Should I stop seeing Dr. Lerner?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 11, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i need some advice....

    i think i am becoming very unhappy with dr. lerner's office. dr. lerner has helped me. my life is no longer absolutely unbearable and for that, i am very grateful. however, his insistance that i not take supplements such as milk thistle, which may help my liver, is making me quite upset.

    also, the office staff knows i am a cash patient and go through a lot of trouble to pay for the travel and treatment. they have no discounts for people with no insurance as some doctors do. i feel that it is their responsibility to ask me for the entire payment after each appointment but i just recieved a bill for several hundred dollars...i guess they miscalculated some of the payments when i was there. i always stop and pay cash before i leave the office.

    i will argue the bill, but what's the point? it's either do what they say or find another doctor.

    i just don't know what to do. do i continue to see dr. lerner every few weeks, which is becoming a huge financial burden, and continue to pay for tests i can get for free in canada??

    do i continue on the treatment myself and trust another doctor to prescribe the drugs that he likely has no experience with?? (i know another doctor would not require me to travel to see him every few weeks!)

    i just do not know what to do. i am nowhere near being well enough to even work part time yet but i know dr. lerner's treatment is working, albeit slowly. still, i do not want to use up all my mother's savings on this! God knows what i will need money for later with this unpredictable disease....

    will it be worth it to stay with dr. lerner so he can keep tweaking the dosages like no one else knows how to do? given that it will likely take me years to get better, will dr. lerner even be in practice long enough to help me with the fine tuning of my meds if i do improve enough to try to lessen them (he is 80!)??

    the only other person in the world who will know how to treat this CFS even close to as well as dr. lerner, is dr. montoya, who is just too far for me to ever see.

    any advice would be appreciated....


    [This Message was Edited on 05/11/2009]
  2. gapsych

    gapsych New Member

    This has to be a tough decision. I just do not understand why these doctor's charge so much.

    The traveling would not be an option for me. Did you end up moving to Michigan?

    As far as the milk thistle, I don't think it has been proven scientifically that it really does what it is suppose to do and not putting more stress on the liver.

    I will try to find some information from a good health site about supplements and scientific testing on them, but I can't remember the address until I check my files.

    Is Dr. Lerner consulting or having you see a liver specialist? Is this an area of his expertise? I would think so since the antivirals do effect the liver.

    Good luck and keep us posted.

    [This Message was Edited on 05/11/2009]
  3. misskoji

    misskoji Member

    Oh dear, reading your post, I am cringing for you. I am so sorry that you are faced with this decision.

    Money-I would definately say that you will need some in the future, as nobody knows what the future will bring. And I can't imagine having to pay for all the medical bills on top of travel and other costs to see him. I have a very hard time just keeping up with travel and co-pays to see him. You may have addressed this before, but won't Dr. Lerner accept the tests that you can have done in Canada, or is it the issue of finding a doctor to run those tests?

    Travel-a great expense for you, both on the pocket and your body. I know the travel for me wipes me out for a couple of weeks after I've gone...and it sounds like it does hamper some of your recovery for sure. On the other hand, it sounds as if there is nobody near you, or even a possibility of getting a doctor even close to what Dr. Lerner does in Canada.

    I don't know what to say...I guess none of us can decide for you. It's just that you have fought so hard, for all this time. I would really be sad to see you give up on Dr. Lerner now. Not only that you have been with him so long, but also, will he take you back if you can't fair it on your own? And yes, who knows how much longer he will be around to be able to treat us?

    And I sooooo worry about you fairing on your own with valcyte and your liver! You are a very smart and educated woman on this subject though, perhaps you could guide a doctor through it? I just don't want you to get worse is all.

    My advise to you is do not give up now! You have been through the mud trying to get there and get better allllll this time. And yet you find the strength to keep fighting. Have you yet applied for disability in Canada? I think this would help you some with your finances and maybe put you at ease for future survival and costs.

    Have a very honest discussion with the Dr. about exactly what you just told all of us. I know firsthand there is not a lot of time to chat with him and that he is sometimes dismissive, (or appears to be anyway). Perhaps sit down and type him a letter expressing this. That way you don't have to worry about not having enough time to talk face to face or forgetting what you wanted to say to him or ask him.

    I'm really, really rooting for you Sue! Please let us know what you decide.

    Big gentle hugs,

    [This Message was Edited on 05/11/2009]
  4. gapsych

    gapsych New Member

    Sue, I found this information at:

    The general site where you can search for different supplemtnts and medicationsis:

    This website is very informative and put out by The Department of Health and Resources.

