Lerner visit 1

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Aug 1, 2008.

  1. SpecialK82

    SpecialK82 New Member

    I just went to my first visit with Dr. Lerner today. I was sooo excited to see a doctor that understands our problems. We drove from Cincinnati yesterday and spent the night in a hotel so that the traveling wouldn't be so exhausting.

    He started the visit by having me and my husband back to his office to review my history. I told him that I was diagnosed with FM but that I have symptoms of FM and CFS so that I'm not sure which I have. He said that he thinks that they are both the same thing. He was very pleasant to talk with and seemed to take a genuine interest in my case.

    He said that he has had 124 patients with these symptoms and 72% have had a remarkable improvement. I was very happy to hear this - I did not ask him the timeframe for these improvement however. (I was very careful not to ask many questions after reading some of the posts on this board). He definitely seems to have his own system of doing things and I don't think he wants to be pulled off course with lots of questions.

    He told me not to try to exercise anymore and not to drink any alcohol (I told him that I used to occasionally have a glass of wine with dinner but in the last 2 years have not had any alcohol as it makes me feel worse).

    Next he gave me to the nurse who did an EKG, read my blood pressure and took about 5 vials of blood. She then did a chest X-ray and asked for a urine specimen.

    Dr. Lerner then came back to the examing room and told me that my EKG looked good. I'm not sure if that means that I don't have the inverse T waves that he looks for, or if he looks for those on the holter monitor....

    He asked what kind of soap that I used, to which I replied "Dove" and he suggested that I switch to Dial anti-bacterial soap. I'm not exactly sure why. If anyone has any ideas I'd like to hear them. I know he's looking for bacterial and viral infections but I didn't think the type of soap I'm using would make a difference??

    He then did a physical exam for a few moments, listened to my heart, etc.

    He instilled some hope in me when he said that they would figure out what was going on with me. He said that they have been working on this for 20 years and that they know exactly what they are doing.

    Again he was very nice throughout the process, definitely has some old world charm about him. Everyone in the office seemed very efficient in getting my out and on my way. I did have to schedule another visit at the end of August for an echo and a holter moniter, and then I see him to talk about results of all these tests in early Sept.

    I am very tired after driving back after the appt, unfortunately we ran into traffic delays both going up and coming back so I am sore from all that sitting in the car! Ouch!!

    Does anyone have any tricks for a more comfortable ride when traveling? I was thinking about those "beads" that you see taxi drivers sit on - they look uncomfortable but maybe they really help the circulation, etc.

    So that's the visit in a nutshell! I'm excited to find out about my test results and get started on the program. I'm also concerned about how draining it will be to travel like this repeatedly but will try to just take one day at a time. I feeled blessed that my husband could drive me and I just had to sit there and nap off and on.

    Also it's so nice to have this board and people that care!

    I'll continue to update on the visits if you all are interested. You are all in my prayers.

    Hugs, Kristina

  2. sascha

    sascha Member

    on testing and results and treatment suggestions. i'll watch for your posts. thanks, sascha
  3. znewby

    znewby Member

    If Dr. Lerner suggested Dial soap, then that is going on my shopping list. Appreciate reading your post.
  4. chrissy12

    chrissy12 New Member

    I am so glad your appointment went well. The more I get to know Dr. Lerner, the warmer and more charming he gets. It will take a few visits to get started and then you will be on your way.

    I just saw him this Thursday. He told me my case is uniquely treatable. I have all of it.. He still offers me hope, but it is going slowly for me.

    I have a friend who started with him this May. She has already been moved out to seeing him every 6 weeks. He says she should see improvement by this December. She has been sick for about 15 years. She is very excited!!!

    I know the traveling can become overwhelming. When my parents take me, I take a pillow and sit and lay down in the back seat. That does help. I hope all goes well for you and look forward to hearing how you are doing.

    Take care, Cindy
  5. jprr99

    jprr99 New Member

    I know this is a personal question but I was curious what his fees are and if he takes insurance? Thanks. Good luck!!--

  6. SpecialK82

    SpecialK82 New Member

    As I was talking to my DH today, we both figured out that when Dr. Lerner suggested I use Dial soap, I believe he was talking about some acne issues that I had.

    After thinking about the context of the conversation, we both now think that is what he was referring to and not the overall viral/bacterial issue.

