CFS: Another antiviral update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jan 21, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. wanted to give you another update if you don't mind.

    i have had CFS for 16 yrs after EBV infection and in the last 3 years, it had become severe. i have been seeing dr. a. martin lerner in michigan since jan of 2008.

    by mid-november 2008, i had improved about 35 - 40% on a combination of valtrex and valcyte. however, my liver enzymes became elevated and dr. lerner took me off the valcyte.

    by early december, i had declined completely and started experiencing chest pain, burning in my stomach, and nausea. upper GI X-rays and h. pylori test revealed nothing but mild acid reflux.

    dr. lerner ordered a holter, echo and more visits. i stayed in michigan for quite a while and my life had become unbearable, with severe brain fog, and malaise.

    my holter and echo were satisfactory and my liver enzymes finally lowered so dr. lerner agreed to put me back on valcyte at 450 mg daily (i was taking 450 mg every other day before).he told me to stop all sleep meds and wanted to make sure i was on as little medication, aside from the antivirals, as possible.

    now, a few days after going back on valcyte, i have started to improve again. depending on the day, i am between 10 and 40% better.

    before seeing dr. lerner, i was on 900 mg of valcyte daily for 7 months. nothing much changed at that time. however, seeing dr. lerner changed everything. i believe his technique of combining valcyte with valtrex is the key for many cases. a few months after his protocol, my RNase L had dropped dramatically (unfortunately, my EBV and HHV6 antibodies have never been very high so they don't tell me much).

    i am hoping that i continue to improve but i am aware that it will take a long, long time, perhaps especially since my body seems to not be producing enough antibodies (?).

    i have a liver CT pending. dr. lerner also wants a mammogram and pap smear. i hope all is normal so i can stay on valcyte since i am sure now that i need it badly.

    thanks for reading.


    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/21/2009]
  2. Forebearance

    Forebearance Member

    Good luck, Sue! I hope you feel better soon.

  3. ladybugmandy

    ladybugmandy Member

    thanks, guys. yes he is letting me do the liver CT, mammo, and pap in canada thank God. the echo in his office alone cost me $750 US....ugh.

    that was a very rough trip! this is the hardest thing i have ever done.

    your support really helps and i hope you both are doing OK too.

  4. Smurfette17

    Smurfette17 New Member

    I just wanted to tell you how much your posts help me, Sue. As a patient of Dr. Lerner (since Sept 2008), it is really helpful to hear what course of treatment he is prescribing for others.

    I have been on Valtrex for the last 3 months (just switched to Famvir due to possible stomach problems). I did not see symptomatic improvement with the Valtrex, but my EBV titers are now negative (like you, they were never sky high). My HHV-6 has recently become positive (1:160, again not off the charts). I have an appt next week and he wants me on Valcyte. Although scared of the Valcyte side effects/herx, I also figure that I feel so crappy right now, that I have little to lose.

    Like you, I am also dealing with this liver issue. Last time, one of my enzymes has elevated. I hope it is down now, bc I know I need to start Valcyte!!! I do take a lot of other meds: Atenolol (prescribed by him), Ambien and trazodone (to sleep), and occasional migraine medication. I am worrying that he'll have me go off everything for the sake of the Valcyte. The Ambien and trazodone are not great for my sleep, but they help *some*. Sigh. This disease presents so many challenges to manage.

  5. quamijay

    quamijay New Member

    So happy you are doing good now Sue.

    How is Dr. Lerner with letting you do tests else where? Did you just ask him, or the nurse at reception? He asked me to get a Sinus CT at beaumont but because I'm not insured in America, it costs around 10x the amount that it does in my home country?

  6. ladybugmandy

    ladybugmandy Member

    hi everyone!! thank you for the encouragement. although i was always pretty sure that antivirals were the way to go for me, i could never be completely certain they were working until now, because even the brain fog - the only symptom that brought me to the brink many a time - is slowly improving. i cannot describe my gratitude for this turn of events.

    smurf....i am excited for you and your upcoming valcyte protocol. please keep us posted! you know if you can import artesunate from europe??

    lol its funny about the cold weather. i grew up in northern quebec (snowiest town in canada most years) so the weather here is nothing for me!

    quam...dr. lerner insists that heart-related testing and blood work be done in michigan but seems to be OK with my getting most other tests in canada. please ask the doctor directly about this, as the staff is often incorrect.

    also, don't forget that beaumont charges uninsured patients 40% less.

    best of luck to all
    [This Message was Edited on 01/22/2009]
  7. redhummingbird

    redhummingbird New Member

    Thanks for posting your update Sue. It sounds very encouraging. I believe you are going to have great improvement eventually. You have such a determined spirit.

    I'm glad you are feeling a bit better. Also, good news about your improved cognitive functioning!

    Sending you positive thoughts on continued improvement and no more increased liver enzymes.
  8. heapsreal

    heapsreal New Member

    Good to here your getting better. Could sense your frustration over the last few weeks as you were on the look out for everything and anything that could help you (more then what we all normally do anyway, LOL). Hope that liver behaves its self for you. Look into N-acetyl cysteine an amino acid which helps with liver detox and hospitals use it for tylenol overdoses.
    good luck
  9. ladybugmandy

    ladybugmandy Member

    heap....thank you. it is in part because of your suggestion that i have been taking N-A-C for the last few weeks. i actually bought it long ago on dr. leo galland's recommendation but hadn't taken it. i wonder if this has anything to do with why my liver enzymes normalized at dr. lerner's office. may be worthwhile to ask loomis if there is a way to import artesunate. perhaps contacting the grad student who gave the artesunate presentation at the HHV6 conference or the doctor he works for would yield some leads.

