I'm jumping on the Dr. Lerner wagon!

Discussion in 'Fibromyalgia Main Forum' started by misskoji, Oct 21, 2008.

  1. misskoji

    misskoji Member

    I really wanted to thank all of you that have posted and shared your stories about Dr. Lerner. I'm all set up for a first appointment with him mid November and I'm very hopeful about it.

    I have both FMS and CFS and have been overwhelmed by what treatment to try first, last, or at all. So after much research and reading your generous thoughts and stories, I've decided to give his treatment a try.

    I'm going to research more posts here, but in the meantime, I'm wondering if any of his past/present patients can clue me in on a few things?

    1)Where to stay near his office?
    2)Does he treat CFS overall or just the infectious agents? (EG pain and fatigue)
    3)Do any of you also have FMS and find that his treatments help ease this as well?

    Again, I can't thank you enough for your personal thoughts and stories with Dr. Lerner. Without all of you, I wouldn't be trying anything at all.

  2. ladybugmandy

    ladybugmandy Member

    hello. i am very glad you have decided to try dr. lerner.

    since pain is not an issue for me, i haven't talked to him about treating pain. his main focus would be infectious agents.

    i have only spent one night in MI and that was for the 48-hr. Holter (i usually return the same day)....there are many other people on the board who can help you with that.

    just remember: the name of the game is PATIENCE!

    good luck!

    ps..how long have you been sick? how did it start?
  3. SpecialK82

    SpecialK82 New Member

    Yay!! Congratulations on taking this next step in your fight.

    He is concentrated only on the infectious agents. He does however give you a thorough physical so he may treat any other side issues that come up. For example, he noticed my thyroid was low and gave me a perscription to increase my dose.

    I try not to discuss any issues with him that one of my regular doctor's can address. You'll find out quickly that you don't have a lot of time for asking questions, so I focus only on the infectious portion to make sure that's covered.

    If you find yourself frustrated with more questions than answers, the best way to research is his website, cfsviraltreatment.com, and this board.

    What price range are you looking for in a hotel? The best deal that I have heard is Hawthorn Suites (I think it's about $79) empty2void (Kelly) stays here when she's in town, so maybe she will jump in here.

    I have stayed in a few hotels that were around $120ish (unfortunately Hawthorn does not have King size beds and I was traveling with my husband and needed the elbow room). Some places offer a hot breakfast and others do not. I can't think of the names off hand but I will track them down if you are interested.

    Good luck in starting your journey, that's very exciting!

    I will be looking forward to reading about your progress.

    Hugs, Kristina
  4. ladybugmandy

    ladybugmandy Member

    sorry! i meant to type "24 hr Holter" not 48....

    there doesnt seem to be a way to edit posts on this new site...
  5. misskoji

    misskoji Member

    Hi Sue and Specialk82.

    I've read your posts about Dr. Lerner and ultimately you helped motivate me to give it a try, thanks for sharing your stories with all of us.

    Sue, I updated my profile a little to reflect my journey. I'm also sorry to read that you are struggling so much during your treatment. I hope your symptoms ease up and you can recover more peacefully.
    May I ask what is the 48 hour holter?

    Kristina, strange we're exchanging notes on various things huh? I'm going to ask Dr. Lerner (hopefully) to test for Entovirus and the other one too, can't remember the name of it now, related to hand foot and mouth. I wonder if you can ask too?

    I'll try to hold my excitement and not bombard the poor doctor with so many questions, but it will be hard. :) Thanks for the tip though. I'm just going to let him do what he does best and trust in him.

    I guess I'm not looking to spend over 150. I don't need something real foofy, but I like to be in a comfortable, clean, and relatively quiet place. I'll be travelling alone so I suppose I could go without the king bed for the night...sigh. j/k (I sound spoiled right? lol) I'll look into the Hawthorn Suites too, thanks.

    I'll be looking forward to hearing about all of your journies as well and sincerely hope it goes smooth and without as much suffering as possible for all of us.


  6. ladybugmandy

    ladybugmandy Member


    your chances for recovery are very good! you have not had the diseases very long.

    second....i am not sure if dr. lerner will test for enterovirus (i don't think he will). if you have many digestive problems, perhaps you can test for enterovirus through another doctor.

    i think that dr. lerner believes that if the herpes viruses are active in your body, these are the main causes of the disease...and if there are other co-infections, treating the "main" infection will enable your body to take care of the others on its own.

    a Holter is a portable device they will strap to your body for 24 hrs. they will attach electrodes to your chest and measure the electrical signals from your heart.

    are you flying to michigan?

    good luck!
  7. SpecialK82

    SpecialK82 New Member

    We stayed at the Hilton Garden Inn in Southfield last time we went, it was about $120 with tax for a King with a AAA discount. It's a new hotel, nicely decorated, clean, bed was comfy, they do not offer a free breakfast, but we enjoyed it and would stay there again.

    I was told the Dr. Lerner does not test for Entrovirus. I told him about the hand, foot, mouth and he didn't think the coxsackie virus had anything to do with my problems now. He basicially just blew it off when I told him, it will be interesting to see if he tells you any differently.

    I am going to see him again this Friday but will not be spending the night this time, we will try to do all our traveling in one day.