    So sorry for the confusion, I don't want to lead anyone astray!
  7. SpecialK82

    SpecialK82 New Member

    anchorholds - so sorry to hear that you are too sick to travel, as I understand from reading other posts about Dr. Lerner I believe he is willing to share his protocal with your doctor so that you can get treatment locally. The trick will be to convince your doctor to accept the protocal (I don't think any of my docs would go along with it). If you do talk to your doctor, I would print off the information from his website and bring as much data with you as you can find.

    You may still need to see Dr. Lerner once or twice for the initial testing and diagnosis - I'm hoping someone else will chime in here if they know how this would work.

    Also the holter is different in his office than the standard (the equipment is calibrated differently), I asked that question when I was there. I'm not sure if the echo is also different but I would assume so. They did tell me that it is best with the Holter to show some activity while wearing it, like 15 minutes. Don't know if he does anything with heavy metals??

    Good Luck to you - if you see that this treatment is really helping people on this board down the road, maybe you would be able to find a way to get to his office?

    jprr99 - I haven't seen his fees yet, he will send it through to insurance first although my company is not in network and I know I will be paying for a majority of it myself. The only insurance he takes is Medicare and Traditional Blue Cross/Blue Sheild.

    There are some other posts on the board, if you search under Lerner, that do discuss the fees more specifically.

    I will post my billing when I see it.

    [This Message was Edited on 08/02/2008]
    [This Message was Edited on 08/02/2008]
  8. SpecialK82

    SpecialK82 New Member

    So glad that he said your case was treatable - isn't that great to hear? Has he given you a timeframe for when you can expect to see improvement? I wonder what's the longest that he has had someone on AV's or antibiotics?

    Your friend sounds like she is doing well, what issues is she being treated for? Was it just one thing?

    Even though we know this treatment is experimental at least we are trying something right? Are you able to keep up your same level of activity while on the treatment as you had before, or are side effects draining you?

    Thanks for your encouragement, Kristina

  9. SpecialK82

    SpecialK82 New Member

    We did stay in Troy, the hotel was nice but very pricey. We came later in the evening about 9:00 - and had to go through part of downtown Detroit (yikes) because 75 was closed down. So when we left the next day we went out through Southfield,it looks like a nice area with a lot of hotels - I didn't get a chance to find Hawthorn though. But we will definitely stay in Southfield next time!

    Kelly you said that your EKG was normal but the Echo and Holter was not - did he find the inverse T waves on you (if you don't mind me asking).

    I'm so impressed that you're just flying all around. That's sounds like alot of energy to get through the airports, etc. Since you are flying, do you go by yourself? I know it would really get expensive to have a companion when traveling this way.

    I have my echo and my holter put on Aug 25, and then I return the holter on Aug 26 between 8:00 - 10:00 AM. What time is your appt.?


  10. sadie101

    sadie101 New Member

    I live in michigan and have been thinking about seeing Dr.Lerner myself. I just wanted to tell you that my mom was told by her doctor to use dial anti bacterial soap when she takes a bath or a shower, she has a trauma wound on her foot.she had polio and has very thin skin on her feet and ankles. the doctor told her to bath her hole body and her foot as well, her foot is finally starting to heal after she started using the dial soap. the doctor did say that well water can have bacteria in it that can make wounds worse. just thought I would let you know the info that I had learned. Take care

    love Sadie
  11. SpecialK82

    SpecialK82 New Member

    Thanks for the info on Dial soap, that's very interesting.

    I just read your bio and it sounds like you have been through alot! Dr. Lerner may be able to help sort through what all you have going on. At least he does different testing then the standards, and I'm hoping it will give me more knowledge than I had before.

    That's nice you live in MI so hopefully it wouldn't be too long of a drive for you. Please let us know if you decide to go - I'd love to hear about it.

    Take care, Kristina
  12. Interesting, you said "He told me not to try to exercise anymore " did he say why? I have been doing pool therapy and it still kills me. Also interesting about the dial soap. I think I may use it too, I use Oil of Olay, but hubby uses Dial.
    Where is this dr. located and did he give you any meds?

    does he treat cfs AND fibro?
  13. SpecialK82

    SpecialK82 New Member

    He is located in Michigan, he has a website if you'd like to check it out


    He believes that FM and CFS are the same thing and many times are triggered by a virus or bacterial infection like Epstein Barr, CMV or HHV-6. He does extensive testing to determine if you have any of these (or others). He has seen that people with CFS or one of these infections usually have some weakening in their heart that can be seen with a holter monitor (inverse T waves). He suggests this may be why exercise is so intolerable for us and that we actually shouldn't exercise until we have had treatment and the T waves look normal again.

