Small Town Doctors Inexperienced in CFS

Discussion in 'Fibromyalgia Main Forum' started by tulip922s, Aug 10, 2003.

  1. tulip922s

    tulip922s New Member

    I have gathered a wealth of information from this site and from the many books in the library I've gotten on CFS. One of my favorites is From Fatigued to Fantastic. Trouble is I seem to be far more educated on what I need to have done than any of the 11 doctors I've seen for this illness.

    Everytime I mention PCR/DNA testing, mycoplasmas, parasites, antibiotic therapy, etc. all I get is puzzled looks. My dream day would be to open my door and see Dr. Cheney, Dr. Bell, or Dr. Teitelbaum on my doorstep,,,,well heck, I'd just be happy if they were in the county.

    I am so ill that I (with help) could only travel and hour or two away which still wouldn't put me close to any of the docs specializing in this illness. Anyone else feel this frustration? Tulip
    [This Message was Edited on 08/10/2003]
  2. nancyw

    nancyw New Member

    Hi Tulip: Welcome to the wonderful world of small down docs. I moved from Colo Spgs, CO to Farmington, NM about 2 years ago. I like it here, EXCEPT for the docs and hospital. The only place I found that is decent is the Immediate Care Facility, but of course, they are only for emergent type things. I had to do a lot of research to find a doctor any where near my home that even believed in fibro. After she dx'd me (she's in Durango; about 1 hour away), I went back to my main doc with the dx. She wasn't terribly thrilled with the dx, but we're struggling along. Decided to go to the rheumatologist (supposedly the experts in this field) and had a horrible experience with her. Basically she told me to get a breast reduction and find a church to go to. Didn't give me the test for fibro, wouldn't discuss anything but the depression, and to top it off, she charged me $370 for my visit! You can search under my name (NancyW) if you want the gory details. Anyway, I would suggest doing a post on here for your area, but you're probably going to have to go to a bigger town. Do a search for docs on this site (top of this page) for your area. Good luck and let us know what's happening. Take care.
  3. elaine_p

    elaine_p New Member

    All you can do is find one who believes in this as an illness, has an open mind, and is willing to learn. Find out which of the docs is willing to read Appendix A in Fatigued to Fantastic. Then print out the articles on mycoplasmas/abx therapy, PCR testing, etc. There are several articles in the Library you can print out, like about hypercoagulation, etc. Many of those are written by docs, so they're liable to pay more attention. (I'm in a similar situation, having moved to rural North Dakota from Portland, where I was seeing a doc who specialized in CFS.)

    These days, doctors are bombarded with new information all the time about new drugs, new treatments, new illnesses, etc. So, unfortunately, we have to do some of their work for them since they probably don't want to take the time to research something they're not even sure is real.

    Someone posted here that they have an agreement with their doctor. The person does the research and brings in the appropriate articles, and the doctor is almost "just" a consultant who can prescribe meds. (I don't remember the exact arrangement or who I'm talking about.)

    Good luck!
  4. JaciBart

    JaciBart Member

    Better be careful not to imply ALL small town docs, I go to Madwolf from here (the board) and he is in a very small town, around 1500-2000 I am guessing and he is the greatest. There is another in the office there and it is 20 miles or so from Spokane, a large area, one of the largest in the states.

    Just wanted to warn you guys to not let Madwolf get wind of this theory on "small town docs".

  5. Mikie

    Mikie Moderator

    You can find one who is willing to learn and who will work with you. It means you will have to do all the work of researching our illnesses and treatments, but we should be doing that anyway. The people who have gotten better here are those who have taken responsibility for their illnesses.

    My PCP admitted to me that he knows nothing about CFIDS and FMS, but he appreciated all the material I gave to him. Between us, we came up with a treatment plan and it has really helped me. When I finally found a specialist who is knowledgeable, he told me that what my PCP and I have been doing is perfect and that he would have treated me exactly the same way himself.

    If y'all could have seen me 2 1/2 years ago, lying in bed most of the time, taking Morphine for my pain, you could see how effective my treatments have been.

    I've been sick going on 13 years now and I have both CFIDS and FMS triggered by a mycoplasma infection which has gone stealth. That's a long time and most docs don't believe that the chances are good for someone like me, but they are wrong. Do everything you can to learn about our illnesses, be patient, never give up, and stay positive. A little bit, OK, a lot, of stubborness is helpful too.

    Love, Mikie
  6. tulip922s

    tulip922s New Member

    I sure didn't mean to step on any toes, especially Madwolf. I believe he is a true credit to his profession.

    I have done a search on the good doctor list on this site and none are in my area. I have also gone through 3 printer cartridges printing off information that I have taken to my doctor's visits.

    I think yesterday I was having one big ole pity party,,,had a horrible day, out of bed time was less than an hour. I want to get better,,,,yesterday!

    I have found a doc in this area who may assist me in the antibiotic therapy,,,,trouble is I won't see him for another 6 weeks.

    I would sure like to be close to one the docs I'm always reading about that are cutting edge with this illness. Have been talking it over with family and perhaps I will fly to one of these physicians. My out of bed time is so limited that driving would be out of the question.

    Best of luck to all. Tulip