To LISAPETRISON

Discussion in 'Fibromyalgia Main Forum' started by zipk, Dec 6, 2006.

  1. zipk

    zipk New Member

    Hi Lisa:

    I am in the Chicago area and wondered if you would share your doctor's location and how I might track him/her down...

    Thanks,
    Mo
  2. Slayadragon

    Slayadragon New Member

    The doctor I use actually is in Indianapolis. That may be a bit too much of a hike for you? His fees are something like $1,000 for an initial appointment and $350 for follow-ups.

    I do have a doctor in Chicago who knows a whole lot about CFS, but as far as i've been able to tell, he doesn't do a lot to treat it. He's really good, but pretty much drug oriented and not terribly experimental. if there are drugs eventually shown to be helpful with CFS, he will be good with them. It's nice that he's prepared for that day.

    I searched for a very long time before I found my Indpls. doctor and didn't come up with anyone who treated CFS in the ways that (based on my prior readings) seemed to have been most successful.

    I wonder if it's because of liability rules in Illinois? I know that it's almost impossible to practice gynecology here because of the malpractice insurance.

    And actually, i did see an osteopath who did stuff like this early on. He was somewhat helpful to me (measured and prescribed DHEA, which had a miraculous effect for me at the time, for instance). Soon after he got his clinic closed down, though. Maybe he really did something wrong. Or maybe the rules are tougher here. I don't know.

    If you want the info on either of my doctors, let me know. I can't find my address book at the moment.....
  3. zipk

    zipk New Member

    Hi Lisa:

    Thanks for the info. Yes, I'd appreciate the contact info on the doc in Inianopolis. Are you seeing results?

    Thanks,
    Mo
  4. Slayadragon

    Slayadragon New Member

    I've been seeing him for eight years, a couple years into his practice. I've made terrific progress since then, absolutely.

    But you have go in with a couple of things in mind, since he's like no other doctor I've ever heard of anywhere (much less encountered):

    * He doesn't believe in the term CFS, because he thinks it's not useful enough for him to figure out what to do. He looks at each patient totally separately and then creates a totally individualized plan, using (just as far as I know) at least a hundred different sorts of treatments. It is nothing at all like the FFC's where they have a formula with a few protocols, and also nothing like doctors that specialize in certain areas (like viruses).

    * Because of this, he has to figure out where to go with you. I think my approach is best, which is to be open to what he suggests but also to have in mind the specific problems that I have and some information (from my own research) about things that might be useful. Otherwise he'll just go by the huge amount of information that he collects from you in terms of filling out forms.....which is fine, except that it takes him a while to get a sense of you as a patient. The first meeting won't be enough. The more that you can work with him, the more progress you'll make. His intuition is extremely good, but his time to sort through all the info in your chart is limited. An hour initial meeting is by no means enough time.

    * He's really, really big on lab tests. If you have an idea about what your main problems are or have some treatment areas (e.g. hormones or detox) that you think might be appropriate, that might be best since it will give him an idea of which ones to do first. Otherwise he'll probably just start throwing them at you.

    * All this takes time for him to figure out. Unless you help him when you go in, you may not get any results for quite a while since finding the right thing for you is like searching for a needle in a haystack. A lot of people get impatient, I think. After a bunch of lab tests and one or two tries of things that don't help much, they give up.

    * He likes to try new things. I pretty much let him do whatever he wants by now (except that I have very bad veins and so can't get IV treatments). I don't think he tries things that he's not certain have an effect on some people when you first come in, but he may suggest them later on. If you're willing to take this approach, some will probably work--maybe 1/4. If you'd rather wait until he's pretty sure about things, you should ask him upfront how much success he's had. He'll tell you (or at least he tells me).

    * If you have _specific_ problem (a parasite no one else can eradicate, flesh-eating bacteria, a resistant vaginal infection your gyn has given up on), he'll almost always be able to figure out how to fix it. It may take a bit of time though.

    * If there's something reasonable you want to try and it seems to have the potential of helping you, there's a very good chance he will let you. For example, if you believe a major problem is unrefreshing sleep and that Klonopin might help, it's unlikely that (at least after you've built up a relationship) he won't let you try it. A lot of doctors would refuse, of course. He won't prescribe just anything, of course. It has to make sense to him. But if it makes sense to you (based on your knowledge of yourself and your research), he'll know all about the treatment and let you try if it seems reasonable to him.

    In summary, if you're going to use it, you've got to keep a few things in mind:

    1) You have to be in it for the long haul. You probably will see improvements within the first six months or so, but chipping away with whatever is wrong with you is going to take a lot longer than that. Also, the more often you see him, the more he will know your particular case and the more results you are going to get. Obviously, this is expensive as well as effortful if you have to drive there. (He does phone consults, but they're more expensive and perhaps not as effective.)

    2) The more involved you are in your own treatment (including knowledge gathering and reflection), the better you're going to do.

    3) You have to have a high tolerance for ambiguity. It may not seem like you're on a straight line path. Things may circle about a bit, the whole time you're there.

    4) You have to understand that even if he doesn't appear to know the answers, he actually knows at least as much about every possible treatment as any other person in the field. The reason he doesn't seem certain is because he's not pretending there's one answer for everyone.

