Dr. Martin Lerner in MI anyone?

Discussion in 'Fibromyalgia Main Forum' started by Marta608, Jun 19, 2012.

  1. Marta608

    Marta608 Member

    I have scrolled through the Good Doctor thread until I'm cross-eyed. I decided to cut to the chase and ask if anyone has found good help for CFS/ME in the SE part of MI.


  2. spacee

    spacee Member

    LadybugMandy who used to post here when she was seeing Dr. Lerner said
    recently (here) that the antivirals he uses didn't help her much.

    But, you never know. I think he has helped some a good deal.

    Now LBM used Dr. Enlander in New York. FYI

  3. Marta608

    Marta608 Member

    Thank you. She must have moved, right?

    I need a good doc, not just for CFS/ME but in general. My doctor is blaze'. I need someone who will work with me on several issues, and I'd like a woman doctor, if possible, but at this point, quality comes first.

    Onward with hope,
  4. misskoji

    misskoji Member

    I am a former patient of Dr. Lerner. I highly recommend him. However, I know other patients personally, that would not do the same.

    I can answer any questions you may have, from my experience. I'm short on time right now, to share everything. But, I will check back later and see if I can help.


  5. Marta608

    Marta608 Member

    A doctor between Flint and Brighten would be even better but so few doctors are willing to work with CFS/ME, let alone understand it. It becomes a rule/out situation - which I understand - but have been there, done that to no avail with several doctors.

    Dr. Lerner's name came up when I Googled M.E.

    I'd be very interested to know how he helped you and with what. Also, for those who were not as fortunate, do you know why? I feel very strongly that one of the reasons we can't find more help is that doctors and patients have used CFS/ME as a basket dx for so many other things that cause fatigue. M.E. fatigue is like none other! Not only that, but when we realize our actual limitations, depression and anxiety set in.

    I see that many of the symptoms correlate with very low thyroid but mine reads low-normal. Normal for whom?? One of the more adventurous doctors I saw had me take an extra half of Armour Thyroid every other day. That didn't work either. I thought of changing my name to Lab Rat.

    I'll be happy with any information you can share and/or point in me the direction of more help. It's been too long and I'm getting too old to think this is all there is going to be my life.

  6. misskoji

    misskoji Member

    I can so relate with you, with your frustration and desperation. I've been there, and I still struggle with it.

    I live in MN. I researched for a long time for help locally. When I found no ME/CFS competent doctors locally, who would accept my insurance, I came here to read of other's experiences. I decided on Dr. Lerner for a few reasons. The first was because he, himself, has/had this illness. Second was reading personal accounts posted right here on ProHealth.

    So, I began travelling 15 hours one way to see him. In the end, that was why I had to quit seeing him. The travel was expensive, both financially and healthwise.

    If you are able to see him without extensive travel, and have insurance he accepts, or otherwise can afford it, I would encourage you to see him.

    If I remember correctly, my first appointment lasted about 2 hours. It started with Dr. Lerner coming into the waiting room to personally bring me back to his office. He took an extensive history there. Then, I went to a patient room and had several labs drawn, and an EKG. After that, he came into the room and told me his plan and prognosis for me.

    He ordered very extensive diagnostic tests, that no other doctor has even considered. Chest x-rays, CT scans, ect. He always has his patients do a 24 hour holter monitor test, at least once. He believes very strongly that the heart is affected in us, as he found virus in heart biopsies with PWME. He tests for Lyme, autoimmune contidions, and many more.

    I was mostly bedridden when I began seeing him, barely able to care for myself and my son. He found my main issues were chronic, persistent CMV and EBV infections, and slightly high HHV6. He also found what no other doctor did, adult Rheumatic fever.

    My treatment regimen was Valcyte, Valtrex, antibiotics. He also asked me to come stay near his office so I could have a PICC inserted, and have a nurse come to give me IV antibiotics for 6-8 weeks, and have a tonsilectomy. I could not afford to do this, and I really regret it, because I am in a hard struggle trying to find a local doctor to address the Rhuematic Fever, at all.

    He does Rx other antivirals, depending on which viruses you test positive for, but antivirals are his mainstay. One of the issues is that these antivirals are very expensive. My insurance company tried to fight paying for them every single time I went to get a refill. Somehow, Dr. Lerner is able to show the need for them very well, and they were covered.

    Depending on your diagnosis, he will want to see you in his office every month, or up to every 6 weeks. Because of my test results and health, he was adamant that I come in every month.

