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Dr. Lerner patient update..

Discussion in 'ME/CFS Doctors' started by KC22, Sep 6, 2009.

  1. KC22

    KC22 Senior Member

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    I just heard from a reliable source that one of the patients I know that sees Dr. Lerner has improved greatly. She is about 20 years old and has been sick for about 2 years. She spent the previous year at the Cleveland Clinic with no significant results.

    She started with Dr. Lerner around May. She saw him last week and she has been moved to a 7, I believe from around 4.5. She thinks she is completely well, but her mom says she still sees things that she would like to see improve. Her mom is very excited about her results.

    On another side note, I know 2 other women who see Dr. Lerner, all in their 50's. Our progress has been much slower, myself from a 2 to 4 and my friend who I go with to MI has moved from a 3 to 5, over 1 1/2 years. I don't know where we will plateau. I have heard from other people, Cort being one, that some people only move so far and then stop. We are all hoping for more.

    Interestingly enough, Dr. Lerner told me last week that he and Dr. Montoya are working together to publish a paper on their mutual research results. He is gathering his data on Group B. Group A are people with HHV6, CMV, EBV, viruses only. Group B: viruses and other infection like lyme, mycoplasma, etc.

    He told me that in his research he found that older, I believe women, do not respond as well. I asked how old is "older" as I am in my 50's. He didn't give me a definitive answer. It is interesting that the young woman responded well and the 3 of us are moving much slower.

    Before I started with Dr. Lerner, I was with an alternative doctor. He helped me improve some; accupuncture, Vit. C Iv's, neural therapy and some prolo. I still see him occasionally, actually this Tues. and I believe it is the reason I have been able to do Dr. Lerner's protocol.

    I know there is much talk about alternative vs. scientific. I am one of those who believes in whatever works, try it.

    I just thought I would share this information.
  2. kolowesi

    kolowesi Senior Member

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    KC22 treatment for us oldies

    Hi, KC,

    Thanks for the update. I'm glad you have made some improvement at least.

    I was able to watch a little of the "Invest in ME" conference, and one of the speakers was Dr. Garth Nicolson. To oversimplify, the degree of illness corresponds to the number of secondary infections.

    We tend to collect them as we are sick for longer and longer. So that's another factor, one I believe is at least as important as age (but maybe I believe that cause I'm in my 50's:p)

    I first had something unknown, probably Lyme as I had swollen finger joints and low grade fevers. After a few months, I added reactive EBV and HHV-6.

    Next I found out I had mercury toxicity. Then mycoplasma. Then CMV titers shot way up and I started having heart symptoms.

    Next, it was "mild" lupus. Enterovirus was found (it could have been there all along). Finally, Lyme starts to show up.

    Dr. Lerner only got one band for Lyme and did not catch mycoplasma. I've had a positive IgM for m. pneumoniae, and I believe there are many false negatives in the testing.

    As for Lyme tests, let's not go there. I did have two bands since I moved to a new doctor though and he believes I have Lyme.

    So I'm postulating that Dr. L's tests did not find my bacterial infections, but that I did have them. He tried to treat my chronic sinusitis, but stopped after a couple of months of antibiotics (it improved a bit).

    Once he cut back my dose of valcyte, I decided to just go off altogether.

    I actually got stronger this year, doing treatment for Lyme plus vitamin C iv's. Now I am worse again, don't know whether it's physical therapy PEM or new B vitamin doses or what.

    Anyway, I'm so happy for the young woman who got better so fast. That is wonderful to hear and I didn't mean to take away from that.

    I know you've moved mountains in your treatment, and I hope you continue to get slowly better. Another thing about being older: some of us have accumulated toxins and have a hard time getting rid of them.

    And I'm one believes toxins (including mold toxins) will keep our immune systems from recovering. Thus I'm trying to help out my detox pathways and avoid further poisoning.

    Sorry for the brain dump. Good to hear from you!

    Kelly
  3. KC22

    KC22 Senior Member

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    Hi Kelly..

    It's good hearing from you again. I am glad you were able to find the Lyme and mycoplasma. If we don't find all of the infections, then just valcyte or valtrex won't work.

    Did you treat for the mycoplasma p.? I know Dr. L uses antibiotics for lyme, maybe that wil help your mycoplasma p.

    Your idea of our age and collection of more toxins may be on target. We had our house done over for mold when I went to MI last year. It does seem a lot better.

    What do you do to help with the mold toxins? Is there any dieoff? Oh, no...

    It is nice hearing from you. Take care, Cindy
  4. Cort

    Cort Phoenix Rising Founder

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    I think its all part of big learning curve that ME/CFS doctors are part of. Tying down treatment protocols to specific subsets of patients is obviously key and its great to hear physicians like Montoya and Lerner are working together and sharing their knowledge. Wouldn't a conference on Treatment with all these different practitioners - where they could share what works in what kinds of patients- just be fantastic?

    At some point, if you get enough data, you should be able to identify treatment responsive patients and their therapies. There's only so many tests you can give after all.

