Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jun 18, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i wanted to report on my 9th appt with dr. lerner.

    i didn't sleep the entire night before the trip and its 2 am now and i still cant sleep. even the benzos have stopped working. the valtrex is really causing me a lot of insomnia and a weird, wired feeling. i will be SOOOO sick for the next few days!

    so i mentioned to dr. lerner that i feel 5-8% improved and he was very pleased. he said that we have to just continue on the protocol. he asked about my energy score. i said i still felt at about 2.5 but my cognitive functioning was tiny bit better, and that this means everything to me.

    i also have what i think is a cold sore and dr. lerner said it probably was. i asked him if he would like to swab it but he said no.

    i asked him how the conference went and he said he was very well received and it went very well.

    i managed to sneak in 3 question: i asked if i could take 5 mg of valtrex a day instead of 4. he said no. he said the dose is calculated by the weight of the person and taking more would not have any greater effect. he said 4 mg is all i need to inhibit the virus.

    i also asked about my lymphoma risk but he said they usually only see that in persons with compromised immune systems and don't really see it in CFS. (levine also told me that once...although i do here the lymphoma risk is greater in CFS patients in some studies).

    also asked if taking long-term antivirals could create resistant virus but he said no...that would more likely happen if you took too little of an antiviral (or he said something like that...my brain is fried.)

    i asked about the insomnia and that usually, even with sleeping pills, i sleep from 5 am to 1 pm. i am up all night. he said since i have been feeling a little better, we will not address that issue for now.

    i asked for my viral titres from the last 3 vistis (i assume he checked tham and decided to take me off the valcyte). turns out he didn't check the titres, which explains the less cost. he will check them on this visit.

    he asked me to return in 1 month.

    hope these updates are somewhat informative.

  2. sascha

    sascha Member

    you are making bits of progress and it may well add up over time so that you feel better and better.

    the sleep problem sounds difficult. are you off caffeine entirely? you seem to have a highly sensitized system- i'm wondering if any foods you are eating are too stimulating for you. is your diet very healthy? there is so much you can do with diet, i am convinced, that can support your healing process. maybe you are already. i'm just thinking there might be some things to counteract that 'weird wired feeling.'

    i'm starting valtrex soon (1 1/2 weeks) and because of how awful i felt on valcyte, i'm apprehensive. especially about feeling anxious, wired, weird which i always felt on the valcyte, plus i had constant toxic feelings throughout my being.

    i've had a wicked bout of IBS which i am counteracting with diet and supplements. when i keep careful on this plan, i do ok- so far, when i go off it - LOOK OUT! i want to soon get back on the healthiest diet possible- veg. juicing and all that.

    very best to you- post your titers when you get them. i'm curious to know what they were and are now. Sascha
  3. ladybugmandy

    ladybugmandy Member

    hi guys! thank you for the posts! i ended up taking my mom's imovane (not avail. in US) to sleep so i managed to sleep a few hours. i do seem to be able to drift off for a few hours in the afternoons and evenings so i will do that.

    great suggestion about the relaxation CD...i will check it out. breathing exercises may help me also.

    it's weird..but i don't feel that my being relaxed is the problem..it's as if my hypothalamus is affected...the night feels like the day. it's like something is going deep in my brain.

    although dr. lerner said lymphoma is not a risk, i think it is....some CFS patients have died from it....but we are being treated so that should make a difference.

    i know that p53 is depleted in CFS patients...and i think EBV depletes this. p53 is some cancer fighting enzyme (or something...sorry brain totally fried LMAO)..we also lack STAT1...some other important thing.....i can't remember lol

    interesting bit about the malaria increasing the EBV-related cancers. ironic...they often say herpes viral infections help protect against bacteral infections.

    i once read that nasopharyngial carcinoma is more prevalent in china perhaps because of some enzyme in the fish they eat that encourages tumor growth.

    i have a huge pack of immunocal left over from when i was trying other things for the CFS....maybe i should try that for sleep. this undenatured whey is supposed to help make antivirals more effective too (valcyte anyway).....but it tates SO disgusting.

    sachsa... you are right....diet is so important...and i have totally slacked off where that is concerned, mainly due to energy. i no longer am willing to expend the energy to make vegetable juice and do the clean up....but i am going to start again very soon.

    i wouldn't worry too much about valtrex side effects...well...for me....it is very different from the valcyte. i don't have the same fevers. i don't feel as if i am putting something toxic in my body. valtrex has been studied a lot and is thought to be a very very safe drug if you drink a lot of water.

    i hope you guys are hanging in there...there is definate reason to hope now....but everything is just SO ridiculously slow....blah...

    thank you so much for your suggestions and concern.


    [This Message was Edited on 06/19/2008]
  4. erica741

    erica741 New Member

    Thanks for your continued Lerner updates. Sounds like you are still on the right track towards slow but steady progress!

    I got insomnia like what you describe on Valcyte, and it was awful. I really feel for you! :-(

    If your mom's sleeping pills helped you, could you get a prescription? Trazodone is another option you might want to try.

    I hope your sleep improves and your progress continues.

  5. Dantes

    Dantes New Member

    Hey !

    I see Dr. Lerner, for the first time, next week.

    I was supposed to see him in January, like LBM but "life" happened.

    So far, with billions of tests, I only seem to have HHV-6. Is there any chance that I can get put on Valtrex only ?

    I ask because I really really don't want to take Valcyte. It seems so hit-n-miss.

    The CFS/ME community just doesn't know how to identify sub-sets good enough yet. I, like everyone else here, have been through enough HELL. I'm not sure that I, or my body, could take the Valcyte. Especially if it is just a roll of the dice.

    I guess these are my two basic questions :

    1. Will I be put on Valcyte, by default ? Due to HHV-6 only [assuming his tests do not show other infections].

    2. Should I be concerned with "catching" EBV, etc. from other patients, on my visit ? I know that sounds weird but I have no idea exactly what I have, how I got it, etc. So I am extremely paranoid... as you can imagine.

    Anyway, sorry for the hijack....
  6. ladybugmandy

    ladybugmandy Member

    hello! long time no hear!

    1st of all....do not be concerned at all about catching anything. the place is very clean and the herpes infections are carried in saliva. the place is top-notch i think.

    2nd of all...i wouldnt be surprised if lerner found other infections in you....his tests seem to be a little differently done, though i do not know the details.

    if you have high HHV6 titres alone, i am afraid that valcyte is the only option as far as i know....but i wouldn't be too worried about it. not everyone has such a hard time on the drug.

    in a few years, antiviral protocols will not be so "hit and miss". they are still trying to determine the proper dosages and time frames. lerner has 20 yrs' experience so in my opinion, he is the best one to see right now.

    good luck to you!!!!!!
  7. Lichu3

    Lichu3 New Member

    Yeah, not sleeping is a horrible, horrible feeling. Low dose trazadone helps me sleep through the night.
  8. ladybugmandy

    ladybugmandy Member

    hi lichu...

    thanks for the suggestion. i am trying klonopin for now..not sure how trazadone compares.

    its not so bad because i am not working and know i can sleep during the day if i have to.

    also, its been so long since i have enjoyed the night..i used to be a nightowl..its kind of cool lol

    i just wish i could see a tiny tiny bit more improvement already.

    hope you are doing OK:)