CFS: Antiviral update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Mar 4, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. if anyone is following my posts, just wanted to let you know that i have started feeling better and my fog is maybe 30% less. i waited 10 days to post to make sure it stuck! lol

    (CFS: 17 yrs, antivirals: > 1 1/2 yr)
  2. 28years

    28years New Member

    That's great news!!!!

    I know you have gone through a lot to stick with the antivirals.

    As you have pointed out to me -- improvement in neurocognitive symptoms is the best indication that the treatment will work for you.

    I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!
  3. ladybugmandy

    ladybugmandy Member

    thank you:) that is very kind. how are you doing on the protocol?

    its interesting because i have spoken to many patients now who are on slightly different antiviral protocols under different doctors and i get the impression that lerner knows something more than the others.

    i was on valcyte for quite a while before i saw lerner and did not really feel real improvement until far into the addition of valtrex to the regimen. however, taking away valcyte made me very very i am convinced that many people may need both drugs at the same time but i am not entirely sure why, unless valtrex (and famvir?) is the one with any real action against EBV.

    my antibodies aren't even very high and the viruses barely register as active but they definitely are active.

    having to take valcyte and even valtrex lifelong at these doses worries me, though...but anything is better than the severe CFS i had.

    i am still nowhere near ready to do much (, have a social life, study, etc) but i think i might be one day.


  4. 28years

    28years New Member

    I plan to post am update on how I'm doing soon, relativity soon that is. But basically I continue to improve.

    I wanted to mention that I am concerned that going to see Dr L. might hamper your recovery. I remember at one point you were thinking of moving near him, but I lost track of what happened with that.

    Anyway, may I suggest that when you do go to see Dr. L that you make full use of the services the airlines are required by law to give to disabled passengers.

    When I went to see him I was picked up at the curb by an attendant with a wheelchair and they wheeled me through the whole airport --through check in and the security check-- right up to the door of the plane. On the return flight they picked me up at the airplane door and wheeled me though to the curb.

    Call in advance about it. And when you get your ticket state that you are disabled and will need assistance.

    I cringe at the thought of your exhausting yourself trudging through the airports with your luggage.

    I think the more rest and the less you push yourself the better off you will be.

    Wishing you the very best.
  5. ladybugmandy

    ladybugmandy Member

    that is so wonderful that you continue to improve. i can hardly hold in my excitement for you!! you have been sick so long, you must be ecstatic at any improvement.

    unfortunately, i really did push myself when i went to see dr. lerner all those times. i left the house at 6 am and returned at midnight. i could not afford the plane so i took the train. it was very grueling but i couldn't afford to stay the night.

    moving to windsor didnt work out. the place was a dive. i don't know what i was thinking. i took all my luggage and ended up 1/2 dead from that trip. i ended up at a hotel in MI for extra medical tests and spent a small fortune.

    luckily, things are going smoothly now. my liver enzymes are stable and because i am a little better, the trips aren't that bad or as frequent now. i do my best to rest on the train. i just hope i don't backtrack again.

    please keep in touch. i think of you often and wish you all the best.


  6. heapsreal

    heapsreal New Member

    Good to see you moving in the right direction again.
    Im still doing ok on the famvir but Im starting to think these viruses are triggers and opportunistic infections, it takes time for the body to heal or things to help sort out the hpa axis. Im looking further into different hormones like testosterone, dhea and cortisol as well as melatonin, hopefully getting these things to the levels they need to be at can help strengthen my system to help fight infections and help it heal properly. The antivirals definately have stopped my cfs crashes, just need that top end speed, lol.
  7. ladybugmandy

    ladybugmandy Member

    so glad to hear your crashes have stopped. is there a doctor you have in mind to see regarding hormones?

    i am sort of stuck because i definitely do not want to stop seeing dr. lerner and he doesn't do other things such as hormones, etc.

    best of luck
  8. heapsreal

    heapsreal New Member

    An intergrative medicine doc would be the one to help with hormones etc. Im in australia so its a bit of a trip for me to point you in the right direction as far as docs go, lol. Although you could get a good holiday. Have you read the book "from fatigue to fantastic" by dr tetlebuem. He seems to marry all the treatments together really well, sleep, hormones, infections and nutriton. Its worth the read. I think you may need to add other aspects to your treatment, its the sum of them all that help.

    good luck, keep in touch
  9. ladybugmandy

    ladybugmandy Member

    please feel free to email: