Dr Lerner Patients....Need Advice?

Discussion in 'Fibromyalgia Main Forum' started by llelnino, Nov 12, 2008.

  1. llelnino

    llelnino New Member

    Does he treat Babesia? Should I stick with a Lyme doctor for that treatment? I had a positive Babesia test from Igenex but it was negative twice through Labcorp, what lab does he use to check for Babesia? My EBV IGG was very high so I decided to go see Dr Lerner in MI.

    I went to see Dr Lerner last tues and he ran all of the tests. I have to go back to do the Holter and other tests so I will have to stay there for about 3 days. I just really wished that I knew if he really could help me because I live in NJ and it is a mission and very costly to go see him. I've been reading Karen's posts about Dr Farr and was thinking if I should try him before I start any antiviral therapy. My appetite has been so bad since coming down with CFS and I've lost so much weight. I am so sensitive to everything I just wish that I knew what to try or who I can turn to that could help me in someway. I've just been having this feeling that I will not be around too much longer, I feel bad everyday but at times I go from bad to horrible. Back in June I was seeing a nutritionist that does functional testing and we did alot of testing, DNA Hair Mineral Analysis, Comprehensive Stool test, Cortisol/Hormone saliva testing and the only thing that was found there was that my cortisol levels were very low(of course)Aluminium was pretty high and that I had slight gut dybiosis. She put me on several supplements and said that she wanted to do some detoxing in a month or so but I never went back to her. I was sure that something significant would be found in those tests but not much so out of dissapointment I never went back. This was back in June but now I am wondering if I should've stuck with her.....? I'm not sure but out of the several doctors/specialist that I have been to, she was the only one that at least looked for things, looked outside the box. The only bad thing is that she is not a doctor so she is limited. She cant order any bloodtests. I have been looking at ND's but I've read that they order alot of the same tests that my nutritionist ordered so I dont know.

    I just wish that I could find a Naturopath or Holistic Doctor that has good knowledge about CFS but I have yet to find one.
  2. ladybugmandy

    ladybugmandy Member

    i strongly recommend dr. lerner if you feel your problem is mainly viral.

    if you had a positive babesia test through igenex, make sure you make that clear to dr. lerner. he does treat with antibiotics but uses labcorp. i do not know what he thinks of igenex. if he disregards your igenex results, then i would think about another doctor.

    i am sure dr. lerner will take the igenex results seriously though. he is the best.

    good luck
    sue
  3. llelnino

    llelnino New Member

    That is what keeps me scratching my head. I dont know if my problem is mainly viral or if its something else. What lab does he use to check for viruses?

    Mike
  4. ladybugmandy

    ladybugmandy Member

    he uses labcorp but does his own EBV and CMV testing.

    i do not know what he will say about the positive babesia test you had at igenex but i think it is significant.

    you can consider another specialist, such as dr. enlander or dr. leo galland in NYC, but i am still biased towards dr. lerner because he has helped me.

    i knew my problem was viral for 14 years due to the fact that my illness started with mono and my RNase L activity was extremely high (also i tested negative for everything else)....so i was very comfortable going to dr. lerner.

    sue:)
    [This Message was Edited on 11/12/2008]
  5. llelnino

    llelnino New Member

    I quess I will go back to see my Lyme doctor but I have to correct my low appetite/sensitive stomach issues. I might go with Dr farr because from what Karen(BarronInnovations)explained that he is familiar with CFS and stomach issues. If that helps then maybe I will proceed with Babesia treatment. I know my EBV igg was very high but depending on what Dr Lerner finds in his testing I'm still not too sure if I should do any antiviral medication based on my bad reactions to antibiotics. Maybe I should focus on fixing my gut. Either I will try Dr Farr or maybe go see a Naturopath. I'm just not sure about a Naturopath because from what I read most are not familiar with CFS and at least I know from what I've read here that Dr Farr has seen several people with CFS so he knows what to look for and what tests to run. I'm still in the process of looking for a local PCP that is open minded and/or CFS friendly. I've seen several in NY but its too much work to get there since I no longer have a car. This condition is bad enough by itself but also trying to find help for it is almost impossible.

    Mike
    [This Message was Edited on 11/12/2008]
  6. ladybugmandy

    ladybugmandy Member

    mike:

    if i recall, you have not had the disease for that long and have a good chance at recovery (or at least significant improvement) with the right treatment.

    in my earlier CFS stages, i also had a very sensitive stomach (i even vomited sometimes). i believe enterovirus and other pathogens gain hold of our bodies at various stages of the disease. i also lost weight during the 1st few years but started gaining weight later on.

    may i ask what triggered your CFS?

    thanks
    sue
  7. llelnino

    llelnino New Member

    "The right treatment" those are the key words and from what I read on this site its almost impossible to find the right treatment since we are all so different and there is so much involved.