    You are very wise for getting aggressive with this treatment so early in you illness, like Sue said, you should have an excellent chance at recovery!

  8. misskoji

    misskoji Member

    Thanks so much for the encouragement. You guys are awesome. I guess I didn't mention that I suspect I had a less severe presentation of CFS ever since I had mono as a teen. But that's neither here or there, I'm still hopefull.


    It's too bad Dr. Lerner won't test for these other stealth viruses. I guess I can understand his theory about the body clearing of co infections with his protocol though. I do have digestive problems, thanks so much for the tip. I think I will take your advice and seek out testing through another Dr. for this and a few other tests I have on my "to do list".

    Thanks for telling me about the Holter. I hadn't had time to look it up. I do recall reading some material about the effects on the heart with CFS on his site. But, even though I took a medical terminology course a while back, I find his publications a little hard to comprehend.

    I will be flying back and forth. Even though it isn't too horribly far from me, I just can't handle long drive trips anymore. One bad thing about flying is the 6 hour long wait for connecting flights stopping in Chicago. It's the only way the tickets are affordable though.

    Mind if I ask you what your Holter showed? Has the Dr. given you a time frame to go by as to when he expects you to feel better? Or maybe that's not how it works...I suppose it's different for everyone?


    Thanks, the Hilton sounds great. In fact it sounds real good right now. :)

    As I replied to Sue, it's a little dissapointing that he won't test for these other viruses. If I don't get tested for it before I see him I will see if I can ask him about this, I guess there is no harm in asking.

    I hope your appointment goes well on Friday. And I hope sometime our paths will cross there and I can get to meet both of you.


    [This Message was Edited on 10/22/2008]
  9. ladybugmandy

    ladybugmandy Member


    if you want more information about enterovirus testing, please email kristin loomis (kristin_loomis@hhv-6foundation.org). you will need to get an upper endoscopy and send the slides to a special lab.

    do you buy your plane tickets through expedia, orbitz, travelocity, or one of the online sites? if so, you can get great deals on hotels if you buy both together.

    when i spent a night in MI, i stayed at the Westin in Southfield because i got such a good deal with the plane ticket.

    i can no longer afford to fly so i now take the train and return the same day.

  10. kitteejo

    kitteejo Member

    I have my first appointment with him tomorrow. I live about an hour away from him so I guess I'm pretty lucky for that. I'll write back and let you know how it went.

    I'm a little nervous about it because I don't know what he'll do with me.

    For those that have seen him I have a few questions:

    I've had three stress tests, should I bring the results? I don't want to do that again.

    I've been tested for Lyme, metals, thyroid etc.(all negative) Should I bring those test results?

    What else will he want to test me for? He does not use Quest and that is the only lab my insurance will allow me to go to. what lab does he use?

    I've had a halter before but don't have the results and it's been quite a few years so I would guess he'll want to repeat that. Hope my insurance will pay for it. Dr. Lerner is out of network for me so I have to pay a higher co-pay.

    I was also considering having my husband in the room so I don't miss anything, good idea?

    Any tips would be great.

    Sorry, I have so many questions.


  11. misskoji

    misskoji Member

    Hi. I'm glad to talk with other Dr. Lerner patients.

    I was told the first visit is a two hour long one. He does a complete physical on you and orders tests that he sees fit. I asked if I should bring in my medical records, tests, ect. when I go. They told me no, even I did bring the testing results, that he would want to repeat them. I am thinking he interprets the tests on a more scrutionous level than our normal doctors would, which is a GREAT thing.

    I really don't know what all he tests for yet other than the Herpes family of viruses...EVB, HHV6, ect. And I suppose this would vary from patient to patient also.

    I think it's a great idea to have hubby in the room. I find Dr. apts. overwhelming at times and can't remember half of what we talked about upon leaving. This way your hubby can fill you in in case you forget or missed anything.

    Good luck with your appointment. Please let us know how it goes. Then maybe you can tell us what he tests you for so us newcomers can know a little more of what to expect? Have a safe trip.

  12. MIgirl2008

    MIgirl2008 New Member

    Hi kitteejo

    Dr Lerner uses LabCorp, and I also have to pay more out of pocket.
    I think it is a great idea to bring your hubby along if he can go, for your support, and also from what I have experienced with Dr. L, he really does like to see the spouse there on occassion.

    Just curious, where do you live in Michigan? I am about an hour south of his office, and feel very fortunate that I am so close. (I don't think I could make such a long journey as others on here do....very brave and strong people!!!)I am not that tough! LOL

    Good Luck tomorrow with your appointment, and let us know how it goes! :eek:)
  13. ladybugmandy

    ladybugmandy Member

    just a reminder...if you are paying out of pocket, when you receive your bill from labcorp, call labcorp and tell them you are paying out of pocket. they will deduct 15% i think.

    best of luck:)
  14. kitteejo

    kitteejo Member

    MIgirl, I live about an hour West of him.

    I don't think my hubby could sit there for two hours, maybe I won't have him in the room, he'd go crazy.

    I'll have to pay cash for my labs. Darn! Thanks for the tip Sue.

    Will write back tomorrow and let everyone know how it went.



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