked me to list the first 3 major complains, I thought she was crazy because I had up to 100 different things going on so I thought we were never going to finish, But that approach really worked as I went for the major things and treated those, then the other symptoms were disappearing and now Even though I am sick, I am veryyyy active.

    This was my order:
    Thyroid (Take cytomel and synthroid)
    Sleep: I do not reach stage 4 sleep (had sleep study). Take trazadone and temazepan.
    Active viral load and Immune dysfunction. Take famvir, immunovir and equillibrant
    Pain (this still working on). LDN
    OI and PEM (at this point the fatigue that was sooooo intense let up by itself). On florinef and Midodrine.
     
  19. clive powney

    clive powney Senior Member

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    inester7 - it is great that you are doing a lot better and i see on the forum that others are too. the one thing that everyone forgets (and it is not their fault) is that I live in the UK .... Unless I do CBT or GET then I have no other channels to go down other than to fork out at least £5000 and try Dr DeMelier in Belgium or more if I want to travel to the USA. Even then if I were prescribed something (in the main) I would have difficulty getting hold of it from here.
     
  20. clive powney

    clive powney Senior Member

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    Heaps, I have tried pretty much all of the things you have mentioned above without any success. I have had this for around 11 years now. I was diagnosed +ve for lyme around 6 years ago by an LLMD at the Breakspear hospital in UK (testing done at Igenex in USA and Brehmen Germany) and was on different courses of anti-biotics for well over 2 years - doxycycline,claryromycin,amoxycillin, anti-fungals, riamphin, ceforoxime, anti malarial tablets and others I cant remember - no luck. I also had over 6 months of treatment for adrenal malfunction , based on 24 hr saliver and urine testing at the climer institute in USA - no luck. I have had ATP profile testing done and was shown to have very poor ATP function (Sarah M's clinic in UK) - did a 6 month stint of a variety of supplements and self injected vitamin b and magnesium twice a day for that period - no luck. i did over 6 months of equilibrant at 6 tablets a day - no improvement. I did the lightning process and also had 6 sessions of relaxation hypnotherapy - no good. I have also done CBT and GET and ended up falling out with the instructors, I have seen a psychiatrist who said I was in perfect mental health. I have tried a multitude of probiotics , and diets, I have tried LDN for 6 months - no effect. I have tried worming tablets and other strange things.One thing that has pretty much sorted out my IBS has been the kefir and colostrum mixture I have been drinking twice a day for about 9 months now - so I would definitely recommend this. I was one of the very first 12 people in the UK to get tested for XMRV. These are obviously not in the order listed (and there are probably others I cant remember). Originally I was treated on private health care until they stopped paying as they said it was a chronic long term condition. I have paid probably around 10k out of my own pocket (+10K on private health care) as well and since losing my job (a well paid senior IT manager) have had to choose my pathways with a lot more monetary caution. Sorry for the rant but I expect many others on here are feeling the same as me and it is good to get it off my chest.
     
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