    My personal experience with antiviral therapy was successful-depending on what one considers as such. I didn't experience a great deal of improvement while on the therapy (a 1 point raise in his energy index scale). After completing the course, though, I did recover enough to get out of bed and participate in my own and son's care, clean, grocery shop, ect. I am nowhere near "healthy", or "cured", but I attribute all of the improvements I have, to him and his care.

    During the therapy, you have to be very careful. You must rest. You need to be aware that stopping the antivirals and restarting them, will lead to resistant viruses that are very hard to combat. He will tell you (or at least he did me) that the therapy is the hardest part, and most recovery will be after you have completed the regimen.

    In my experience, he was a very kind, intelligent doctor. I believe that being ill and sort of ostrasized himself with this illness, it made him more compassionate and work hard to help us. My only critiques would be that he sometimes seems impatient with questions. I advise that if you see him, you read as much material as you can on his website so you can understand that he firmly believes all of our symptoms, and the illness itself, is attributable to these viruses. I did ask a few questions via email, which he or his staff always answered.

    The people I personally know, and by some accounts I've read about, the reasons people do not recommend him are:
    His impatience with questions
    His strong conviction in the viral 'only' theory
    He does not allow you to take supplements while on his therapy.
    (Some say this is because he doesn't want any variables in his research, he says, if I remember correctly, it is because the antivirals are liver toxic)

    He does want you to have a primary care doctor. I explained to him that at the time that I didn't have one because the ones I tried, only recommended shrinks and excersize. He addressed several issues I had, that would normally fall on the shoulders of a primary-pain, rashes, ect. He has an after hours nurse line 24/7. I had to call them a few times, and the doctor would call me back personally to tell me what to do. That is pretty rare.

    He works closely with Beaumont hospitals, which are close to his office, and probably not far from you. I believe Beaumont respects him a great deal, as I was always treated with compassion and my illness and concerns were treated as serious, unlike our experiences with most hospitals and doctors.

    Marta, please just give him a try. There are so few doctors who treat this illness, and are as thorough as him. If I could afford the travel, I would go back to him in a heartbeat. For both myself, and my son.

    I hope I've helped you in some way here. I will check back to see if I can answer any additional questions.

    I wish you all the best,

  7. Marta608

    Marta608 Member

    I appreciate the time and energy you took to reply so thoroughly.

    I applaud you for all the effort it must have taken to get to Dr. Lerner's office and back as long as you did. I'm glad you've improved as much as you have.

    As for me, I have days when I can do more than others. When the bad days hit, I must surrender and rest.

    I couldn't drive myself there since, once the fatigue sets in, I'm done. I only drive locally now and have no one available to drive me further.

    Some days are worse than others because I seem to be having some type of anxiety reaction to nightly Tamazapam. I researched tapering off and found a doctor's site in the UK that recommends using Valium gradually for that. My doctor wouldn't prescribe it. But that's another subject. I'm thinking out loud.

    I suspect he's right about a virus being the base cause of CFS/ME. I began this journey 18 years ago with an EBV which reoccurred once several years later. I had mono in college and thyroiditis later in life. A doctor I was seeing at the time had to close his office because of fatigue. He said he had an EBV and has had several reoccurances. He credits CO-Q10 for keeping him well. I find that easily over-stimulating for me.

    I've read that after so long, it's almost impossible to get totally well. Did he ever suggest that it's too late for some people? Is age a factor? I'm 74 and wonder if a little improvement would be worth the cost and the effort. I know it sounds negative but that's where I am emotionally with all this.

    If I were you I'd tell me to somehow make an appointment and see what he says. His not being good with questions does concern me because I have many of them, as you can see.

    I'll find his website again and do more thinking.

    Thank you for being there.

  8. misskoji

    misskoji Member

    I do highly encourage you to see him, as soon as you can. If you are suffering this much, (and I'm so sorry that you are) I think it is worth the chance to give yourself, and him a shot.

    I think he would also address the issues with your sleep med. He probably would include your sleep issues with your treatment regimen, if you tell him this is a major problem for you. He is aware of our disrupted sleep cycles.

    I too, have read that treatment within the first 5 years of contracting this illness yields more chance of recovery. I am always hesitant to say 'cured', because there are so few of us that ever do fully recover. That being said, Dr. Lerner has/had this illness, and is now able to keep his practice open. He is in his 80's now, I believe. So, I guess if recovery was possible for him in his later years, it is possible. He could have retired a long time ago, but he still treats patients. I think that says a great deal about his character, dedication, and recovery.