    I can't take credit for finding this. KJM, orginally posted this useful website.

    Milk Thistle Effects

    Full Title: Milk Thistle: Effects on Liver Disease and Cirrhosis and Clinical Adverse Effects
    September 2000

    Please Note: This evidence report has not been updated within the past 5 years and is therefore no longer considered current. It is maintained for archival purposes only.


    Structured Abstract
    Objectives: This evidence report summarizes studies of efficacy and adverse effects of milk thistle in humans with alcohol, viral, or toxin-related liver disease.

    Search Strategy: English and non-English citations were identified through December 1999 from 11 electronic databases, references of pertinent articles and reviews, manufacturers, and technical experts.

    Selection Criteria: Selection criteria regarding efficacy were placebo-controlled trials of milk thistle. For adverse effects, all studies in humans were used.

    Data Collection and Analysis: Abstractors independently abstracted data from published reports. Relationships between clinical outcomes and methodologic characteristics were examined in evidence tables and graphic summaries. Exploratory meta-analyses were used to examine possible patterns of effects.

    Main Results:

    •Sixteen prospective placebo-controlled trials were identified.

    •Interpreting the evidence was difficult because of inadequate reporting and study design regarding severity of liver disease, subject characteristics, and potential confounders.

    Outcome measures, dose, duration, and followup widely varied among studies.

    •Four of six studies of chronic alcoholic liver disease reported significant improvement in at least one parameter of liver function or histology with milk thistle.

    •In three of six studies that reported multiple outcome measures, at least one outcome measure improved significantly with milk thistle compared with placebo, but there were no differences between milk thistle and placebo for one or more of the other outcome measures in each study.

    •Three studies evaluated the effects of milk thistle on viral hepatitis. The acute hepatitis study showed no improvement in liver function. Improvement in aspartate aminotransferase and bilirubin was significant in the study of acute hepatitis. Two studies of chronic viral hepatitis showed improvement in aminotransferases with milk thistle in one and a trend toward histologic improvement in the other.

    •There were two studies of patients with alcoholic or nonalcoholic cirrhosis. In one study, milk thistle showed a positive effect, but no data were given. In the other, milk thistle showed a trend toward improved survival and significantly improved survival for subgroups with alcoholic cirrhosis or Child's Group A severity.

    •Two trials specifically studied alcoholic cirrhosis. One showed no improvement in liver function, hepatomegaly, jaundice, ascites, or survival but did show nonsignificant trends favoring milk thistle in the incidence of encephalopathy, gastrointestinal bleeding, and death in subjects with hepatitis C. The other reported significant improvements in aminotransferases with milk thistle.

    •Three trials evaluated thistle as therapy or prophylaxis in the setting of hepatotoxic drugs; results were mixed.

    •Meta-analyses generally showed small effect sizes, some statistically significant and some not, favoring milk thistle.

    •Available evidence does not define milk thistle's effectiveness across preparations or doses.

    •Little evidence is available regarding causality, but evidence suggests milk thistle is associated with few, generally minor, adverse effects.

    Conclusions: Milk thistle's efficacy is not established. Published evidence is clouded by poor design and reporting. Possible benefit has been shown most frequently, but inconsistently, for aminotransferases, but laboratory tests are the most common outcome measure studied. Survival and other clinical outcomes have been studied less, with mixed results. Future research should include definition of multifactorial mechanisms of action, well-designed clinical trials, and clarification of adverse effects.

    [This Message was Edited on 05/11/2009]
    [This Message was Edited on 05/11/2009]
  5. ladybugmandy

    ladybugmandy Member

    thanks so much for your posts! gap....i did also read on the net that the milk thistle effects hadn't been established...but i think there are some people on the boards who say it helped them with their ALT.... but who knows....

    i think what i will do is tell dr. lerner i need to take 6 months off to save up money and i will ask him to write up a treatment plan.

    for a very long time, nothing has changed in my treatment but the tweaking of the valcyte dose. none of the expensive tests he has run have ever shown anything more than EBV and HHV6.

    i guess what i am worried about most is valcyte's toxicity and all the possible complications.

    i have made an appt with a top toronto virologist. i consulted with him once before, before i started with dr. lerner. he didn't seem to know too much about CFS and did not seem interested. he also did not condone anyone taking valcyte for more than 6 months or so. still, maybe now that he sees that i am better, he might help me out with some advice or maybe a hepatologist referral.

    surely, a hepatologist would be able to tell me if my liver was in danger!? of course...i'd have to find one who doesn't think CFS is imaginary...... asked me if i could have my blood work done here, but dr. lerner won't allow it.

    gap...i did not move to MI....

    if only my liver wasn't an issue, i could just go to michigan every 6 weeks and everything would be fine!! arghhh

    if it's not one thing, it's another.....

    thanks for listening to me vent!