    5) You have to be prepared for not every single thing he does to work. Even if you ask him only to do things that he already has had success with, there are going to be some failures. I believe his success rate is higher than just about anybody in the field. It's just that _everybody's_ going to experience a few failures, because he uses so many treatments.

    You've got to be prepared for that. And as long as you keep seeing him, he will keep finding things for you to try. They will be reasonable, based on his assessment of your lab tests and symptoms. But they won't always be right.

    On the other hand, doctors who use one treatment for everybody are going to get some patients with great success and who are totally happy, and some patients with total failures and who are really unhappy. To some people they seem like a miracle, and their praises are shouted from the rooftops.

    But if you're not one of those lucky patients--and they're generally lucky with just one treatment--all your money has been wasted because there aren't alternatives.

    6) It takes time for him to go through people's charts and think about what would be right. You need to schedule enough time with him if you want to see fast progress, therefore. If I lived in Indianapolis, I think I'd see him every month (especially now that I'm doing AV's and other things). As it is, I'm going to try seeing him for a whole hour every time I go down. I have a lot of issues I'd like to address (or readdress since we haven't looked at them for years), and half an hour simply isn't very long.

    I believe that if you're up to this approach, he's _absolutely_ the best. I've made amazing progress over the past eight years. Most of it was in the first couple of years, with gradual improvements since. We've discussed thoroughly or been through basically every treatment I've read about (including just about every one I've seen on this board since I found it three months ago), and years and years before other places started using them. His suggestions about things that I could try are overall really good, and his knowledge about things that I have an interest in is absolutely superb.

    But I'm his ideal patient--extremely well-informed (when I started seeing him, he was about two years into his practice and we knew about the same amount about this stuff), long-term oriented, able to quickly grasp what he's saying, very conscioius of my own body, with good health insurance and the ability to pay for stuff out of pocket. He will help you if you just go in and follow the instructions (and pay the bills), but progress will not be nearly as fast.

    Right now I've made a commitment to myself to focus on my health, and hopefully I will start to see more big improvements. But this is not an easy problem to solve, and so expecting to get fixed after the first appointment or two is just unrealistic.

    Again, he really does not like the term "CFS". (I'm not sure about FM.) Apparently he believes that the problems of CFS patients are so diverse that the diagnosis does nothing to lead him into the right direction. The phone hold tape now has a line that says something to the effect that he treats the problems underlying CFS, but I doubt it will come out of his mouth and you might as well not even bring it up. It's not that he doesn't know what it is. It's that he knows so much _more_ about what it is than everyone else that he doesn't bother with it.

    You also should be prepared to be patient with the office administrative staff. They're all extremely nice and quite good, but he has _no_ interest in administrative stuff and leaves the management of it to others. Just as a start, you _always_ will have to call to remind them to get your prescriptions. They won't submit your bills to insurance for you. If something's not working, don't expect to call and get him to give you advice (unless you want to pay for it). it says upfront on the phone message machine that if they're not open and it's an emergency, call 911. (I don't blame him for any of this.....he has mostly extremely sick patients who'd otherwise be calling every five minutes if there weren't some limitations put on things.) If you are on something more potent (like the AV's), help with real problems will be a little more available. But they're not going to babysit you....which is another good reason to be informed yourself.

    If after all this you're still interested, the info is:

    Dale Guyer, M.D.
    836 E. 86th St.
    Indianapolis, IN 46240
    317-580-9355

    Let me know if you have other questions. You might as well have as much info as you can upfront, since if you're not going to fit with his style then there's no sense in even starting an initial consult (at least in my opinion).
  5. zipk

    zipk New Member

    Wow, thanks Lisa. I've heard of him before. I appreciate all you wrote. I myself am a very well informed patient. I will consider him.

    Thank you,
    Mo

  6. bigmama2

    bigmama2 New Member

    I just wanted to say thanks you for taking the time and energy to write that huge post. I found it very interesting, and encouraging that you are doing better.

    After 11 years of fatigue and Dr appts. and other unusual symptoms (that are typical of CFS, not fibro) I just recently got diagnosed. since then I have been reading everything I can about CFS treatments, testing, and "alternative/natural" health and healing. I have found your posts to be very informative! Just wanted to let you know!

    BigMama2
  7. Slayadragon

    Slayadragon New Member

    Thanks very much! I'm very glad that you're starting to feel a bit better too.
  8. Slayadragon

    Slayadragon New Member

  9. Slayadragon

    Slayadragon New Member

    He will give you the full half hour for a follow up, btw.,
  10. cherylsue

    cherylsue Member

    Thanks, Lisa, for that info. I will file that info away for future use. Dr. G is closer than the FFC in Detroit. I already know their protocol which I only agree in part.

    I agree with your accessment of our Chicago CFS doc. But, in his own way he ran tests on me that no other doctor had thought to do. However, I cannot take all the RX he had prescribed for me. He tried, though.

    He just prescribed .5mg of Klonopin for me at my request. I took it last night before bed, and I'm still tired. I took two naps today, and didn't do much of anything. What has been your experience with Klonopin?

    Thanks for your input. Hope you are improving.

    CherylSue
    [This Message was Edited on 12/13/2006]
  11. Slayadragon

    Slayadragon New Member