my records from "the best" lyme expert in our area


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Posted by carolyn on 01/14/02 - 20:52:09
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i posted an article on friday illustrating what they are putting in the media about lyme and tick borne diseases.  nasty diseases that ruin lives and can kill.  i went to this dr when i ws very sick with both lyme disease and babesia.  dr x in the artical is dr kelly.  dr y is dr niemans.  niemans is who i was reffered to.  in our area, about 1 in four people have this disease, but most are undiagnosed or misdiagnosed.  ordinarily i would not post my med records, but i already sent this as part of a packet to the legeslative assembly in albany as part of public record.

associates in infectious disease
roger e niemans, md
john j kell, md
robert r dee, md
todd i braus md

ronald eisenberg, d.o.
benjamin fox pavillion
jenkintwon pa

dear ron, thank you for asking me to see your patient, carolyn      . carolyn is a 39-year-old woman who believes she suffers from the afftereffects of lyme disease.

she diveloped a circular rash of some sort on her foot in the summer of 1996. she believes this was the rash of lyme disease and it may have been although it ws uncharactaristically itchy for the rash of lmye disease.  whatever it was , she had other theings of her mind and wasn't paing a lot of attention to it and it went away.

she then developed a febrile illness in sept of 1996 and stayed in bed for a while.  in nov of 1996 she was rear ended while driving her car and developed some symptoms after that .  these included neck stiffness.  she also had another febrile illness and began to feel rundown.  this was followed by another febrile illness and she was treated for an ear infection.  she apparently has had recurrent ear infections, always in the right ear, although the situation is somewhat confused here in that she says that she also has "tmj" on the right side.

at ane rate, she has seen quite a few subspecialists, neurologists, and neuroophtomologists.  i do not beleive that she has recieved any satisfaction from these physicians.  in 1997 she stopped going to doctors because of dissatisfaction.

in the spring of 1998 she had an illness with a sore throat.  she also had a fever with this.  this problem was followed by insomnia.  she also had some right ankle pain when she would walk on it alot.  she also had bilateral arm and leg pain an dstiffness in her neck area.

friends told her that beause of these symptoms she had lyme disease.  she saw her internist with these complaints of stiffness, pain and headache and he told her that she probably had fibromyalgia more likelly than lyme diseae.  however, she began to read about fibromyalgia and decided that she did not have it.  she also says that her eyes are "out of alignment"  although the records i have suggested that her neuroopthalmologic exam was actually very good and her eyesight was excellent.  never the less, another clinician has told her that her eyes in fact are out of alignment.

in sept of 1998, she had a persistent swelling of he r neck gland and saw her internist again.  he thaought that she was depresed.  she continuse to see various physicians.

at her father in law's urging, she saw a physician who is a general practitioner who is also a self descibed expert in lyme disease.  he treated her with a variety of antibiotics including azithromycin, doxycycline and biaxin.  she also saw another so called expert in lyme disease who treated her with a course of six weeks of intravenious rocephhin.  prior to this course of rocephin she had tenderness of the scalp but this improved after rocephin.  however, she still ahd other problems, particularly including pains in her arms.  she continues to see the "lyme expert"  in newtown and had testing done at a laboratory in california.  this laboratory did a non-fda approved test, the "lyme urinary anten test,"  which is of no known scientific valus.  on the basis of these tests he told her that she did indeed have lyme disease as he had told her previously.  she continues to see other phsicians including a neurologist and ultimately was sent to our office.

at the present time she is not taking antbiotics, which is fortunate.  she does take some pain medication which helps her headache but doesn't help her arm pain.  she also takes a medication to help her sleep.  she is allergic to sulfa which produced a blotchy rash.  on exam in my office, she was a nontoxic young woman in no acute distress.  she did not have a fever.  her neurologic exam was within normal limits.  the rest of her physical exam was also within normal limits including no evedence of joint inflammation or rash.

i actuall did not have a lyme serology in the voluminous records which she brought to my office although she tells me that she has had them checked and they were negative.  the only "lyme test" that i had was the scientiffically illegitamate lyme urinary antegen test.

on the basis of her current symptoms, i believe that she does not have active lyme disease although it is possible that the rash on her foot in 1996 was lyme disease.  however, no physician saw this ras and we don't have a picture of it.  if it was lyme disease, she certainly has been treated and overtreated many times over for the problem and she and i agree that no further antibiotic therapy is in order.

she wanted some advece as to what to do with her arm pain but i told her i was not qualified to discuss tratment of arm pain and reffered her to a neurologist.  she also has plans to see a rhuematologigst which is probably an excellnt idea.  based on this information that i had from her one haour visit to my office and the voluminous records which she brought in, i am unable to support a diagnosis of lyme disease and certainly do not reccomend further antibiotic therapy at this point.  i would be happy to reevaluate the situation should the need arise.

sincerely,
roger e niemans,
md
chief, division of infectoius diseases
abington memorial hospital.

two weeks later on 12-14-1999  my neurologist did a pcr of my spinal fluid at BBi labs in CT.  it came back pos for lyme disease.

i had a recrring rash on the top of my right foot form the 1996 bullseye at th time of the appt.  

i since have several more pos pcr tests as well as lyme specific bands on my westrn blot.

upenn nurse recorded the 1998 bulleye on my back as a bite in my records.

last year i noticed for the first time a bullseye rash on my leg in vacation photos taken in nantucket island in 1991 whaer babesia also rns rampant.  i also may have photos of the rash i got when we returned to nantucket in 1993.  haven't developed all the rolls of film yet.

finally tested for babesia last summer and tested positive.  in the article they said they had never seen a case of babesia in pa.  well the y saw me 6 mos earlier.  patients with babesia as wee as lyme get a lot sicker than those with just lyme.


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