October 30, 2011
yesterday i asked the expert panel a question about the uses of teasel root and colloidal silver in treatment of complex lyme. it was one of the first questions answered! in a later post i’ll address some of the great holistic, natropathic and herbal bits i learned. all three of the questions i submitted during this conference were addressed in this forum. this was exciting to me, of course, because i wanted to hear the answers, but it also seemed significant that in a room full of doctors, the questions posed by a patient were among the first to be asked. makes me think that we need to really overhaul our patient-doctor communications beyond the exam room.
in today’s final expert panel, i asked this question:
how do you proceed with a patient who has a recent diagnosis of lyme co-infections and a 15 year history of severe autoimmune diseases (mixed connective tissue disease, lupus, scleroderma, sjogren’s and more)? consideration- 14 years of intense immune suppressive therapies and constant prednisone use.
this is a complicated question. predinsone knocks everything down. if this patient came in, we’d have to be sure that there is lyme. rheumatology does have their own diseases. (<–that was a joke.)
then he was interrupted by dr. daniel cameron, who is the practitioner i introduced myself to in the hope that perhaps i could continue my care with him when my doctor’s practice goes private. he started talking about pregnancy, which was completely unrelated. honestly, i was so interested in what dr. jemsek had to say that i had trouble concentrating on dr. cameron’s response.
dr. jemsek uses unique and incredibly aggressive treatments for his patients. he’s featured in the documentary, under our skin, as mandy’s doctor. though her treatments nearly take her life four separate times (something you won’t see in the film), she has come so far that you would hardly recognize the person from the film. dr. jemsek is incredible, an inspiration, and has fought to continue practicing after being charged with unprofessional conduct and having his license suspended for a year.
the remaining panel participants had this to offer:
we have to always watch for the infection focus. consult with rheumatologist. look at the balance. look at adrenals. use quercetin. it’s very effective for overactive immune systems. always look at gluten. even if you’re not gluten sensitive, it’s so disruptive to the intestinal track, it’s shown that you can cut 5 years off your life and increase your chances of getting autoimmunity. glutamine is effective for healing a leaky gut. butyrate is a good compound to heal.
after the panel discussion had ended and the conference had come to a close, i approached dr. jemsek.
“i just wanted to tell you how grateful i am that you read my question. i’m the person who asked the question about the autoimmune diseases and treating co-infections. i’ve followed some of your work and was really interested in hearing what your thoughts were on how to approach my treatment,” i said. we talked a little bit about my diagnosis.
“i know this is a long-shot,” i told him. “but is there any way you’d be able to see me as a patient?” he got out a pad of paper and a pen and told me to write my information down. “it really helps if you have a referring physician,” he said.
“my doctor is here and will absolutely give me a referral.”
dr. jemsek’s treatments are intense and long-term, so he asked me where i lived. “i live in new york, but i have a lot of friends in d.c.. i will work something out if it means i can see you.”
“let’s set something up,” he said, shaking my hand.
i’m so, so excited and so, so nervous. i know that with real treatment there are a few considerations. one of those is the cost. this is not going to be cheap and i’m already trying to figure out how i can get a medical loan. the second goes back to the herxheimer reaction. i am going to get worse, much, much worse, before i get better. i listened to some of dr. jemsek’s protocols and know that if he does take me as a patient, i’m in for a couple of years of graded therapies, some of which can be phenomenally dangerous and all of which will be painful. but there’s a silly little saying i learned about fear: Fuck Everything and Run or Face Everything and Recover.
suffering be damned, i’m going to recover and i just might have landed one of the best doctors in the world to help me do it.
(also, i want you to know, i feel really, truly lucky right now. <3 )