posted
Hi everyone, I am new here and am finally puttimg all the pieces together.
Lyme since 2012, which led to a traumatic brain injury, mast cell problems, NK cell deficiency, chronic herpes simplex (every day for 7 years) and what looks to be CIRS.
I'm looking for a doctor in CT who can treat both the Lyme/CIRS/mast cell aspects of the disease. I need a doctor who can address these issues at the same time bc I am HLA-DR multisensitive and many standard antibiotic treatments put me in the hospital due to biotoxin issues which may be autoimmune and usually attack my CNS. (Hence the TBI).
Due to being high risk for COVID-19, I cannot travel out of state currently, but am willing to travel once the pandemic ends to the tri-state area: NY, NJ, RI, MA, or even NH, so if there are doctors who participate in telehealth or are highly recommended from these areas, please let me know.
I have Anthem POS with out-of-state coverage for insurance.
Thank you so much in advance. I feel like a human petri dish at this point.
I hope everyone is staying safe and healthy during the pandemic.
Posts: 1 | From CT | Registered: Oct 2020
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lymenet ComplicatedChart. Love your log-in name, we can certainly relate. So glad you found us.
Some LLMD's will provide you with a super bill that you can submit to your insurance for reimbursment.
Your 1st visit with a LLMD will be the most expensive and the longest in duration. Lab tests will be numerous. Here is a resource to help with blood test costs; http://whatislyme.com/assistance/
Please utilize Lymenet's 'search' function located in the middle of the page. It contains patient's personal experiences with diagnosis, treatments, and successes. Lots of research links provided to help us all become our own healthcare advocates. Please feel free to post any questions you may have on Lymenet's open forum and a member will respond. We are all in this together.
Be sure to research all LLMD's that are refered to you. To do this, Google for patient reviews or join your local Lyme support group. Lyme support group members LOVE to share their experiences with your area's LLMD's. Look up the nearest Lyme support group to you here; https://rawlsmd.com/lyme-support
Healing wishes on your health journey. I will send you a private message.
Posts: 2977 | From Florida | Registered: Nov 2016
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I don't know of a LLMD who specifically treats mast-cell/CIRS problems, but am sending you the name of a couple of good LLMDs in CT who might be able to help you. Don't think they take insurance, though.
Here is a good ongoing Lymenet thread about "Mast Cell Activation Disorder" you might find helpful:
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H. titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get them at your local library or buy them used online.
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