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my famvir trial

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
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.
Clive (cool name btw), it doesn' take fancy doctoring to solve thyroid problems...you just get a full thyroid panel (TSH, free T4, Free T3. reverse T3, and the two thyroid antibody tests) and you use this info from Life Extension to interpret it: http://www.lef.org/protocols/appendix/blood_testing_02.htm

This article cites studies which show that if your TSH >= 2.0, you can lower your cholesterol by taking thyroid hormone (which proves that TSH should be < 2.0, a value RIGHT IN THE MIDDLE OF THE SO-CALLED NORMAL RANGE). There is no scientific basis for the reference ra nge of thyroid hormones and that is why LOTS of peopel have thyroid trouble and remain undiagnosed. So...if your thyroid is normal but just not getting the input it needs, you can try a product like this that supplies everything the thyroid needs to make its hormones: http://www.iherb.com/Thorne-Research-Thyrocsin-Thyroid-Cofactors-60-Veggie-Caps/21588

If you have allergies or possibly due to infections you may use up zinc faster than normal (as I do) and supplementing zinc (beyond what is in this supplement) may help (but you know if you supplement zinc you must also supplement copper). Also if you eat low protein or need to make skin to heal (ths need more protein) you may need extra tyrosine, the amino acid that thyroxin is made out of. I take 1 g tyrosine/day also in addition to the supplement above. I also want to say that a good multi should contain everything that is in the product above so check your multi and if it does not then I'd find a new multi.

I get TSH blood tests online either through www.lef.org or www.directlabs.com. So...you need not be dependent on a great doctor unless you atill have problems after the above (such as maybe nodules on your thyroid or if this doc can actually heal you from any residual virus or whatever).

Also I want to point out one possible problem regarding thyroid...most commercial breads contain bromide which is a halogen and can replace iodine, which your thyroid needs. I have not investigated yet how much of an effect that has. I was just talking to a woman today whose doctor told her not to eat any bread because of her thyroid and we were just speculating that homemade bread w/o bromide might be just fine.
 

clive powney

Senior Member
Messages
206
Location
coventry
week 29 - 3 crappy and 4 indifferemnt days. Still got my 'cold'. Went back to the docs again and he said that it was definately sinusitis and it could last for a couple of months. I was to carry on taking the becanese nasal spray. I am Pi$$ed off with it as I spend the first hour of each day loosening phlegm from my throat. My son has the same, maybe it is hay fever, but I have never had this before. This is now the worst I have been for at least 3 years, strage after 5 pretty good weeks. It may be the sinusitis but I will only know when it goes!!!£$%
On the subject of Dr Skinner (my appt is 6th June).
Has anyone seen the testimonials from 2000 of his patients when he was up before the GMC when they were trying to get him struck off?
see these http://www.yldonline.com/tpadocs/Skinner/
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
i think while u have cfs, then sinusitis wont just go away as our immune system is up the creek. sinusitis can really floor us, wake up with a cracker of a headache and just an intense fatigue from it. Antibiotics are the only things that have really helped me but still hasnt cured sinusitis, yet. Im now doing a low dose augmentin for 3 months. I feel good on antibitoics but when i stop the sinusitis comes back.its a bugger.

cheers!!!
 

clive powney

Senior Member
Messages
206
Location
coventry
week 30 - 7 indifferent days. STILL got this godamn cold! Not much else to report really. I will probably be dropping the antivirals at the end of the week so the trial will be coming to an end. I will see what Dr Skinner has to say.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
i think while u have cfs, then sinusitis wont just go away as our immune system is up the creek. sinusitis can really floor us, wake up with a cracker of a headache and just an intense fatigue from it. Antibiotics are the only things that have really helped me but still hasnt cured sinusitis, yet. Im now doing a low dose augmentin for 3 months. I feel good on antibitoics but when i stop the sinusitis comes back.its a bugger.

cheers!!!
I just don't understand this. We do things differently and I am not sure what exactly the difference is. I get HORRIFIC sinus headaches and my eyes swell up so that I cannot see and my throat hurts like someone punched me inside the mouth and my head crabs up so much I cannot think. But antibiotic does not fix it (well I never tried because it just doesn't compute for me...I am getting a reaction to pollen and an antibiotic can't fix that!) but if I take 9g omega-3 and avoid non o-3 fat (eat salmon for lunch for instance) and take 50-75mg zinc picolinate ad extra protein (more than I usually eat - not a lot), it makes a HUGE difference within 24 hours - pain gone, and much of the head crabbing, nose runing, eye swelling etc. I am not very good at avoiding non o-3 fat but I think as I get better so will my sinusses. If I did not do the above I would have sinus pain forever but whether it turned into an infection or not, antibiotic wouldn't fix it. 20 spirulina pills / day is a big help alternately. I prefer the o-3 because I know it's good for my heart too so I guess I'm getting a two-fer with it. I take 1g E with all that fat to make sure it does not turn rancid.

If you tell me your nose does not run at about 1 drip every 10 seconds then maybe that is why you get infections with your pain...I might just be drooling out all the germs?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I just don't understand this. We do things differently and I am not sure what exactly the difference is. I get HORRIFIC sinus headaches and my eyes swell up so that I cannot see and my throat hurts like someone punched me inside the mouth and my head crabs up so much I cannot think. But antibiotic does not fix it (well I never tried because it just doesn't compute for me...I am getting a reaction to pollen and an antibiotic can't fix that!) but if I take 9g omega-3 and avoid non o-3 fat (eat salmon for lunch for instance) and take 50-75mg zinc picolinate ad extra protein (more than I usually eat - not a lot), it makes a HUGE difference within 24 hours - pain gone, and much of the head crabbing, nose runing, eye swelling etc. I am not very good at avoiding non o-3 fat but I think as I get better so will my sinusses. If I did not do the above I would have sinus pain forever but whether it turned into an infection or not, antibiotic wouldn't fix it. 20 spirulina pills / day is a big help alternately. I prefer the o-3 because I know it's good for my heart too so I guess I'm getting a two-fer with it. I take 1g E with all that fat to make sure it does not turn rancid.

