i just posted the Intellgencer article where kelly , chief of medicine Abinton hospital and his partner roger neiman are quoted and put down our drs who are willing to give us the long term treatment we need and treat the coinfections we often have.it is under my post "what i have can help IgeneX" my story is long, so if you just want to read the article, go down to just below where i edited the post on July 10. i will post my full records from nieman on a reply to that post.
i had seen nieman 6 mos before that article came out and had full blown Lyme as well as babesia at the time of the visit, along with the recurring rash on my foot from the '96 infection and he refused treatment.
i posted my long story above that so it may get very tedious to read, but if you scroll down to where it says i edited the post, i posted the Intellegencer article there.
here is what nieman had to say in MY medical records about dr G, the competant dr who diagnosed me with Lyme disease in early 1999, after 8 yrs and 4 untreated infections.:
"At her father-in-law's urging, she saw a physician in Newtown who is a general practitioner who is also a self described 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 intrvenious rocephin. However, she still had other problems, particularly including pain 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 antegen test," which is of no known scientific value.
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 physicians including a neurologist and ultimately was sent to our office."
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i will type the whole records in my post regarding helping Igenex with my photos and records. two weeks after this appt, i tested pos by pcr of my spinal fluid from BBI labs. i also have pos pcr's now from MDL and Quest. i have a CDC pos Igm western blot ( but still did not qualify to take part in the NIH study dr Fallon was doing.)
i also, when a dr finnally did the western blot for babesia from MDL, both Igm and Igg robustly pos. it was so obvious i was acutely ill with Lyme and babesia when i saw dr G and even after some treatment still had obvious active infection. i had not been treated for babeisa, or even tested for it.
dr G never represented himself to me a a "Lyme expert". he was reccommended by other lyme patients who were helped by him, and before he got burned by area drs and insurence co's, he used to advertise that he treated lyme and took patients right away. ( not making them wait two months and get sicker and sicker in the mean time like the upenn dr did. and then waiting another month before treating.)
dr G also did not dx me with Lyme on my first visit. he emphasized the need for me to have the LUAT test done at IgeneX labs. the UPENN dr had lead me to believe he had done the LUAT test, but did not have me send a kit myself to IgeneX or follow the protocol of the IgeneX test.
only after the LUAT came back highly highly pos did Dr G tell me that i had acute, late stage lyme disease. whatever Lyme test the upenn drs initially did was pretty useless. it came back neg despite me being so obvious and seriously ill. i think it was an IFA.
i later figured out that upenn dr never did any form of the LUAT what-so-ever. just lead me to believe that he did and lied and said the LUAT had come back neg also, thereby reinforcing that i did not have lyme.
dr G. had me on zithromax only for a few days for the purpose of helping the LUAT to detect lyme antigens. his partner put me on doxycycline, usually the first choice to treat as it will kill the erlichia too if present.
my neuro symptoms were so bad that dr G put me on Biaxin which partially brought my brain back. the neuro he sent me too did not back up his lyme dx, so dr G sent me to a "certified" infectious disease specialist, not another "so-called lyme expert" as nieman wrote in my recoreds. an i.d. specialist just like him.
the i.d. specialist agreed that i had a severe case of neuro lyme when i first saw him and he immeadiately put me on i.v. rocephin. when after 6 wks blue cross/ blue shield would not pay for further i.v. treatment, the i.d. specialist exploded at me , screaming that no one has lyme anymore after 6 wks i.v.. the severe pain and severe symptoms were "in my head". and literally threw my LUAT results in the air calling them useless!
and he sent me to church to get down on my knees and pray. he did give me a script for more biaxin, when crying in pain, i knew i was still VERY sick and unable to function. i had two small children. who i later learned have lyme also.
after that, dr G was unable to treat me as the neuro and the i.d. specialist would not support his dx, the "great" upenn drs found "nothing" neuro wrong and to further treat me would likely lead to his being charged with "over diagnosing and overtreating". so he gave me a list of drs.
most did not take insurence, but the neuro on the list did so i went to him. he for the most part did not treat me, did not test for babs even though i stronly suspected it. spring '2000, i am pretty sure is when i found photos of me with the textbook bullseye rash dating back as far as sept '91 on our vacation to Nantucket Island.
the neuro did not know i was going to see nieman and just before, had done a spinal tap and had my spinal fluid tested by pcr and it came back pos. the results from that pos pcr of my spinal tap i recieved just two weeks AFTER seeing nieman and him calling the LUAT, my only pos up til then "of no known scientific value".
it would be another 6 mos after the pos pcr of spinal fluid before BC/BS would OK a few more weeks of rocephin and then cut off my treatment again leaving me feel hopeless.
i was also seeing Dr Sergott at Wills eye hospital. Dr Sergott is not well educated about lyme, never-the-less, he is a good eye doctor and did the exam seriously instead of just laughing and not really doing an exam as upenn neuro-opt did. upenn found "nothing" neuro wrong, but dr Sergott did find that i was having trouble controlling my eye muscles and reccomended further treatment for my chronic neuro lyme disease.
i had also seen a sleep specialist who dr G sent me to and his partner who did not help me and put damaging stuff in my records.
Dr G also sent me to a rhuemie , who lets just say was creepy, and i had a very good reason not to go back to him.
i needed to see other specialists, but was not. i still need a good G.I specialist, OB/GYN and general practitioner. as you can see, i need to be very careful who i go to as many drs just abused me, refused medical care and put lies in my records to interfere with me getting med treatment in the future.
i ended up at nieman's office, because a dr friend of my in-laws claimed for him to be "the best" lyme disease expert in the area and i was still suffering so badly. you would not leave an animal in that condition. i think we know different now. and nieman did represent himself to me as a "lyme expert".
i also, after a dr finnally ordered the brain spect scan at Columbia Presbyterian Hospital in NYC, have an abnormal brain spect scan showing blood hypoprofusion, white matter lesions, and encephalopathy consistent with Lyme encephalitis.
and, after learning from this website from another woman just a few yrs older than me, that many woman who have been ill and untreated for late stage lyme for yrs go on to suffer bone deterioration and she was just dx with severe osteoporsis and was only 44.
this was a few yrs ago. because of how loudly my bones cracked and how little i had been able to eat so little, i had asked the upenn internest to do a bone scan. he refused and laughed and said i was much too young and would not order the test.
well, when a dr finnally did do the bone scan it revealed severe osteopenia. there are drugs to stop and even reverse bone loss. upenn could have caught this several yrs earlier, if they were as knowlegable about lyme as they alleged to be.
[This message has been edited by Caryn (edited 11 July 2005).]
[This message has been edited by Caryn (edited 11 July 2005).]
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