    [This Message was Edited on 05/11/2009]
  6. TigerLilea

    TigerLilea Active Member

    Have you talked to your GP about continuing the protocol that Dr. Lerner started you on? If your GP is willing to work with you, then possibly you could just see Dr. Lerner once a year for a re-check?? I'm assuming that you live in Canada. If Dr. Lerner wants more testing done, could you have your GP write up reqs here in Canada and have the testing done here that is covered by your provincial coverage?

    I'm very leery of CFS protocols that are going to take years to work. Dr. Pall feels that if a protocol is going to work for CFS, then there should be significant improvement within about three months.
  7. ladybugmandy

    ladybugmandy Member

    i may be able to find a doctor here who will follow the protocol but they would not know what they were doing.

    i have asked dr. lerner many times if i could have the blood work and urinalysis done here but he says no.

    the fact is, there is no doubt that dr. lerner's protocol works. i am better. my RNase L is drastically lower (it may even be normal by this point). after scouring the internet, i have found several posts from people who claim they have improved greatly after years on antiviral protocols. i think it depends a lot on how long you have been sick and if you have co-infections.

    you're right though, it is odd. HIV patients, even after many years of not being treated, respond quickly (i think) to anti-retrovirals. why does it take so long with CFS????
  8. romalaw

    romalaw Member

    What an agonizing situation to be in.

    Here are my thoughts..., you've been in treatment with Dr. Lerner long enough to pretty much know what his protocol is and what tests he runs. You know what he is monitoring, in addition to your viral titers and indicators, is your liver. You are an extremely intellegent, well researched young woman who also is in touch with her body. It seems to me the key would be to find a doctor, doesn't matter the speciality, who will work with you. In many ways, you probably know more about this illness than Dr. Lerner, mainly because his focus is so narrow. I know from your posts that you stay up on all the latest research, so I think you could very effectively manage your treatment with a compliant doctor. I trust you have kept a copy of all of your medical records and lab results with Lerner.

    The doctor I see is always willing to work with me around new treatment options, many of which I bring to his attention.

    Ultimately, as others have said, it is your decision. This nature of this illness so often puts us in a double bind--no energy and no money--us needing both to seek out the help we need.
    My thoughts are with you.
  9. Waynesrhythm

    Waynesrhythm Member

    Hi Sue,

    I'm not good at all at navigating our health care system, so I can't give you any practical adivce on that account. What I might recommend however, is to be really honest with yourself about your expeiences so far and what it might portend for future developments.

    Perhaps evaluate very carefully what you truly believe your prospects are for getting completely well following Dr. Lerner's protocol. And if these prospects are not high, is it really worth it to continue with a therapy that you seem to believe is harmful, both physically and financially.

    In the end, I think it comes to trusting yourself, and following your best instincts. For every pro argument, there is likely a con argument. It's good to look at them all, perhaps assign a certain weight to each one, and then hand it all over to your intuition. One yardstick I use for myself in any given situation is whether things are "flowing" as well as they should be.

    Best to you as you contemplate this big decision for yourself.

  10. ladybugmandy

    ladybugmandy Member

    thanks, guys. you certainly gave me something to think about. romolaw..thanks for the compliments, they made me smile:)

    to be honest, i think i can do it myself - find a doctor here, send my blood away to US labs for antibody titre testing, keep on top of the bloodwork i need to make sure the valcyte isn't harming me. it would just take a lot of research and footwork.

    if i cannot find someone here that i trust, i can do phone consults with dr. galland in NYC, whom i liked (he just doesn't have much valcyte experience). at least that way, i would save on the travel costs.

    knowing all of this, i am still petrified of leaving dr. lerner's practice - and i am not sure if the fear is logical.

    maybe i will see what the virologist says (i made an appt with a local virologist). also, i will try to see a hepatologist and then make my decision.

    my worse fear is developing some problem and not being able to take valcyte..then what will i do?



  11. ladybugmandy

    ladybugmandy Member

    cfs...thanks for the post. sadly, although ampligen has theoretically been available here since 1996, no one has received it. i don't think there is any doctor here willing to prescribe it. i have heard of one HIV patient traveling to montreal from NYC for the drug but that's it. it's strange, isn't it? i would have expected patients here to be clamouring for it.

    i guess i will talk to dr. lerner about what can happen if i continue on the valcyte with elevated enzymes and i will ask him to write up a treatment plan.

    i suppose i can go back to him in the future if i need to....

    thanks, everyone.

