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my famvir trial

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

  1. clive powney

    clive powney Senior Member

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    Week 27 - again 2 crappy days and 5 indifferent. Went to the doctors about this continuous cold and he said that I didnt have an infection and it was a virus. I would need to take a nasal spray for the conjestion and go back in 3 weeks if things were not resolved. To be fair my youngest son seems to have the same problem (in fact he has had it a week longer than me) and a different doctor has said the same about him. I am now toying with the idea of making an appointment with Dr Gordon Skinner. I looked at his website and my symptoms ,thyroid tests and basal temperature from years ago seem to match what he is saying is hypothyroid. I looked at any testimonials on him and although he has been investigated by the GMC (NHS) on 2 occasions he was allowed to continue his unauthodox treatments. A family friend who was diagnosed with MS then Lupus then M.E. has been to see him and seems to be recovering. I also looked on line at any testimonials he might have and was shocked by the testimonials from patients who supported him through his GMC hearings. There was a dossier of over 2000 patient testimonials. I thought I would read them all (some chance) , but after the first 5 or so , was again shocked at the words of the majority, if not all, like 'returned to full health even though my GP did not agree with my treatment for hypothyroid', 'has given me my life back' etc. I was also given his book by our friend and during the opening few pages he happened to mention herpes viruses , particularly EBV and varicella zoster (chickenpox) and in his opinion these are a major factor to thyroid damage especially when contracted in adulthood. All of my problems started when I had a bout of chicken pox and although I was ok for a few years after , when I then contracted shingles and was going through a very stressful time at work, I went downhill to where I am now.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    to be honest clive, the doc cant really tell if your current illness is bacterial or viral(unless he tests for it) and i reckon a trial of broad spectrum antibiotics(abx) is worth a shot if u can get some. We are immune compromised, so prone to these other bacterial infections that are worth trying to treat with abx. Hopefully can see some improvement then from the av's

    I think in us too all our hormones are generally low which can affect our metabolism and body temps. My body temps are starting to return to normal since i have been slowly fixing hormones, especially the latest with testosterone, thats with no thyroid. I suppose im saying this as its not just thyroid that can be causing low body temps or indirectly other hormones could also be causing low thyroid function like in adrenal fatigue etc. Its definately something to try and look further into, but look further then just thyroid for low temps.

    good luck mate,
    cheers!!!
     
  3. clive powney

    clive powney Senior Member

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    Thanks heaps. I have had a 24hr cortisol saliva test done and although my levels track the curve of a normal cortisol production, the are at every stage lower than they should be, my DHEA is stagnant and very low, I tried suplementation of both cortisol and DHEA and no response. Apparently he also treats hypoadrenalism.
     
  4. Yin

    Yin

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    I have asked my internist who gave the Famvir scrip. He has no idea and just said maybe i caught a cold.. I ask here because I thought some of you may be working with docs who are more experienced with Famvir than my Internist. Are the "cold" symptoms you get when on Famvir typical cold symptoms? Mine are not. I get the throat and lymph node swelling and the bad cough of phlegm from my throat, but no runny nose or watery eyes or other cold symptoms.
     
  5. Ecoclimber

    Ecoclimber Senior Member

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    If you still have the sore throat and lymph node swelling, you might taper off the Famvir for awhile and take Tamiflu in case it is virus, if bacteria, then the broad range abx they can use, but before you do that have have the internists put you on a 7 day pact of prednisone 5mg to determine if your symptoms will diminish.

    Eco
     
  6. anniekim

    anniekim Senior Member

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    Hi Clive,

    I saw Dr Skinner about 14 years ago in my first year of m.e. he diagnosed under active thyroid even though my results were still in the normal range, albeit at the lower end of normal. I took thyroxine and improved a lot going from housebound to moderate. Initially I thought I didn't have m.e but just missed under active thyroid. I stayed moderate for four years and then descended into severe m,e over two years where I have remained for the last seven years.

