Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Apr 3, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all! i went to see dr. lerner again...

    because my EBV EA antibodies again appeared slightly elevated, he wants to add valtrex to my regimen (i was hoping for this).

    after 1 week, when my antibiotics for the skin staph infection will run out, i am to start valtrex 1 tablet 4 times a day.

    i am also on valcyte 900 mg a day.

    he told me to take robitussin for my hacking cough.

    as some of you know, i recently contacted my father re: finances. dr. lerner asked me what my relationship with my father is like. i told him that i hated my father due to past abuse.

    dr. lerner informed me that my father had called him. he told me that my father talked but was given no information. dr. lerner said he just listened.

    i can just imagine with that bozo said.

    anyway, i told dr. lerner that my father is not supportive of my treating this illness and dr. lerner advised me to not talk to him since it will cause me stress and will only compromise my health.

    he asked me how i was paying to see him and i told him my mom had some savings. i don't know if this was the reason, but when i went to pay for my visit and tests, it was $100 less! he also said i could wait a month to see him again since my liver enzymes were normal!

    i asked dr. lerner if he really thought i would get better and he said yes and i think he said it would take 6 months to a year (my brain is totally fried right now).

    i told him that the brain fog is my worse symptom. he asked how it felt and i described it, along with the neck pain.

    i met 2 patients in the waiting room. 1 woman was about to have her 1st appt and i told her about the treatment and how great dr. lerner is. she also has support only from her mother, with her husband not believing she is sick.

    the other patient had been sick 15 years and been in treatment for 4 years. she is now able to work 28 hours a week and needs 11 hours sleep. she says she is very happy with dr. lerner. we all agreed that he is amazing.

    needless, to say, i left the office very pleased. i had also saved $40 this time by taking the bus across the border.

    thanks for listening all....


  2. erica741

    erica741 New Member

    Sorry about your father...he doesn not sound pleasant. But I am glad that you have a very caring and supportive mother and now a wonderful doctor too!

    Dr. Lerner seems very reputable and I would doubt that he would continue to take your money if he wasn't certain he could help you. After all you have been through, 6 months to a year is not long to get better, especially since a most of that time will be waiting for the Valctye and Valtrex to do their thing.

    It sounds like your staph infection is better? If so, that is a very good thing for your recovery. That is just one less thing that your body has to battle.

    Thanks for keeping us posted!


    [This Message was Edited on 04/03/2008]
  3. Slayadragon

    Slayadragon New Member

    I'm really glad to hear your report, Sue. Dr Lerner sounds wonderful.
  4. chrissy12

    chrissy12 New Member

    I am sorry you have to deal with your father. I think Dr. Lerner is right about staying away from him for the sake of your health. I am very pleased to hear about Dr. Lerner's support of you. It sounds like he really cares about you and your situation. It is encouraging to hear him say you will improve in 6-12 months. He believes he can help you and you need to hold onto that. 6-12 months is a short time compared to the time you have been dealing with cfs. Our thoughts are with you. Take care
  5. Timaca

    Timaca New Member

    I'm glad to hear that your appt went so well!

    It is wonderful that Dr. Lerner considers the whole person, even relationships! How kind of him to reduce his fee for your circumstances as well!

    What was your EBV EA antibodie titer?

  6. ladybugmandy

    ladybugmandy Member

    thanks alot everyone, for your ongoing support. i do feel reassured, at least more so than before.

    i agree...dr. lerner wouldn't have paid much attention to my father. i definitely do not intend on contacting him again. a few hundred bucks a month is just not worth it when my father is involved.

    i have been on valcyte now for about 7 1/2 months in total (i took 1 1/2 month off while changing doctors).

    i am sure the lady in the waiting room had been on antivirals and/or antibiotics since this is what dr. lerner uses to treat CFS and whatever pathogens a person has...but i did not have time to ask her.

    i realistically do not think i will be well in a year but all i want is to start improving even a little. that would make me so happy.

    timaca....my EBV EA was once 25, once 23, twice low, and i dont know what it was the last time. normal is 0-20. dr. lerner does this test at his own lab. i have taken the test at specialty labs twice and it never showed elevation before.

    i am really not sure why i was charged less (it was actually about $140 less now that i look at the receipt). dr. lerner certainly did not spend less time with me.

    he is truly a wonderful man. i have never met a doctor like this before. if only there were more like him!

    all the best

  7. hollie9

    hollie9 New Member

    This one comment of Lerner's:

    "dr. lerner advised me to not talk to him since it will cause me stress and will only compromise my health."

    helped me because my mother is so very toxic and causes me so much stress. Shrinks have been telling me for years to not talk, write, or read anything from her. Now this further validates this.

    I wonder if we would even have this illness if we didn't have such "stressful" parents?