  12. ladybugmandy

    ladybugmandy Member

    cindy..thank you for that information. i looked up betacol and found quite a few articles. i would like to ask my old doctor, dr. leo galland, about it. he is an authority on integrative medicine.

    i guess there are options for me. i could stop seeing dr. lerner, take betacol, milk thistle and artemisin (for HHV6) on top of my current drugs and see what happens....

    i'm just really scared....i still have very bad days and any progress i have made seems fragile again. i had a few great days but my brain still is quite foggy and i get very very tired easily. i did not want to leave dr. lerner until i was a little better...

    thanks for reading

  13. wldhrt

    wldhrt New Member

    I know you feel that Dr. Lerner has helped you, but from following your posts it seems like your progress is fragile. You've been on the antivirals for quite a long period; I don't know that it's necessary to be on them for years, as Lerner sometimes advocates. In fact, you might feel better off of them for a while - that's how it's worked for me. If your RNase-L is in fact lower, or normal, then why do you still need to be on an antiviral?
    I know several people who were frustrated with Lerner's attitude regarding other treatments and his insistence on doing everything himself. You are in charge of your health and should do whatever you feel you need to do, regardless of what Lerner thinks. Whether that means taking a supplement, getting labs done, finding a local doc, etc., it's your right to take your own steps to improving your health. You've done enough of your own research to know what to look for with this illness, and what treatment modalities might be helpful. I have a problem with Lerner's rigidity as far as not looking at other causes or treatments; most of us have some combination of issues beyond viral infection or reactivation that needs to be addressed.
    The fact that you've been on antivirals for so long increased your immune activation, which, according to DeMeirleir, can worsen gut permeablity. Have you been tested for gut pathogens (an Immunobilan test would show these) in the blood? Dr. Galland would be all over that, as well as food sensitivities.
    Also, milk thistle is a weak liver detoxifier. A better choice, especially for us, would be glutathione. If you take at least 1.8 gms. daily of N-AC, that may provide you with enough glutathione to help protect and detox the liver. It's also part of the methylation process, which some believe is damaged in our illness.
  14. ladybugmandy

    ladybugmandy Member

    thanks for the post. i take NAC but sometimes forget (1.8 g twice a day).

    yes, i have been tested for gut permeability by dr. galland and it was normal. he tested me for everything. he even sent me to a top manhattan parasitologist (one of guiliani's doctors) who swabbed my rectum (lol).

    i guess i have always felt that antiviral therapy was the way to go. i know it in my gut.

    i believe we have to keep taking the antivirals because, like all herpes viruses, they can reactivate at any time.

    i just wish there was something else proven to help fight HHV6 that wasnt toxic. k. loomis really believes in immune boosters but i haven't really given them a chance. maybe i should. i tried immunocal for a while but the taste made me gag.

  15. outofstep

    outofstep Member

    Dr. Lerner isn't giving you very good options: either stay on reduced dose and potentially increase resistance or stay on full does w/o liver supplements and potentially cause permanent liver damage. I wouldn't be happy with either of those. I think that you're doing the right thing getting some other opinions and seeing what people in your area can do for you. You can always just take a "break" from Lerner and then go back if you need to.

    Just wanted to let you know that I've been off Valcyte for over a year and have not lost any ground-am still much better now than I was before I started taking it.

    I agree that if you had viral-onset then you need antivirals, or at least some kind of immune-modulating treatment (preferably both). There should be alternatives to Valcyte in the near future so it won't always be this "Valcyte or nothing" situation.
  16. ladybugmandy

    ladybugmandy Member

    thank you. i am surprised you kept the improvements even when you stopped valcyte. i stopped it once and 2 weeks later, i became so ill i really thought i was going to die. i had to rush to MI the next day.

    i eventually became so sick i almost killed myself. the brain fog was unbearable....i started having fibro pain which i never had was very scary.

    i don't know whats going on inside my body. i am really scared.
  17. outofstep

    outofstep Member

    oh geez Sue that's terrible!!! If you went off the Valcyte again and began to deteriorate do you think that you'd be able to get back on it before things got really bad?
    Were you still on the Valtrex too or did you just stop everything?

    It seems to me that sometimes drs who are researchers can get a little too caught up in their research instead of their patients, and sometimes you just have to do what you think is best for yourself. You said that you're seeing a hepatologist right? Maybe that dr. can figure out how to keep you on the Valcyte-even if you can just stay on it until something else becomes available...

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