    I've also been on cortisol for seven years. I think my m.e probably did make my thyroid under active but treating it only partially helped and the effects didn't last. Some people undoubtedly have been diagnosed with m.e when they are a missed case of under active thyroid but not all.

    dr Skinner is a lovely man but he does seem to believe all cases of m.e are missed thyroid cases which i don't think is the case. If you suspect thyroid problems he is worth seeing, though
     
    justy likes this.
  7. Rrrr

    Rrrr Senior Member

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    clive powney, i am just starting to read your thread because i am just about to start famvir myself in 3 wks time.

    i'm interested in what you wrote about your balance issues because i have them too (i.e. vestibular issues). and, well, see below for what i just discussed with my doctor:


    1) HERPES SIMPLEX VIRUS CAUSES VESTIBULAR NEURITIS
    - Two days ago I was shocked to learn that 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

    and at the same time, see this:

    2) FIBRO RESEARCHERS FINDING THAT HSV MAY CAUSE FIBRO AND CFS

    http://www.prohealth.com/library/showarticle.cfm?libid=17194
    http://research.ua.edu/2012/08/going-viral-surgeon-professor-team-in-new-approach-to-pain-treatment/


    so that means taking an antiviral could be a "two-fer" killing to birds with one stone. see this:

    3) TWO-FER: ANTIVIRAL PROTOCOL TO ADDRESS BOTH VESTIBULAR AND ME/CFS?
    - See the enclosed case study of 1 patient who took HSV for her oral herpes (HSV) outbreaks and, lo and behold, her recurrences of vestibular neuritis resolved. http://www.ncbi.nlm.nih.gov/pubmed/22154065
    - The researchers in #2 above think this exact same virus (HSV) is what causes Fibro and ME/CFS.
    - In other words, an antiviral protocol to address HSV could help both vestibular issues and ME/CFS.
    - And if not HSV, it could be another virus that causes both the ME/CFS and the vestibular issues. E.g. I recently tested high for Epstein Barr Virus and HHV6, which is why I'm going to take Famvir.
    _____

    so, clive, have you noticed if the famvir has helped yr balance issues????????

    rrrr
     
  8. clive powney

    clive powney Senior Member

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    rrrr, I am not a particularly good place at the moment and have slid away over the last 4 weeks from the best 3 weeks for a couple of years just prior. I have had a cold for all the 4 weeks and it will not shift and is maybe contributing, so until that goes I cant compare properly. My worst balance problems (i.e sitting on the bed in the morning with the room moving up and around , or feeling sick just turning over in bed) had mostly gone over 2 or 3 years ago. But I still get the feeling of walking accross a pebbly beach a lot of the time , it's as though my brain is not second guessing where the floor is and is trying to make subtle adjustments as I walk. This has not really changed (but did for the 3 good weeks I mentioned above) Hope this makes sense?
     
  9. clive powney

    clive powney Senior Member

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    Thanks for this anniekim. It sounds like he is well worth a punt as I and many here would take a 2 to 4 point increase in activity even for only 4 years. Did you not go back to him at all as you feel more ill. Did he try anything?
     
  10. Rrrr

    Rrrr Senior Member

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    thanks for this info. sounds to me like we have a similar vestibular (balance) problem, but mine is much worse.

    do you know why you are doing so much worse? is it the cold?

    best,
    rrrr
     
  11. clive powney

    clive powney Senior Member

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    Things did go downhill about 4 days before the cold symptoms flared, I had a lot of nausea and generaly felt unwell. It could have been part of the same thing especially as the cold seems to have hung around for such a long time. I think it is on the way out this morning - fingers crossed it will be gone in a couple more days.
    Regarding my balance problems, when I first had it it was diagnosed as viral labrynthitis. I woke up one morning and went to go to the bathroom and fell over and I couldn't get up properly. I went back to bed and stayed there for over a week, only able to stare at the ceiling. Things never fully recovered. I was sent for vestibular rehabilitation but it never really resolved. I then had bouts of quite bad balance problems for about 6 years on and off but now apart from the odd feeling when walking it has mostly resolved.
     
