Looking for CFS Doctor in Louisville, KY area

Discussion in 'Fibromyalgia Main Forum' started by michael1972, Apr 3, 2007.

  1. michael1972

    michael1972 New Member

    Hi all. I've been sick for almost a year now with symptoms that seem to suggest a CFS. MS, Chronic Lyme, Hypothyroid, etc has been ruled out by MRI and blood tests....although I haven't given up on Lyme yet since I used to live in NY and had the classic bullseye rash about 7 years ago. Anyway, I have seen 5 specialists so far, plus my PCP, and none of them are even willing to discuss or consider CFS. Does anyone know of a good doctor in the area....even within a couple hours drive (cinci/indi/nashville/etc). Thanks for your help. Michael
  2. EllenComstock

    EllenComstock New Member

    Sorry-I'm not from your area, but have you checked the "Doctor" section above? You just click on it and you can click on the state you are from. I see there are three doctors in Kentucky. All of them mention FMS, but probably they are knowledgeable in CFS as well. It wouldn't hurt to call them and ask and also ask if the doctor is familiar with testing for Lyme.

    Even if they cannot offer you what you need, perhaps they will know of another doctor in your area that can help.

    Good luck.

    Ellen
  3. meditationlotus

    meditationlotus New Member

    I go to Dr. Donald Wood, M.D., 3606 Klondike Lane, Louisville, Kentucky 40218 Telephone: 502-479-8550.

    He is an Endocrinologist. He accepts that CFS is real. In fact, he diagnosed me as having it. He treats me for hypothyroidism and neurally mediated hypotension. He is not a CFS expert. But he is knowledgeable about it. He is very open-minded when I tell him about an herb, etc. that I am trying that is helping me. He is kind and compassionate and very patient. Hope this can help.
  4. meditationlotus

    meditationlotus New Member

    Dr. Wood would most likely have you tested for lyme, etc. I have heard that sometimes lyme tests can say you have tested negative, when in fact you do have lyme. Evidently the standard tests are not always accurate. Dr. Wood didn't tell me that, but I read about it in the CFIDS (Chronic Fatigue Immune Dysfuction Syndrome) Journal.

    In the article, a patient by the name of Patti SMith or Patti Schmidt had CFS for about 20 years. She had been tested for lyme repeatedly and it always came back negative. She heard about a specialist who had a very different way of testing. She had to go out of state (Maryland, I think). Anyway she tested positive. Took the meds and got so much enery she couldn't believe it. Haven't heard how she is doing now.
    [This Message was Edited on 04/03/2007]
  5. michael1972

    michael1972 New Member

    Thanks for the information and I will certainly look to make an appointment with Dr. Wood. The only clinical evidence I have is a positive tilt table test, which the cardiologist dismissed by reminding me to "know the signs". OK, but what about the fact I am lightheaded almost all the time when standing or even sitting for long periods???? And all these other things that make the simplist tasks nearly impossible to do??? Unless your dying, it almost seems worthless to go to a doctor. Seems like you get more information from google and boards like this. Anyway, that's a whole other thread. Thanks again for the info!
  6. meditationlotus

    meditationlotus New Member

    I don't understand how a cardiologist could dismiss a positive tilt table test. Didn't he treat you? Mine was positive too. The cardiologist gave me numerous beta-blockers which only made me worse. Dr. Wood was already prescribing florinef which helped some.

    I have no insurance, so I quit going to the cardiologist. I've found that licorice root works about as well as florinef for helping the body build blood volume, plus it is good for supporting the adrenal gland, and boosts the immune system.

    Also, you need plenty of salt and water to build blood volume and help with neurally mediated hypotension. But you need potassium to balance the extra salt.

    I read on this message board that "midodrine" is really good for NMH because it is a vasoconstrictor. I asked Dr. Wood about it, and he prescribed it for me. I take 5 mg. three times per day. I really do better on 10 mg. three times per day, but I don't have health insurance and this med is expensive. Also, the pharmaceutical company ended their "patient assistance program". Wasn't that nice of them - treating uninsured people,who can only lie down to keep from having symptoms, so inhumanely?

    Hope Dr. Wood can help you. Also, this board is very helpful. The founder of "Prohealth" had CFS FOR 18 YEARs and is now well. He said that he got rid of mercury in his body. Started using "transfer factor". then he started juicing. The combination worked.

    We each have to find our own way with this. Good luck!

  7. michael1972

    michael1972 New Member

    I'll have to try the licorice root. I was very disapointed with the cardiologist. My wife was in disbelief. The thing that complicates things is my blood pressure is generally high. It's pretty normal now, but at my first appointment with the cardo he wanted to put me on medication. I did take it for 2 weeks but after the tilt table test I stopped.

    Sorry to hear you are dealing with this without insurance. I'm on disability now, but it's a constant struggle with the insurance company. Even though it's far from my worst symptoms, I've found using the mental problems far easier to get disability approved rather than the medical/physical symptoms due to "a lack of clinical evidence". Apparently telling my doctor and insurance rep that I can barely complete simple tasks around the house isn't good enough.

    I know some people that develop good relationships with their doctor and get most, if not all, the medication they need in the form of samples. It never hurts to ask.

    Thanks again for all the info. I made an appointment for 4/24...I'll let you know how it goes.
  8. meditationlotus

    meditationlotus New Member

    neurally mediated hypotension if your blood pressure is high. Obviously too much salt can make it higher. Licorice root can raise your blood pression, as does midodrine. I guess you just have to constantly check your blood pressure to make sure it is not too high while treating the NMH.

    I've been told that mental health disability combined with CFS symptoms is taken more seriously by the government when applying for social security disability. May have to go that route if I don't improve in the next few months.

    Dr. Wood doesn't have samples of midodrine. I may try the cardiologist who diagnosed me.

    Good luck.
    [This Message was Edited on 04/05/2007]
  9. meditationlotus

    meditationlotus New Member

    in Indianapolis, Indiana. His name is Dale Guyer, M.D.

    Go to Home on this website and look up physician treatment info and it will list him. He is suppposed to be really good, but I'm sure he would be too expensive for me.

    Good Luck.