  10. ladybugmandy

    ladybugmandy Member

    red...thank you for the kind post. i think of you often and am sending positive thoughts your way, too.

  11. cherylsue

    cherylsue Member

    Hi Ladybugmandy,

    I recognize your name from when I used to frequent this site. I'm sorry you are suffering. I read that Dr. Teitelbaum no longer thinks highly of Valtrex for treating viral conditions. He's favoring Valcyte.

    Also, your symptoms seem a lot like Lyme. I was misdiagnosed for 7 1/2 years with CFS. When I contacted the Michigan Lyme Assn. they referred me to Igenex Labs and a well respected Lyme specialist.

    After treating for 9 months, I returned to work in August. I'm certainly not 100%. Maybe 85% on a good day. However, I'd be a lot worse if I didn't take the steps I did.

    Good luck to you.

  12. ladybugmandy

    ladybugmandy Member

    hi cheryl! wow! i am so happy to hear of your improvements. that is amazing news.

    i guess it wasn't too clear in my post but i am improving again since being back on valcyte. i hope it continues!

    i was tested for lyme twice, once at igenex and once at labcorp. it was always negative. also, i do not think i was ever bitten by a tick.

    thank you for the well wishes!

  13. ladybugmandy

    ladybugmandy Member

    hi kelly. how are you doing? how is the artemisinin is working for you?

    my improvement has plateaued at 20-25% now, which is not enough! i am thinking of adding artemisinin to the antivirals but i don't know of anyone who did this or if it is safe.

    strangely, my local GP who writes my prescriptions, has refused to give me Isoprinosine, stating that he has not had good results with it (even though i do not think he used it with antivirals).

    ampligen will likely be approved in the next 3 months...wonder if you or anyone else reading will be taking it if insurance permits? (i am in canada so out of luck so far!)

    thank you

  14. ladybugmandy

    ladybugmandy Member

    hmmm..i just found 2 recent articles stating that atemisinin showed no acitivity against HHV6:

    wonder if i should try red marine algae?

    the above article says 9-(S)-[3-hydroxy-2-(phosphonomethoxy)propyl]-3-deazaadenine has a lot of anti-HHV6 activity. wonder what it is??

    [This Message was Edited on 01/31/2009]
  15. ladybugmandy

    ladybugmandy Member

    yea...that drug isnt even close to being commercially available yet.

    i am wondering if IV vistide wouldnt be better for me. valcyte seems to have very limited benefit for me and dr. peterson specifically said he prefers vistide at the HHV6 conference.

    i guess its a moot point because i cant get it here. Dr. L said he has a lot of experience with it and it is very toxic etc. i wish he would look at the artesunate literature i gave him.

    you mentioned you took probiotics...did you know you had gut permeability issues?

    the cervical biopsy test for enterovirus is a great idea. i have not contacted chia's lab. it is frustrating because i can only really make headway with new ideas when i have less fog, which isn't often.

    [This Message was Edited on 01/31/2009]
  16. outofstep

    outofstep Member

    I just heard from a reliable source that Chia thinks that Valcyte may actually activate enterovirus infections!

    However, have either of your heard of anyone having both HHV-6 and the Chia enterovirus-from what I've read they are finding one or the other.
  17. Timaca

    Timaca New Member

    I do know of people who have HHV-6 and enterovirus, plus other pathogens like Cpn, coxiella, EBV, etc.

    It's possible to have lots of pathogens that have reactivated (unfortunately).

    Best, Timaca
  18. outofstep

    outofstep Member

    Thanks, yeah I have other stuff too but for some reason thought that Chia had found a specific enterovirus that was not found in people w/ HHV-6
  19. ladybugmandy

    ladybugmandy Member

    i wonder if i should change doctors to one who will be willing to order an upper endoscopy. lerner will not listen. ugh..what a mess.

    since i have improved and then declined rapidly on valycte twice now, there have to be other pathogens at play.

    has anyone tried oxymatrine to see if anything happens, despite not having had an enterovorus test?

    loomis keep saying maybe i have a smouldering infection, which present antivirals will not touch - but what do i do about that??

    should i try to order artesunate from overseas? should i stay with valcyte for years to see what happens?

    i am desperate, sick, lost, confused, hopeless, and becoming penniless.

    sorry to whine...

    thank you
    [This Message was Edited on 02/01/2009]
  20. outofstep

    outofstep Member

    The next couple of months might change things-FDA is supposed to decide re: Ampligen on the 25th-since it's 2nd gen. interferon and is an immune modulator it has the potential to kill off many things (if approved). Also the Reno conference could have some important info from WP and others. I'm waiting to see what happens before trying something new-probably pursuing the Chia stuff in one way or another, and/or overseas antiviral if nothing pans out. It's just a month and a 1/2 to wait and I'm getting really fed up with being a guinea pig.