    He concentrates on treating the infection with antivirals and/or antibiotics. I do not have any meds yet as I still have more testing to be done.

    Hope this helps.

  14. stschn

    stschn New Member

    Thank so much for the information about your appointment with Dr. Lerner. I too think he has most of the answers and I have the insurance that he accepts but I live in California. My question is about exercise. Many of us now know that aerobic is bad and accounding to Dr. Cheney it actually kills the mitochondria causing permanent damage. I was told for years by the medical community that I needed to exercise (what ever happened to "first do no harm"?) O.K. so they didn't know any better. Oops of track-but we are now told that anaerobic is good for us. Dr. Montoya has put me in touch with exercise lab to design an anaerobic program because my body is so weak. This program is used by Doctors Peterson, Lapp, and now Doctor Montoya but I sure could not have been doing this during my Valcyte treatment. I just thought that if you could carefully slip in a question that might be a good one. I'm sure you have enough problems without haveing a body so deconditioned that you are unable to walk.

    [This Message was Edited on 08/04/2008]
  15. SpecialK82

    SpecialK82 New Member

    Yes I'm definitely excited about seeing Dr. Lerner, thank you so much for your support.

    Joyce - you bring up an interesting question about exercise, and I was just wondering the same thing. I had been doing some physical therapy for the past few months to get a little more strength in my legs and arms but I did not ask him if I could continue with these exercises. I think they are OK since my heart rate does not increase much when I do them. I also don't feel too bad afterwards.

    On the flip side, when I try to take a walk for longer than 10 minutes I start feeling badly and need time to recover. I will ask him that question if he seems receptive when I see him next. I hope you can get a chance to see him if you are able to travel - that's terrific that he takes your insurance!!

    Jam338 - I agree that sharing information is so key for us. Maybe we all have little pieces of the puzzle and if we continue to pull enough information together we could all be in much better place with this DD. I'm impressed you have the energy to review DVD's from the conferences. I look forward to hearing what you discover. Thank you to you and to all you other wonderful people that have the energy and brain power to research for us and share your findings!

  16. ladybugmandy

    ladybugmandy Member

    thank you for sharing information about your visit! i am excited for you!

    dr. lerner keeps reminding me to use dial soap too. i had a skin infection in the past which he thought was staph but turned out to be some other bacteria.

    please keep us posted with details....eveyone's visit seems to contain some new, valuable nuggets of info.

    have you considered taking the train to detroit? the train can be quite comfortable.

  17. SpecialK82

    SpecialK82 New Member

    I'll definitely keep you posted!

    my DH had looked at trains but said it was a 15 hour trip (as opposed to about 4.5 in the car). On a train at least you could get up and move around. I would definitely think about it especially if there was no one that could go with me in a car.

    So was Dr. Lerner telling you to use Dial on your entire body or just where the infection was? I was unclear as to what he was referring to and was nervous to throw out questions at him.

    Oh, I have another question for you. Does Dr. Lerner ever do appts by phone? After I have my echo and halter done, I'm supposed to go up the following week for the diagnosis. Is it possible to do that visit on the phone??[This Message was Edited on 08/05/2008]
  18. ladybugmandy

    ladybugmandy Member

    15 hours??? wow! then i would definitely take the car!

    may i ask where you live again?

    dr. lerner told me to use dial soap on my entire body (i still use ivory on my face though...i have acne prone skin).
  19. SpecialK82

    SpecialK82 New Member

    I live in Cincinnati(Ohio) - for some reason the train goes to Detroit by way of Chicago according to DH. lol

    I have acne prone skin as well and he asked what kind of soap I was using and I said Proactiv for my face and Dove for my body and he said to switch to Dial anti-bacterial and then I can use whatever else I wanted to use after that.

    So I wasn't sure if he was addressing the acne or if he just wanted me to use Dial in general. My DH thought that he was referring to the acne. It's funny about that too because I have never had a dermatologist recommend Dial, or have I ever read anything that recommended Dial anti-bacterial for acne. However one cause of acne is bacteria so it would seem to make sense....
    [This Message was Edited on 08/05/2008]
    [This Message was Edited on 08/05/2008]
  20. moreinfoplease

    moreinfoplease New Member

    "Dr. Montoya has put me in touch with exercise lab to design an anaerobic program because my body is so weak. This program is used by Doctors Peterson, Lapp, and now Doctor Montoya"

    Could you share more about this, either here or in separate post? I would really appreciate it (ie how did ex lab work, did insurance cover it, what kind of plan did they put together for you). Thanks so much.