  8. pawprints

    pawprints New Member

    Good going!!!
  9. ladybugmandy

    ladybugmandy Member

    hollie...tell me about it! thats my life story! lol


  10. slowhand

    slowhand New Member

    What happened with the elevated liver function tests, and did you resume valcyte at two pills every morning.I am also seeing Dr.Lerner in Detroit,Michigan.
  11. slowhand

    slowhand New Member

    Do you still see Dr.Lerner every 6 months?
  12. ladybugmandy

    ladybugmandy Member

    jam that is very interesting. my CFS has always been the type where most of my fatigue comes from the brain...and my symptoms have always been mostly from the neck up - i definitely have a major brain infection.

    if i talk to someone that stresses me out, i cant take it. its like i am in a cage. i get exhausted afterwards and my brian fog becomes SO much worse.

    i guess it would be very important to keep stress levels down and maybe not read too much and get worked up. dr.lerner has a point for sure.

    unfortunately, last night i stayed up late reading scientific articles about the epstein barr virus and its association to cancer and MS....not too smart LMAO. i had read about this many times before but this time, i got into more depth.

    i did find out about a new drug called maribavir, which is in the pipeline, and will work well for CMV and EBV, without the potential toxicity of valcyte. it is in stage 3 trials i think.

    tonight,i called my estranged cousin to offer my condolensces since her father just died. oddly, i had to listen to a 2-hr non-stop lecture about how i could cure my disease with mind-over-matter thinking and accupunture. i wanted to scream.

    i am exhausted now and have a new determination to stay the heck away from anyone and everyone even slightly stress-causing.

    anyway, thank you so much for the kind words. {{{{{{{{{jam}}}}}}}}}}}}

    hope you are having a good night.
  13. ladybugmandy

    ladybugmandy Member

    hi slowhand. i am seeing lerner approx. every 2 weeks. i have been going for about 2 months and have been on valcyte 7 months. no improvement yet.

    dr. lerner called me today. the culture he took of the boil on my back came back today and apparently, the antibiotic he prescribed is not the right one for the bacteria...so now i have to take Septra for 2 weeks and see him in 10 days!!!

    i also have to wait to start the valtrex until after i see him and have my liver enzymes checked..

  14. acer2000

    acer2000 New Member

    There is also a drug under study that inhibits CMV (and maybe HHV6, I don't know) called CMV 423.
  15. ladybugmandy

    ladybugmandy Member

    hiya! thank you:)

    i see dr. lerner in about 11 days...i am going to ask him whether taking antivirals long-term can create drug-resistant viral strains. i have been worried about that.

    i did learn more about ebv but i cant remember much of it....but if your viral titres are high, i am sure you will respond to antivirals!

    they said even valtrex is not really good for ebv but i think its all they have right now. maribavir works in another way..on the nucleus of the virus i think(?)...so i think it might be better for cancers that ebv causes. valtrex doesn't really help much in cancers.

    arsen...that is good that there are so many new drugs in the works! there are some others i read about too....

    i know they are working on a vaccine for ebv and getting pretty close.

    thank you for reminding me to have patience. its so hard when you are so sick. i could definitely use an anti-anxiety med. i woke up today with my muscle twitching and a strange feeling in my head and am convinced i am developing MS. i just cannot stop worrying. i even had weakness in my ankle yesterday. creepy.

    if i do get an anti-anxiety med, then i have to worry about the withdrawals once i want to get off...ughhh

    dr. lerner did say he would not have a problem with my taking klonopin.

    well good luck guys...i hope this gets a little easier...:(

    thanks again
  16. slowhand

    slowhand New Member

    Hi Lady bug, Do you take the 900mg (2 pills) once in the morning ? Also, please tell me if these frequent visits include liver function monitoring because i do not see him that often,but something tells me it is a good idea. Why doesn't he prescribe one pill in the morning and one in the evening like Dr.Montoya at Stanford?
  17. ladybugmandy

    ladybugmandy Member

    yes! the frequest visits include liver monitoring. i think thats why he is asking me to come more often right now. my liver enzymes were abonormal once and i just started seeing him a little while ago so we are still adjusting doses.

    i am on antibiotics for a boil and i have to add valtrex soon. once my doses are stable and my enzymes are stable, i am sure i will not be going to see him that often.

    there was also a question as to whether my ebv was active or not, because it would show up a little active sometimes but not others...so this had to be sorted out.

    also, i have not begun to respond at all to treatment..maybe that has something to do with it, too.

    there is some confusion about montoya's dosing. i thought it was 450 mg twice a day but some people have told me it is actually 900 mg once a day.

    i have no idea why dr. lerner uses 900 mg once a day but i think it is to maximize the blood levels of the drug for some hours of the day maybe?

    he said the valcyte stays in the blood for 14 hrs i think...but i am not 100% sure i remember this correctly.

    good luck

  18. acer2000

    acer2000 New Member

    I wonder if its common for people to have liver enzyme elevations on Valcyte? I read the study at stanford and I didn't see anything mentioned about it. Dr. Lerner checks mine, but my other Drs. that I have seen (some of which use Valcyte all the time - on cancer/transplant patients) told me they never see liver enzyme elevations on Valcyte, only the low blood counts, etc... its hard to know who to believe. [This Message was Edited on 04/05/2008]
  19. ladybugmandy

    ladybugmandy Member

    hello! i think it is fairly common. i have no idea why mine were elevated but i think it was just a fluke because it had never happened before and i wasnt even on antivirals when it happened - i had been off them for 1 1/2 month.

    i hope it doesnt happen again cuz it means more trips to michigan!

  20. slowhand

    slowhand New Member

    Do you take 900mg once a day?