    Another question is just how many patients have these fantastic results? 5 percent? 10 percent? 25%? Do they tend to be young? Dr. Cheney thinks so but Dr. Lapp says not necessarily. Dr. Klimas says we know we can get some patients well but we're really sure why!
  5. Tony

    Tony Still working on it all..

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    I heard from a Cheney patient that there is a group of researchers and doctors who are in touch, maybe meeting at least once per year away from the spotlights. Cheney and De Meirleir are two I believe to be part of this group.

    It would make sense that people who are very involved like Peterson, Mikovits, Klimas, Lerner, Nicholson, Chia etc would be a part of it and share informally.
  6. Aftermath

    Aftermath Guest

    When I participated in the Georgetown proteomics study, I was told by the researchers that they had actually seen a few cases of remission--where the illness appeared to burn itself out. All involved women in their 50s/60s. So never lose hope.
  7. KC22

    KC22 Senior Member

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    Cort - I think your idea is great. It would be wonderful to see a Treatment session with all the great doctors sharing results of treatment and who gets better and what percent of them do...

    Tony- I will check out the sight. Thanks....

    Aftermath - Thanks for the hopeful thoughts. I would love to see this go into remission anyway possible.
  8. hvs

    hvs Senior Member

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    antibiotics and Lyme

    It's probably worth repeating again and again that Lyme is extremely difficult to diagnose. A few positive indications does not put one over the threshold of a diagnosis. No matter what doctor claims to see it, it is always good to get a second opinion. Really. The blood tests are easy and it will only cost you a little more time.

    Why do I post this here? Because I don't want folks to waste their time on months of hardcore antibiotics if it's not necessary.

    And yes, I am speaking from the bad experience of having received a false Lyme diagnosis.
  9. kolowesi

    kolowesi Senior Member

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    hvs more on Lyme

    I was told at the Beaumont Royal Oak Hosp that Dr. Lerner was one of the few local docs that treated Lyme patients when Lyme first was found in the area.

    So I'll agree, he might have been right to go by a Quest test. I'm positive on Igenex, but could have gotten it since I saw him, even. It's widespread in Texas.

    I think I will look for a Lyme thread and ask you more over there, I'd really like to hear how you know yours was a false diagnosis. Thx,

    Kelly
  10. mpsych

    mpsych Guest

    Another Lerner Update

    mpsych

    Hi, I have been seeing Dr Lerner fro 8 months am on Valtrex, and went from a 2 to a 4 in 6months. I then overdid it one night and it seemed to totally stop working for 2 months until the last week or so I seem a little better. I am 63, sick for 15 years. I live in Chicago and would love to share rides with someone. My husband can,t always get away and I am unable to drive that far.

    Mary Pat
  11. KC22

    KC22 Senior Member

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    mpsych..

    Glad to hear your news. You moved from a 2 to a 4 in 6-8 months. That is wonderful!! I did the same thing you did, I was moving to 4 1/2 and then got a little busy this summer and then crashed.

    Dr. Lerner keeps telling me that everytime we overdo it, we not only stop the healing process, but reverse it. I felt like I did that this summer.

    I decided to stay low key and moved myself back to a 4.

    Glad to hear you are having some success!!!!:)
  12. mpsych

    mpsych Guest

    To KC22 Thanks for your reply. Hopefully I"ll get back there too. MP
  13. Cort

    Cort Phoenix Rising Founder

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    Dr. Lerner told me the same thing; its absolutely critical that patients not overdo. I think he stresses that more than most doctors - good for him! I've seen doctors that didn't even mention that fact.
  14. anncavan

    anncavan

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    I am a patient of Dr. Lerner's. Have had CFS symptoms since Dec '07, but didn't find Dr. Lerner until Oct '08. Immediately he began treating my CFS (HHV6 & EBV). Since then he tested me routinely for Lyme (LabCorp). I came up positive only this past Feb '10. He's extremly literate in both CFS and Lyme. However is cautious to treat Lyme without a positive blood test. I just feel so lucky he knew enough to keep testing. Since then I've tested Igenex as well, with similar results. Treatment has only started, so no feedback yet. But lots of optimism! :)

    I'd like to second Cort's comment. Dr. Lerner is extremely against anyone with CFS/Lyme to begin physical activity until they are an 8 on his energy index point score system. (it's on his website www.treatmentcenterforcfs.com) He believes that these viruses have infected the heart, and any exertion causes further damage until the heart has had time to heal. You'll know it's healed when you're strong enough to be an 8 on the scale and live a routinely "normal" life style.

    And to the comments regarding recovery and age. He has mentioned I'm lucky to be treated at 32. Hopefully I'll have a quicker journey. However I know other patients that are in their 50's/60's who are back to 7's and 8's. It just took time and low but steady progress.
  15. ukme

    ukme Senior Member

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    I think the jump between 4 & 5 in Dr lerner's Energy Index is too big. Out of bed for 4-6 hours a day -> 40 hours work a week.
  16. bee33

    bee33

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    I agree. I find that index absurd.