    I first became sick in Dec 2006 with a flulike illness that turned into a stomach flu like illness. I believe that it was possibly the flu because my girlfriend at the time became pretty ill as well. She even missed work for several days which she never does. I found that odd because she has never been that ill and rarely gets sick other than seasonal colds. She got over it but I remained ill for over a month. I was then in what I quess was 100% remission from Feb 2007 until Feb 2008 when I again came down with a flulike illness that turned into a stomach flulike illness but this time I have remained ill.

    Mike
  8. llelnino

    llelnino New Member

    I'm not too sure about CS, I did a Metametrix Stool Test in june but no yeast or parasites were found but there was slight dybiosis found but that could be from anything. I want to wait on my test results fr Dr Lerner to see what is found then I will decide the best plan of action. I have been thinking about transfer factor as well. I am just very weary of doing high dose meds.

    I have been taking Alive from Natures Way which is in liquid form but I just ran out. Thank you very much for the advice it is very much appreciated.

    Mike
  9. acer2000

    acer2000 New Member

    Dr. Lerner is pretty focused on his herpes virus cause of cardiomyopathy which he calls CFS. If you fit his theory he'd be a good Dr. to get treated by. So its worth going through his evaluation - to see if you'd be a good fit for his treatment. Hes pretty strict in what he does and what he doesn't do, and doesn't take very many suggestions from you, the patient. Which could be seen as a good or bad thing...

    He also tests for mycoplasma Pn. and Lyme/co-infections, although he uses Labcorp. If you are CDC positive on Labcorp and/or your history strongly suggests lyme (like tick bite->rash->symtoms), he certainly will treat you but I'm not sure what he'd do with a partially positive test from IGENEX. There is no question that Lyme is immune supressive and can cause viral reactivation, so if you have Lyme you need to treat it.

    He didn't throw supps at me, and he even asked that I get off all the supps except for some basic ones he has on his approved list. I didn't really mind because to be honest supps have never done anything for me anyways except consume my bank account. But he takes this pretty seriously because he doesn't want any herb/drug interactions complicating the treatment
    In my case he decided to treat my borderline high titre of HHV6 with Valcyte before touching my Mycoplasma Pn. titer, even after I told him that zithromax had made my mycoplasma titer drop and my symptoms get better (albeit temporarily) when my family doctor gave me it for a different reason. I was repeatedly negative for CMV and EBV. I had mono in college and it was pretty mild, it hadn't reactivated with my "CFS". FWIW an elevated EBV IGG is worthless in and of itself, you need to have an elevated EA IGG for it to be reactivated. Everyone who has had mono has EBNA IGG and VCA IGG antibodies. Unfortunately, there is no "EA" test for HHV6 yet to determine if its active or not.

    Ultimately, the Valcyte didn't do anything for me and it just made my liver enzymes go up. Although I didn't get CFS after mono, so it was probably a stretch for me. But it shows you how focused he is on the EBV/CMV/HHV6 theory...

    Its worth a shot to see him, let us know how it goes.[This Message was Edited on 11/13/2008]
  10. llelnino

    llelnino New Member

    Thank you for responding. My VCA EBV IGG, EA IGG and EBNA IGG were all elevated. I have to go back next week to finish testing which I am going to do I'm just not so sure that I want to start taking high dose meds again since I didnt handle the antibiotics well at all. I might try transfer factor depending on what he finds. I've come up negative on Labcorp Lyme/Co-infection testing in the past so I'm not expecting anything different this time.

    I'll keep you posted.
  11. ladybugmandy

    ladybugmandy Member

    if a stomach illness was a main feature, you may try an endoscopy and biopsy for enterovirus. email kristen loomis at the hhv6 foundation and she will tell you where to have the slides sent.

    incidentally, my igg to EBV EA was normal repeatedly when tested at specialty labs, but slightly elevated at dr. lerner's lab. i believe his testing is superior.

    good luck
    sue

  12. llelnino

    llelnino New Member

    Thank you

    I will contact her to see if she could get me that information. The hard part will be to get a doctor to actually perform the endoscopy and biopsy. I have tried in the past but was unsuccessful. Maybe Kristen has some suggestions.

    Mike