Relatively new to board and going to see Dr. Lerner

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Jul 18, 2008.

  1. SpecialK82

    SpecialK82 New Member

    Hi Everyone,

    Just wanted to introduce myself and tell you after researching all the great posts on here about Dr. Lerner, I decided to make an appt with him myself.

    I've been diagnosed with FM over 10 years ago, but have rapidly declined in the last two years (am wondering if I have CFS as well). I am still able to work 3 days a week but it has become more and more difficult to deal with the fatigue. Last year I went to the FFC in Cleveland for awhile. They gave me alot of supplements, B12 injections, etc. but I seemed to continue to go down hill. I think maybe I tried too many things all at once - I had a huge crash after about three months and just didn't have the energy to make the 8 hour round trip to see them anymore. Also, started getting nervous about all the $$ I was spending without good results!

    Anyway, I was very thankful for all the tests that the FFC ran on me and they did find that I had reactivated EBV.

    EBV EARLY AG (R+D) IGG 1:320

    EPSTEIN BARR VCA IgG 1:10240

    I have never had any treatment for this as of yet. My family doctor here tells me that EBV reactivation is not "mainstream" thinking, etc, etc. (So I guess I can't be having problems if I don't have a mainstream condition). I don't know if she is totally convinced FM is real..

    I am so grateful to all of you who are posting your experiences with valtrex, valcyte, Dr. Lerner, Montoya, etc.

    My appt with Dr. Lerner is on Aug 1 and I hope that I meet his criteria to be treated with antivirals. I'm not sure if I will need to show the inverse T waves on the EKG??

    I'll definitely let you know how everything goes. I'm a lttle worried about the energy to travel - especially the number of trips that will be required. It's about a 4 hour drive so I think we will drive up the day before and stay in a hotel and drive back the next. This will get too expensive to do often but will try if I can.

    Thanks again for alot of great info - I'm so happy I found this board.

    Hugs, Kristina

  2. simonedb

    simonedb Member

    "One of our knowledgeable posters, lichu3, once said something to the effect that doctors are taught that IgG titers are past infection. So I'm not surprised you got that reaction, I've gotten it too."

    hey could you guys explain that to me more? I have encountered that thinking by mainstream docs . But that is the case with healthy people they might show up as having been exposed to herpes for example but if they arent suffereing now the doc wouldnt treat them. So what is the difference, the marker, how can a doc differentiate when the labs indicate a problem or just something long ago no longer relevant?
  3. chrissy12

    chrissy12 New Member


    I am a patient of Dr. Lerner's since December. I was diagnosed with HHV 6, EBV, CMV and mycoplasma. I truly trust him and what he is doing. I take valtrex, valcyte and now azithromycin for the mycoplasma. He watches all of the numbers and if anything is happening, he will call you and adjust your medicine. I just got a call a week ago, and they lowered my valcyte dose.

    I have noticed in the last few weeks that I have had some improvement. It is a slow process and he tells you to be patient.

    I travel 4 hours one way, too. In the beginning, we would spend the night and then go home the next day. We now start out around 8 and get home around 5. I couldn't do that if I didn't have someone help me drive. I have never done it alone. I would have to spend the night and return the next day.

    I wish you lots of luck. If you have any other questions, please let us know and we will try to answer anything for you. It does take about 4-6 weeks before you will actually take some medicine. He does a lot of testing first to see where you are.

    Take care, Cindy
  4. ladybugmandy

    ladybugmandy Member

    hello! i haven't read all of the posts above due to fog, but i think you are making a good choice trying dr. lerner.

    please remember not to take his sometimes abrupt manner of speaking personally, or his serious manner as arrogance. he is a wonderful, caring man who is not in this for the money as so many other CFS doctors are.

    you may not get the impression that he welcomes a lot of questions but i believe it is because he is just very pressed for time and trying to focus.

    do what he says, trust him, and be very patient.....i think your EBV results show that you would be amenable to antiviral therapy.

    best of luck,
  5. SpecialK82

    SpecialK82 New Member

    You guys blow me away with all your support and knowledge! Thank you for all the great advice and well wishes. Yes, I definitely feel lucky to be able to see Dr. Lerner and I've already asked my husband to keep me in check when I'm there so that I don't ask many questions. That is counter-intuitive for us like you said, but I am willing to bark like a dog at this point if he can make me better. LOL!