    Items 2, 3, and 4 make no distiction between sitting and walking! I can sit in a comfortable chair for six hours, but I would find it very difficult to walk for even 30 minutes, and certainly couldn't walk 30 minutes every day. Yet according to that scale I am at number 4, because I can sit for six hours (though I couldn't sit in a kitchen chair, it would have to be a comfy armchair with my legs up).

    Next step is a full time job? The last time I had a job I was working 8 hours a week as a cashier at a retail store, where I could sit down, and I had to quit because I couldn't handle it. That was 14 years ago, and I am much worse now.

    I know Dr. Lerner is considered one of the good guys, but that scale alone would absolutely stop me from considering going to see him.
  17. hvs

    hvs Senior Member

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    Best of luck, ann. Remember, there are many of us out here who have been put into remission with antivirals.
  18. SaraM

    SaraM Senior Member

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    Ann, regarding EBV and HHV6, were you IgM postivie or Dr.lerner is treating you just based on a high IgG titre?
  19. anncavan

    anncavan

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    Hi ukme & bee33 - I've been using EIPS with Dr. Lerner, so happy to shed some light...

    Using the EIPS is the crutch of this for me. It's how the doctor and patient talk in the same language and how I report in/measure/benchmark myself. Say I'm a 3 (Out of bed sitting, standing, walking 2 - 4 hours per day), this is a wide range to swing... sitting vs. standing vs. walking, etc. But it's a nice band to "live in" as every day isn't the same. However I don't get to move up to a EIPS 4 (Out of bed sitting, standing, walking 4 - 6 hours per day), until I can hit the top end of the 3 definition... which would be the ability to add up all the times i've been walking around, running errands up and down, to add up to 4 hours. Regarding the jump from EIPS 4 to EIPS 5 you'll note that the 5 allows for 8 hour days, but with difficulty, and a manditory nap. Lerner would never, for example, recommend a 40hr work week where one would stand. He noted it needs to be sedentary And he also believes you technically have a CFS disability until you're into the 6's. I'm on disability right now, and realistically I can't return to my old work environment as a 5. I'd need to be at least a 6.

    To @bee33's example, if I had to guess you'd probably be closer to a 2 on his scale. I'm just like you, where sitting with feet up is very different from sitting in a chair with feet down...

    What's important here to remember is why Dr. Lerner uses/promotes EIPS. In the ideal world it would reach all GPs or at least all infectious diseases doctors so there's a universal language starting to be used. Titers, viruses, symptoms all very so much amongst CFS patients. But one thing is the same, as we decline or recover the one commonality is our strength/stamina/fatigue. And right now there aren't a lot of ways to communicate/measure/benchmark this in the CFS community, let alone the medical community at large.

    SaraM, I believe I'm being treated based on High IgG levels for both. The virus bloodwork he performs (pulled off his website under FAQs) are:
    EBV serum IgM viral capsid antibodies (VCA) - Diasorin, Inc., Stillwater, MN
    EBV early antigen diffuse (EA) - Diasorin, Inc., Stillwater, MN
    ELISA HCMV(V) IgG and IgM serum antibodies to viral capsid, strain 169 HCMV - Diasorin, Inc., Stillwater, MN
    HHV6 IgM and IgG serum - Lab Corp, Dublin, OH
  20. bee33

    bee33

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    Thank you for your clarification and input. I had a discussion about this scale on another website where I was told I was a 4 because I can sit for six hours. But that's the problem: the scale makes no sense. I can't walk for 1 - 2 hours a day, so I don't qualify as a 2, so that would put me at 1, but because I can sit for six hours then I also qualify as a 4. Making no distinction between sitting and walking is such an enormous leap that it renders the different levels meaningless.

    And then jumping in one leap from sitting for six hours (at level 4) to doing any kind of full time job (at level 5) is so wrong it's offensive. The implication seems to be that if you can sit around for six hours a day, and then are able to progress to the ability to sit around for eight hours a day then, oh, look, that corresponds to the time you would have to spend at a full time job so suddenly you can work at an easy, sedentary job? If that were true then a 2 would be able to work at a part time job 1-2 hours a day.

    Sitting around in a stupor of exhaustion bears absolutely no relationship to doing something even very very slightly productive.

    Having any job at all is an absolute pipe dream for me. I have had CFS for over 25 years, and it has gotten progressively worse over the years. The last time I had a full time job was in 1989, when I was feeling thousands of times better than I do now. It was a very easy job stuffing envelopes while sitting down, and I was only able to keep it for seven months because just the effort of getting there and being there every day was overwhelming.

    I know many people here get very upset about the many inaccurate characterizations of CFS that are out there, and I ususally take a philosophical approach that yeah, there's a whole lot of misinformation but that's just how it is, and I usually don't get steamed. But this scale makes me really really angry. It is the most offensive mischaracterization of CFS that I have ever seen.

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