I am looking for a competant physician here in Oklahoma. I was previously diagnosed with early stage lyme back in 1999. Both positive titer and western blot. I was treated at that time with a 30 day course of Doxycycline 100mg. b.i.d. In August of this year I began having very troublesome symptoms including arthritis, muscle aches and pains, extreme fatigue, both the most troubling were a series of cognitive symptoms such as short term memory loss, difficulty in concentration, mental fog, severe headaches,and other symptoms that have me concerned about encepalitis. I was referred to an infectious disease specialist in the area who did test for co-infections that all came back negative. The problem is that all the screening tests such as titer, PCR, western blot, etc. have come back negative also. There was an MRI done approximately two months ago which showed non-specific white matter changes which I understand can be a very telling symptom for disseminating neurological lyme. My physician and the radiologist who read the scan attribute this to minor ischemic small artery disease which is common in someone my age (58). Since all the tests have been negative my physician is not willing to make a clinical diagnosis and I am left with no help. I was a previous professional pilot who lost my job approximately three months ago due to this problem. I have even placed other posts on other sites trying to find LLMD's in the area with no results. Please note that I am willing to travel now but have not found any physicians in a 300 radius including OKC area, Tulsa, Dallas/Ft. Worth, or Wichita. I am just about at the end of my rope here and would appreciate any help anyone could render. Thanks. Stan
Posted by Ann-OH (Member # 2020) on :
There is a support group in Edmond OK, I believe. If you go to the menu on your left, and click on support groups, you will find your way to the Oklahoma support group.
Hope you find the help you need. Ann - OH
Posted by Lymetoo (Member # 743) on :
I'm from No. West Arkansas orginally. Moved to Dallas Metro-Plex area to be 1. Married 2. closer to my LLMD. From the research I've done since 2000, you have 2 options. Dallas or Springfield,Mo. Lymetoo can give you her doc., I can give you mine in Dallas. e-mail me personally at [email protected]. Hope you get well soon. My husband and I are 5 yrs. and counting--the disease, the antiobiotics, the marriage--in spite of the fact we didn't stay at a Holiday Inn Express last night.
Posted by just don (Member # 1129) on :
Stan the man, Better listen to the two previous posters to ME. They are ALOT smarter than me. See I told you so. Go to Lymetoo's docs web site and you can see how he thinks and treats people. Number 1 reason people dont like to travel to experts from afar is the fear of the 30 second office visit that costs $500. bucks. Well, you WONT get that at Springfield, let me assure you of THAT!!! Otherwise maybe the Dallas one but dont know 'anything' of that one. Click the link two posts up and follow your heart!!Cuz I still Be --just don-- There I go again!!
Posted by Aligondo Bruce (Member # 6219) on :
quote:Originally posted by Stan: I am looking for a competant physician here in Oklahoma. I was previously diagnosed with early stage lyme back in 1999. Both positive titer and western blot. I was treated at that time with a 30 day course of Doxycycline 100mg. b.i.d. In August of this year I began having very troublesome symptoms including arthritis, muscle aches and pains, extreme fatigue, both the most troubling were a series of cognitive symptoms such as short term memory loss, difficulty in concentration, mental fog, severe headaches,and other symptoms that have me concerned about encepalitis. I was referred to an infectious disease specialist in the area who did test for co-infections that all came back negative. The problem is that all the screening tests such as titer, PCR, western blot, etc. have come back negative also. There was an MRI done approximately two months ago which showed non-specific white matter changes which I understand can be a very telling symptom for disseminating neurological lyme. My physician and the radiologist who read the scan attribute this to minor ischemic small artery disease which is common in someone my age (58). Since all the tests have been negative my physician is not willing to make a clinical diagnosis and I am left with no help. I was a previous professional pilot who lost my job approximately three months ago due to this problem. I have even placed other posts on other sites trying to find LLMD's in the area with no results. Please note that I am willing to travel now but have not found any physicians in a 300 radius including OKC area, Tulsa, Dallas/Ft. Worth, or Wichita. I am just about at the end of my rope here and would appreciate any help anyone could render. Thanks. Stan
Hi stan. I live in stillwater. I acquired this disease in the northeast but am stuck here living in the same town as my parents for the time being. The missouri guy would be a good bet. I see docs on the east coast. these are my suggestions for you. However equally important will be finding a doc locally who will work with your LLMD consults. you may have to find a new GP.
Do you mind me asking what the symptoms you experienced initially, meaning, when LD was diagnosed, were? also, you might want to consider getting your B12 levels checked, this is sometimes an indicator of late LE.
Late LE is a very serious condition. Most docs in Oklahoma haven't a clue about this disorder, or the attendent controversies. Don't hesitate to ditch your GP if he or she is not willing to understand what is really going on. Also I reccommend contacting the edmond support group. I'm not really a part of that right now but they can help you.
Do you know the individual bands on your western blot? these tests are terribly unreliable and were designed to be highly restrictive for epidemiological research purposes and also to help qualify a vaccine {since pulled from the market} which otherwise would not have been qualified.
also, have you had a spinal tap? it's important to rule everything else out in the case of LE for which there are no reliable tests.
Posted by Lymetoo (Member # 743) on :
Hey Bruce....what's LE?? Lyme Encephalitis??
Stan....hope you called the office in Springfield.
![[bonk]](graemlins/bonk.gif)
See I told you so. Go to Lymetoo's docs web site and you can see how he thinks and treats people. Number 1 reason people dont like to travel to experts from afar is the fear of the 30 second office visit that costs $500. bucks. Well, you WONT get that at Springfield, let me assure you of THAT!!! Otherwise maybe the Dallas one but dont know 'anything' of that one.