  12. Rrrr

    Rrrr Senior Member

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    well this vestibular problem sounds VERY similar to me! my "quite bad" balance problems have been going on for 4.5 years. yours went on for 6 years!? but then mostly resolved? HOW did they resolve? thanks!
     
  13. Rrrr

    Rrrr Senior Member

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    again, i urge you to read these papers that i posted earlier. (i'll repost them below.) they seem to be stating that if we do antivirals, it could clear up our vestibular issues as well as our ME/CFS issues. have you found the famvir has helped resolve what final bits of the balance problems you still have? -- rrrr


    1) HERPES SIMPLEX VIRUS CAUSES VESTIBULAR NEURITIS
    - Two days ago I was shocked to learn that 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

    and at the same time, see this:

    2) FIBRO RESEARCHERS FINDING THAT HSV MAY CAUSE FIBRO AND CFS

    http://www.prohealth.com/library/showarticle.cfm?libid=17194
    http://research.ua.edu/2012/08/going-viral-surgeon-professor-team-in-new-approach-to-pain-treatment/


    so that means taking an antiviral could be a "two-fer" killing two birds with one stone. see this:

    3) TWO-FER: ANTIVIRAL PROTOCOL TO ADDRESS BOTH VESTIBULAR AND ME/CFS?
    - See the enclosed case study of 1 patient who took antivirals for her oral herpes (HSV) outbreaks and, lo and behold, her recurrences of vestibular neuritis resolved. http://www.ncbi.nlm.nih.gov/pubmed/22154065
    - The researchers in #2 above think this exact same virus (HSV) is what causes Fibro and ME/CFS.
    - In other words, an antiviral protocol to address HSV could help both vestibular issues and ME/CFS.
    - And if not HSV, it could be another virus that causes both the ME/CFS and the vestibular issues. E.g. I recently tested high for Epstein Barr Virus and HHV6, which is why I'm going to take Famvir.
     
  14. maryb

    maryb iherb code TAK122

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    clive powney
    Your experiences with balance issues mirrors mine, when it started unfortunately mine included being sick every time I tried to move my head I was admitted to hospital 3 times with dehydration within 3 months, the nice doc :rolleyes: on the 3rd occasion said she thought I could drink and was choosing not to, she wasn'nt going to give me IV, implying that it was attention seeking............
    I lost 2 stone and on getting down to a private clinic on pillows in the back of the car was found to have sky high CMV and EBV titres. Our experiences with the NHS eh.
    Mine still comes and goes but like you I feel odd sometimes when walking - I feel better leaning on something or someone to help sort of ground me.
     
  15. Rrrr

    Rrrr Senior Member

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    i am thinking that all of us with vestibular issues have a virus causing both it and ME/CFS.
     
  16. maryb

    maryb iherb code TAK122

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    Rrrr
    I agree totally.
     
  17. clive powney

    clive powney Senior Member

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    I honestly dont know. Like many of the symptoms in th F"£$king horrible disease they change over time. My symptom list would be very different than when I first had this.
     
  18. clive powney

    clive powney Senior Member

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    Looking back my balance issues happened about a year or so after I had adult chicken pox. My mum said that I had had chicken pox as a child (the NHS say you cant get it twice, but others on here (heapreal for example) have too). I was then quite well until I got shingles, then this whole 11 year long of downhill health sparked off. I dont believe in co-incidences. I feel that herpes zoster has a lot to do with this, maybe not on it's own but it is implicated in this somewhere. The other herpes viruses seem to keep reappearing in science papers and that is why I have been trying the famvir.
     
  19. anniekim

    anniekim Senior Member

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    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
     
  20. Rrrr

    Rrrr Senior Member

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    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?
     

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