If you tell me your nose does not run at about 1 drip every 10 seconds then maybe that is why you get infections with your pain...I might just be drooling out all the germs?

Im just getting at that if we have viruses reactivating in us than we are probably immune suppressed, so more prone to other infections. Sinusitis can be caused by different things, yours seems to be allergy related. my sinus issues are bacterial related. My last blood test showed that i had moderate neutropenia and neutrophils are needed to fight bacterial infections. It could be just a cfs thing for low neutrophils but it may have been the valcyte causing neutropenia as my sinus problems have been mainly since i have been on valcyte. my doc has told me to increase my zinc intake to help with neutropenia. Im off valcyte now and get more blood work done in 3 months, so we will see how the neutropenia goes??

cheers!!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Antibiotics do "fix" my sinuses but it is only a temporary fix. The sinus infections come back. The sinus infections start as a blocked nose, painful sinus area and then I start blowing out green stuff. When I am in bed it's hard to sleep because of the constant run down the back of my throat. This makes me sick in the stomach as well. I need to sleep on pillows. If I don't take AB's it gets worse and worse. I've tried the pots, tea tree, olive, sea salt, antifungals and many different washes.

A CAT scan showed that the infection was eating through the sinus area. I bought a Grossan Irrigator and use that to try and stop the infections. It does work most of the time but I'm getting frequent colds and when my nose gets bunged up by these and then the infections take hold. If I use the Grossan Irrigator when I have a cold it makes it worse.

This is different to the sinus irritation and swelling/pain/drip that I get from an allergy attack. Another way I can tell the difference is that food starts tasting awful if it is an infection.

Maybe it would be the green or yellow discharge that would help people determine if it was an infection?
 

Rrrr

Senior Member
Messages
1,591
week 30 - 7 indifferent days. STILL got this godamn cold! Not much else to report really. I will probably be dropping the antivirals at the end of the week so the trial will be coming to an end. I will see what Dr Skinner has to say.

clive, let us know what you have decided. i'm about to start famvir next wk.
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
Ok, Thanks. Was just wondering if you had done it and if you found it to be helpful in building up mitochondria as she claims in her theory.
 

clive powney

Senior Member
Messages
206
Location
coventry
Hiya all. This will be my last post on this as I have now finished my trial. Overall there has been no improvement at all. Things have fluctuated just as they normally have and unfortunately the only winners were magicpharma. For those who have found famvir useful I am very happy for, but I now need to focus on my next quest with Dr Skinner and my thyroid
Good luck to everyone
Clive
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hope that Dr Skinner is able to help Clive, Really sorry that Famvir wasn't any good for you.

Would you be happy to report back on how you get on if you have enough time and energy? Quite understand if not.
 

Rrrr

Senior Member
Messages
1,591
I will do my best to keep people posted

clive, thank you so much for this thread, which was very very helpful. so even tho you did not get improvements from famvir, you were still a trailblazer and role model for me and others.

i have tried so many darned things in the past 2 decades. if i had a dollar for every treatment protocol i've done that did not help me, i'd be a millionaire!

clive, say did you start the famvir at full dose, or slowly build up?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
a failed treatment isnt a fail but a tick in the box of something tried and move on. We have all moved on from certain treatments. But all ways consider revisiting some treatments as maybe the non response could be because of another issue. Treatment trials would be so much easier if we had access to better testing and interpretations of these tests.

cheers!!
 

Rrrr

Senior Member
Messages
1,591
fyi...

Announcement: Clinical Trial for Fibromyalgia and ME/CFS Patients
June 2013

Please see below 2 articles that discuss this protocol (or just google Pridgen + Fibromyalgia)
http://www.prohealth.com/library/showarticle.cfm?libid=17194
http://www.tuscaloosanews.com/article/20120909/NEWS/120909792

This Phase II clinical trial known by the acronym "FAST" (Fibromyalgia Antiviral Suppression Therapy) is for Fibromyalgia patients, and some qualifying ME/CFS patients. The study uses a combination of a NSAID medication and an antiviral medication (there are 3 types of each that work) to suppress herpes simplex virus (HSV-1), the proposed cause of Fibromyalgia and perhaps ME/CFS. Patients interested in getting in the clinical trial should have their doctors contact Dr. Pridgen directly at tsasurgery(at)gmail.com Here is a list of the 12 sites conducting the study.

IMC research sites for PRID-1 Study (FAST-fibromyalgia antiviral suppression therapy)

1) Aftine MD - Medford, OR
2) Bateman MD - Salt Lake City, UT
3) Dikranian MD - San Diego, CA
4) Garcia MD - Sacramento, CA
5) Graves MD - Evansville, IN
6) Lafata MD - Vista, CA
7) Lockwood MD - Lafayete, IN
8) Matthews MD - Jacksonville, FL
9) Prestegard MD - Ann Arbor, MI
10) Rubino MD - Raleigh, NC
11) Williams MD - Birmingham, AL
12) Huffman MD - Tampa, FL