heapsreal
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- 10,214
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- australia (brisbane)
Hi, just thought it would be good for all the regulars and the newbys to post an update on how we are all doing and brief update om our current tratments etc, just a thought on keeping replies to others down, maybe reply by personal message or start a new thread etc.
here go's, im doing well of late, although going through back problems of late for which i will be going through some procedure to fix it, facet joint arthritis for which i will be getting an ablation (burning of the nerve to the facet joint causing the pain and hopefully be pain free and can ditch the pain meds.
My initial trial of cycloferon which enhances immune function/natural killer cell function went well for the 4-5 weeks i was on it, with a lowering of antivirals doasges at the same time with continual improvement. Post cycloferon had a mini 'crash' so maybe proof it was helping my cfs symptoms, an increase in av dosage helped compensate, which has also helped me realise i need to be on higher dosages of antivirals for them to be effective.
I have remained on a low dose of famvir, 250mg once a day and added 1000mg of valtrex twice a day which helped shorten the 'crash' and improved general condition. I have a reliable source of cheap famvir for which i will increase my famvir dose and temporarily drop the valtrex and maybe add it back if needed, i think i have good improvement on av's but just need to keep the dosage high and have multiple dosages throughout the day as they have short half lives which require multiple dosages to keep the viruses down. Waiting on my order of injectable cycloferon which i hope adds to improving my condition.
my horrible insomnia seems to be under control of late, touch wood. I have multiple strong sleep meds that i rotate between which is helping me to avoid drug tolerence and get good consistent sleep.
Tests show and my response to treatment i think strongly indicates i have some sort of chronic immunodeficiency that cause cmv reactivation and probably ebv which seems to be a mystery has it shows up on tests IgG when it wants too. Im not sure if i will end up being xmrv has these treatments that have been effective for me i dont think would be if i had xmrv, but when testing comes to australia, i will definately go for it.
Im interested to see how everyone else is going, so would be greatful if replies are kept out as these can put threads off track. I think thid will give alot of people info on things to try.
cheers!!!
here go's, im doing well of late, although going through back problems of late for which i will be going through some procedure to fix it, facet joint arthritis for which i will be getting an ablation (burning of the nerve to the facet joint causing the pain and hopefully be pain free and can ditch the pain meds.
My initial trial of cycloferon which enhances immune function/natural killer cell function went well for the 4-5 weeks i was on it, with a lowering of antivirals doasges at the same time with continual improvement. Post cycloferon had a mini 'crash' so maybe proof it was helping my cfs symptoms, an increase in av dosage helped compensate, which has also helped me realise i need to be on higher dosages of antivirals for them to be effective.
I have remained on a low dose of famvir, 250mg once a day and added 1000mg of valtrex twice a day which helped shorten the 'crash' and improved general condition. I have a reliable source of cheap famvir for which i will increase my famvir dose and temporarily drop the valtrex and maybe add it back if needed, i think i have good improvement on av's but just need to keep the dosage high and have multiple dosages throughout the day as they have short half lives which require multiple dosages to keep the viruses down. Waiting on my order of injectable cycloferon which i hope adds to improving my condition.
my horrible insomnia seems to be under control of late, touch wood. I have multiple strong sleep meds that i rotate between which is helping me to avoid drug tolerence and get good consistent sleep.
Tests show and my response to treatment i think strongly indicates i have some sort of chronic immunodeficiency that cause cmv reactivation and probably ebv which seems to be a mystery has it shows up on tests IgG when it wants too. Im not sure if i will end up being xmrv has these treatments that have been effective for me i dont think would be if i had xmrv, but when testing comes to australia, i will definately go for it.
Im interested to see how everyone else is going, so would be greatful if replies are kept out as these can put threads off track. I think thid will give alot of people info on things to try.
cheers!!!