Dr. Lerner...

Discussion in 'Fibromyalgia Main Forum' started by chrissy12, Oct 20, 2009.

  1. chrissy12

    chrissy12 New Member

    I am back from MI and wiped out.

    I did have a conversation with Dr. Lerner regarding XMRV. He is very excited about the research and did call Dr. Mikovits to congratulate her on her findings. He did say he would like the study to be replicated.

    I asked what he thought of Dr. Mikovits and he said she is an excellent doctor and researcher.

    I asked about treatment for it and he said if it gets replicated, they will have to find the drugs that works. He believes it will be a combo of what he is doing and retrovirals.

    I asked what about people who did not have the viruses. He said they will still probably test for XMRV because there are many different infections; lyme, myco, babeoisis, etc. related to CFS.

    I asked him if the valcyte would skew the results and he said no, he didn't think it would.

    That's all I can remember right now, but I was really happy he is on board with all of this research. He did say he has a manuscript that is being close to publication regarding his treatments. He believes the two would work together.

    He did say that they will not be able to tell us anymore that it is a "mental" disease and he smiled and is happy about that. My opinion is that Dr. Lerner is thrilled with the news and that it is getting some much needed press, and hopefully money for research.
  2. denis321

    denis321 New Member

    thanks for sharing, Chrissy!
  3. jasminetee

    jasminetee Member

    That's fantastic that Dr. Lerner is on board with the XMRV finding too. Hoooooooray! I emailed your post to my folks because they're always interested in hearing what other CFS Specialists have to say. I'm so glad you can see Dr. Lerner.

    How long have you been on Valcyte and is it helping you? Also, did you test positive for HHV6? I did Valcyte for 7 months but it only made me worse but we didn't test for HHV6 in me as my doctor said it could hide and also we knew I have EBV and in 2007 they were saying it was helping PWC who were EBV-only.

  4. chrissy12

    chrissy12 New Member


    I have been on valcyte for 1 1/2 years. Amazing to me. I did have a break for about 1 month when he put me on IV's. So far, I have been able to take the medicine without too many problems. Sometimes though, I feel toxic and I would like to try going off of it. I keep asking him when and he says he usually takes someone off when they are a 7. I am only a 4 on his scale. I don't know what's going to happen.

    Yes, I do have hhv 6. It went down for about 4 months and then went back up. I go with a friend from Ohio and she got her labs today. Her CMV went down 100 points and her hhv6 went down to 1:160 from 1:640. I read on Cort's board where Dr. Lerner says sometimes the virus comes down and then the patient starts to feel better.

    I think my mycoplasma are running the show in my body and they don't want to come down. I did ask him if they could be tied to the XMRV and he said yes, so I am hoping if treatment comes out for XMRV, that maybe I could bring all the other stuff down, too.

    I was really relieved to hear him be so in tune with Dr. Mikovits that he even called her.... He is watching everything that is happening.... Makes me happy!!!!!
  5. jasminetee

    jasminetee Member

    Sorry to hear you're not getting quicker results. I'm very interested in hearing how you do in the future. Dr. Lerner must have quite a lot of success stories too.

    I'm glad he is keeping abreast of all the new info regarding XMRV. It's just so compelling I can see why it's uniting all the CFS Specialists. :)

  6. chrissy12

    chrissy12 New Member

    Yes, I am moving slowly, but surely. However, I go with a friend to MI. She started in May, 2008. Her labs this time were great. Her CMV, HHV6 were cut more than half and her EBV was down. He says the numbers come down and then the body has to heal and catch up.

    She is more functional than I am. The only difference in she and I is I have mycoplasma p. and she doesn't. Dr. Lerner has always said that is my driving infection.

    Yes, I too, am excited about all the specialists coming together.

    P.S. I saw you on Phoenix Rising and checked out your video again. I had seen it awhile ago and enjoyed looking at it again today. You did a great job!!!
  7. Elisa

    Elisa Member

    Thanks for your upbeat report on Dr. Lerner.

    Slow progress is better than no progess...you're going in the right direction.

    I agree on the mycoplasma - it certainly has really hurt me.

    Do you still have a fever? I am still fevered 2.5 yrs now. I was on azithyromycin 4+ yrs yikes...

    It says alot about Dr Lerner's character when he demonstrates how happy he is for the CFS community. It makes me feel so good to hear doctors wanting to work together - it just so great.

    Thanks so much for posting such great info!

    God Bless,

  8. chrissy12

    chrissy12 New Member

    I believe Dr. Lerner would be willing to help if asked. I do believe he has a piece of the puzzle.

    Also, Dr. Lerner made it sound like it would be awhile before drugs were available. I hope he is wrong about this and they come on sooner than later.

    If anyone hears of him doing a study, please post it here. I agree with you on this one.
  9. chrissy12

    chrissy12 New Member

    My fever has been gone for about a year. It happened when on was on antibiotic IV's. I have to keep remembering that is an area greatly improved.

    I am truly sorry you still have yours. I know it is awful. Dr. Lerner wanted to put me back on azithyromycin and doxy, but I reminded him I got worse on azith.

    The more I know Dr. Lerner, the more impressed I am of him and how brilliant and humble he is!!!! He tirelessly continued this work without too much support and took all of the ridicule from other doctors, yet he believed in what he was doing and kept going. I am amazed at his dedication to helping us.

    He says he has a manuscript being peer reviewed right now. He says there is nothing like it out there. I wonder if he will see the greatness of his work while he is alive. Many artists die and then their work becomes brilliant to the world. I hope he lives to see the day!!!
    [This Message was Edited on 10/23/2009]
  10. onset1990

    onset1990 Member

    Does he accept insurance? I have heard many of them don't, but he is not that far away from me (45 miles). The others are back east.
  11. anncavan

    anncavan Member

    Hi onset 1990. I am a patient of Dr. Lerner's. He does accept insurance. I come in from out of state even, and I have no problem with visits or the tests being covered. Just call the office to confirm your type of insurance. They are fantastic!

    His website has been updated quite a bit recently. Check it out for reserach, articles and contact info. www.treatementcenterforcfs.com

    Good luck, and be well.

  12. misskoji

    misskoji Member

    Accepts Medicare and Blue Cross I believe. You are lucky to be so close to him, and I really hope you can get in to see him. He's simply brilliant.

    FYI---I called the office today. Dr. Lerner will not run any of the current XMRV testing. I didn't ask them to elaborate on why. My guess is that these tests have no specifics...titers, active/dormant infection, only a positive negative result and he's too maticulous that way. (Never a bad thing IMHO)

    Best of luck to you onset 1990. Please let us know if you get set up with Dr. Lerner and about your progress.
  13. chrissy12

    chrissy12 New Member

    anncavan - Thanks for the address for more info on Dr. Lerner. I find it very interesting..

    misskoji- That makes sense about all the numbers. From what I have learned, there are 4 possible ways to test for different things. I am sure Dr. Lerner would want the tests refined before he uses them. Also, he knows he wouldn't treat with anything yet..

    I agree, Dr. Lerner is brilliant!!