    He never said to me that recovery is impossible for anyone. He does mention, on his website or a publication-that it is more of a challenge for those of us who have co-existing conditions/infections.

    I understand your emotions, hesitation, and your frustrations. It makes me so sad and so angry to know that there are millions of us struggling to regain our lives, with so little resources-left to our own research.

    I can say that I've only ever experienced his impatience with questions once. That day I was fogged, and asked several in a row. I probably repeated them. He wasn't mean, he was NEVER mean to me-I just could sense his frustration. You can ask him questions, Marta. Please do. Even if it's just one or two each visit. If you forget something, or otherwise, send them an email. He or his staff will answer you.

    Whatever you decide, I wish you all the best and hope you find some relief.


  9. misskoji

    misskoji Member

    You mentioned not being able to drive that far.

    I'm not sure what type of insurance plan you have, but a lot of them will cover transportation for you. I would call your insurer, or look into your plan.

    If that doesn't work out, perhaps call Dr. Lerner's office, and ask his staff if they know of transportation resources.
  10. Marta608

    Marta608 Member

    I never thought that my insurance might pay for transportation! I got the driving directions from Mapquest. His office is about 48 minutes from me, 80% freeway. I'd be whipped just driving there!

    I must have naps, so I'd need an early appointment. Of course, like many of us, my family doesn't understand, so it would work better for a paid stranger to take me. Otherwise someone would expect lunch!

    Listen to me dither....... It comes with the territory for me.

    Right now I'm trying to get my long-haired cat shaved at a vet's and they're giving me grief because she's not having surgery, just a check up with no anesthesia. I took her in from outside three winters ago and she's a very scardy cat. If I get her in a carrier once a year, I'm doing well. That's next week, I think. I come next.

    Wouldn't it be wonderful if...........................?

    Hugs back to you,

  11. chrissy12

    chrissy12 New Member

    Hi Marta,

    I have been with Dr. Lerner for 4 1/2 years and have had improvement. No where cured, but moved up his scale.

    Everything that misskoji wrote is what I would write, so I won't rewrite it. She is very accurate in her description of everything.

    I live in Central Ohio about 4 hour drive one way and have been traveling there since Dec., 2007. If I lived 48 miles away, I wouldn't hesitate to see him. You are very lucky that you are that close.

    It was extremely hard to travel there every 6 weeks, physically especially. I would no sooner recover from the trip and it would be time to take another one. I am so glad I did it.... I go with a friend and we hired a driver to drive us.

    Misskoji is right about the asking of questions. I learned just to have 3-4 that were most important and just casually ask them during the appt. He really is very kind, but can appear impatient with a lot of questions. He gets this disease and that is worth a lot.

    I wish you luck on your decision and please know prayers will be sent your way as you make your decision.
  12. Marta608

    Marta608 Member

    Oh, thank you, Chrissy. Only "one of us" can know what it means to have someone(s) in our corner. I will do my best to see him. I may have a ride lined up, so first the cat! then my turn. Besides, who knows how far out the appointment date will be.

    I have already had a lot of the tests he does, so that might help, as well, if I can get copies for him. The Holter monitor results were interesting. No recognizable heart problems BUT a little "glitch" they couldn't explain.

    Fingers crossed. I'll keep you both posted. Thanks again!
  13. Forebearance

    Forebearance Member

    Hi Marta,

    What about Dr. Mary Beth Short Ray? She may be going by Dr. Mary Short by now. I think she's practicing in a northern suburb of Detroit right now. She has heard of CFS and knows quite a bit about it, and is also very nice.

  14. Marta608

    Marta608 Member

    I've never heard of her, but I'll check into it.

  15. ladybugmandy

    ladybugmandy Member

    Gosh he must be 90 by now!!

    I would only go to him IF you have high antibodies to CMV, HHV6, or EBV.

    There isn't really any great treatment out there, no matter whom you go to. If you want to try something other than antivirals, Lerner will not do it.

  16. Marta608

    Marta608 Member

    You're right, he's far from a young man. I tried to watch the videos on his website and finally figured out it was for doctors! Good thing, because I got none of it and had trouble hearing him.

    All I know is that, the few times I've had antibiotics, I've felt better. He probably doesn't take Medicare anyway. I'm going to call his office next week and ask. I just hate to give up.

    Thanks for your thoughts.

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