Topic: Seeking LLMD: Ohio, Kentucky, or surrounding areas
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I am in pretty desperate straits at this point, so any help would be very appreciated.
I am currently in Columbus, OH but understand that I may have to travel a good distance to find a good doc. My husband and I plan to move back home to Louisville, KY someday soon, so a doctor there would be a boon, but I know better than to expect that. Again I am willing to travel, though I have been housebound for the last 2 years off and on.
Symtoms and background:
I have been sick for over 10 years, off and on, with the last 2+ years getting much much worse. In 2005 I had a clinical diagnosis of FMS from a Rheumatologist, with a second opinion corroborating the diagnosis a year later. This spring I was diagnosed with Rheumatoid Arthritis from a second Rheumatologist, with RF negative - clinical observation only so far: redness, pain, stiffness, visible swelling and joint movement changes, chills, with chronic low-grade fever when not running a below average temp. Thirdly I was told by an Infectious Disease specialist that I "probably had" CFS, was given a "pep talk" (his words) and then was refused treatment/denied the testing I was referred to him for. My understanding primary care doc agrees that there is something physically wrong, but he is out of his depth with this - he has told me and my husband as much.
I have had a Lyme test a few years ago, with a previous primary care doc during one of my symptom flares, but I do not recall which version it was - it was before I knew the difference. I am almost 100% certain it was not Igenex, as my husband was later tested neg. by the same doc and it was not Igenex. I also do not remember what my results were (bands etc.), other than the GP did not ascertain that I had Lyme, for whatever it's worth. I am going after my medical records this coming week.
My background with as many vector possibilities as I can fit here: I am 34. Years ago I used to spend a great deal of time camping, climbing, and hiking in mountains and woods, in KY, OH, MI, TN, WI, WV, NC, KS, UT, CO and in Algonquin Park, Canada, and have had plenty of experiences with tick bites, long before I knew of Lyme. Never had a rash that I recall. I spent a semester in England in 1994. From 93-96 I worked with a wildlife rehabilitation group in KY while in college - mostly raptors. I was exposed to a flea infestation in a rental apartment off campus in a couple of instances in 95 and 96. In 1996 I had a mysterious and serious illness that ruined my last year of college. The local docs and hospital staff guessed that I had "cat scratch fever" but I do not recall that they ever had a definitive test. I was bedridden and had a very high fever for weeks, and my lymph glands were the "size of tangerines" according to the startled radiologist. I could not walk from the pain. I don't remember ever being given any antibiotics or treatment other than large Cortizone injections to take down the swelling in my lymph nodes, and pain medicine so that I could walk. That whole period of my life is a blur, and I've never felt "normal" or "well" since.
My symptoms line up almost word for word with the general Lyme symptoms, but they also track with CFS, RA, FMS, and possibly Bartonella - though I haven't found a description of chronic infection symptoms for this. One symptom that I never see listed for any of these though is intense deep bone pain, which I have also been experiencing off and on, since around 98. I recently had an episode of ECG heart abnormality, breathing trouble, and CNS symptoms, that sent me to the ER for a 24-hr period. I waited 5 days before going to Urgent Care, where they did the ECG and sent me to the ER.
I'm sorry for the long-windedness, but I understand the need to have as much info as possible to help new members. I am happy to answer any questions to that end. Thank you in advance for any assistance.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I believe those are all lyme symptoms, and it sounds like you have been through the ringer of misdiagnosis.
I am not familiar with your area. Until someone comes along, you could search support groups on the left side of this page, to see if there is anything available in Pa.
Some Ohioans do travel to MO to see Dr. C.
Also, recently, if you do a search for Tennessee, someone has been posting that there may be a dr. there. You could pm them, if you find the relevant post.
There are some posters from Ohio, so maybe they will come on line to see this.
Good luck...I know there are llmd's out there for you. And I do think you are on the right path.
North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Thank you for your reply and good wishes, North. I had planned to try to contact the Ohio Support group tomorrow during regular hours, and now will also look into any PA groups. I may end up needing the doc in MO, will wait and see.
posted
Hi Nenet, If you don't find a LLMD close to you soon, I can send you info on the LLMD I see in Sikeston, Mo.(just south of St. Louis). He & Dr. C in Mo worked together for several years and I really like him. He seems very knowledgeable.
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
nenet, sorry but if there is a lyme literate MD in Louisville, I'm not aware of them. I used to go to Springfield Missouri for 2 yrs for that type treatment. I would recommend him.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Thank you artraveler map1131 and northstar.
It's beginning to look like I am out of luck for my general area. PA is much closer than MO, but I keep seeing that if you're a woman you should be wary of a certain doctor in PA. If I have to I will travel the 400 miles each way to MO, but I am housebound and get very sick when I overextend, so I have to make it count.
If anyone is aware of the Ohio region and possible docs (I am smack in the middle of the state) please do let me know.
Thanks again for your help - I understand it's slim pickins in this arena. I know I'm lucky that I have this resource at all.
posted
Sorry, I'm in Ohio, but I travel to NY. I don't know how my husband managed to get me there back in January! But last week I managed to go without him and take my 14 year old daughter with me. That's drastic improvement. Do whatever you need to do to get proper treatment, it's worth it.
We fly into La Guardia, then it's a 2 hour drive to where the doc is. If you're interested in his contact info, let me know.
BTW, I contracted Lyme in Dayton ... saw plenty of ticks, but never a rash. This was 35 years ago.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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