    Kelly(empty2void) My appt is early at 9:30 so hopefully I can make it OK with fasting. I forgot that Lerner developed his own EBV & CMV tests, I'm glad to know that maybe he will find more pieces of this puzzle for me. Thanks for telling me about the EKG and chest x-ray - does he do all that in his office or does he send you to another facility? I'll check out the Hawthorn Suites for future reference - they all sound like they are pretty pricey - I think my husband booked us at Homewood Suites which is not cheap either.

    jam338 I am so sorry to hear of you long struggle with EBV, I'm glad you found a doctor who is knowledgable now although I know it's no small thing to pay out of pocket. How long have you been on the Valtrex with him - and how much do you think it is helping? Please don't ever apologize for a long post as I hang on every word from anyone who can relate to these issues and am grateful for all the effort you put into writing back. I'll check into the Kirkman magnesium cream - I haven't heard of it before, I'll be interested to look it up!

    Cindy(chrissy12 and Sue(ladybugmandy) glad to hear Lerner patients are happy with him and trust him. I'm thrilled for both of you since you have each said that you are seeing some improvement. Yayyyyyy! There are so many dead-ends in trying to treat this DD, don't you love when you actually hit on the right thing and see something positive happening. I couldn't be happier when I hear that something is working for someone - it gives us all hope!

    Hugs! Kristina

  6. SpecialK82

    SpecialK82 New Member

    Kelly - Wow, that's really a good price for Hawthorne, better than I was expecting and I do have AAA. I thought too maybe some of these hotels may have a rewards program and it might be worth it to get into one and save some money if we will be spending alot of time in hotels. And thanks for the info on the testing in his office, it's nice we don't have to run around too much!

    jam - I understand what you are saying about the Valtrex, it's going to take some time to see anything, I'm sure that I'll get anxious at times waiting. I've only heard postive things about transfer factor so hopefully you'll be feeling some improvement shortly. I have definitely been inspired by ladybugmandy's postings as well and will try to post the same play by play details after my visit.
    I would love someone to explain how the antivirals work as it is confusing. I'm not sure if the titers even normally go up at first during the die-off phase and then start to decline? Some of the posts go over my head when it gets very technical. I guess I don't even understand why antivirals can bring the viral load down but it can never eliminate it completely....
  7. ladybugmandy

    ladybugmandy Member

    hi there. antibodies can give us a clue as to whether a virus is active or not, but it is far from a fool-proof method.

    some doctors have reported an increase in antibody titres at certain stages of treatment but i do not think this is universal.

    antivirals stop the virus from replicating at a certain stage of the lifecycle or from entering a new cell... i think.

    the drugs cannot eliminate the virus because much of the virus is in a dormant (latent) state inside our cells and is not effected by the antiviral drugs.


    ps.....i am not 10% anymore..more like 5-8%. i am going to see dr. lerner this wednesday.
  8. SpecialK82

    SpecialK82 New Member

    Great to hear from you Sue! I see what you're saying about antivirals just stopping the replication - that does ring a bell now that you mention it. So I'm wondering, if the virus was completely in a latent stage would we still be feeling the symptoms or do we only feel the symptoms when it is in an active stage?

    I am so sorry to hear that you don't feel 10% anymore, what a bummer. I know there are so many other variables in our day to day lives it's difficult to even tell what is impacting our health negatively or positively. I am praying for your visit with Dr. Lerner on Wednesday that he can provide you with some renewed peace and hope. It sounds like you have a really good relationship with him, so maybe you'll be able to have a good conversation with him. I'll be anxious to hear what he says. Travel safely!

  9. netransplant

    netransplant New Member

    Hello Kristina:

    I read your threads and now I am curious how you made out with Dr. Lerner. In the last seven weeks, I have had five consults and each time, I think, 'they will have the answer.' My appointment yesterday was a bit disappointing but I have to focus on the fact that they do not think my symptoms are cancer related. I am curious about your situation given I have the same EBV IgG titers. I am on Valtrex now. I hope that you get a great result from Dr. Lerner. BTW, I tested positive for EBV in 4/90. If you want to know who I am handling Valtrex, check out the post regarding the Valtrex poll. God speed to you and all of us for our suffering.

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