Topic: Lyme Disease--Boston hospital leader in treatment?? Any info??
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Um, has anyone heard about this or does anyone have details?? I didn't see anything about long term antibiotics, mHBOT, etc. mentioned in the therapy unless I missed it. Hmmmm . . .
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
I would never trust a standard hospital treatment center.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
That has been my experience as well, Lymetoo. I'm wondering "why" this place just popped up on the radar/the "motivation" behind it.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I was concerned about the same things and didn't give it a second thought as far as being of help to us. BUT, just recently I've been following conversations about this place.
From what I understand it is a place to get the care many of us need and we don't get at a LLMD's office. They will work with your doctor.
Here is an article. It appears the one running the place (Dr. Z) is up against a brick wall, but is making progress.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"The Dean Center for Tick Borne Illness will treat patients who have chronic symptoms and who seek recovery and rehabilitation therapy.
Clinicians on staff currently include two physicians, a mental health counselor, and a case manager.
The goals of the Dean Center are to improve the care and function of patients with Lyme Disease and other tick borne illness by focusing on individualized treatment, ongoing education, and emerging science."
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
They could say they have a 100% cure rate. If you improve, they take credit. If you continually decline under their watch, they'll say it's something else.
posted
I live in that area and had an appointment to be treated there awhile back. On the phone, I was told that they do not prescribe antibiotics or other various prescriptions but what they specialize in is rehabilitation and connecting you with the right people.
For example providing you with referrals etc. I cancelled my appointment because I needed treatment, not rehab at the time.
Here is the article in the Boston Globe that I had read at the time:
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Very good feedback. I'll try to remember this place along with regards to the fact they don't recommend abx if people ask about it. Thanks to all.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
It was started by someone very active in the Lyme community I believe. It's more of a place for managing your symptoms and working with your LLMD, not instead of an LLMD.
Posts: 133 | From North Shore | Registered: Sep 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
They very much DO recommend ABX long term! My doctor there does not prescribe them for me because she is a medical doctor who specializes in sports medicine and rehabilitation - not an infectious disease doc. But she has lived the Lyme nightmare and gets it.
They do many blood tests right there and as a result of this, we discovered I tested positive for borellia miyamotoi! The doctor I see there contacted my LLMD right away and recommended long term IV ABX. She also tried to advocate for me, very aggressively, with my insurance company when they refused to cover more than one month of IV ABX. My LLMD did not even do this. I felt very lucky to have her in my corner.
She now feels I should give IV ABX another try because we did see some improvement, but I am not well yet. She has discussed this with my LLMD. She has also prescribed medication to improve sleep and made referrals for vestibular rehabilitation, recommended supplements to reduce inflammation, and explored with me alternative therapies to reduce lingering and debilitating symptoms.
Their doctors are trying to educate the mainstream doctors and the public about how debilitating this illness can be if not treated soon or long enough. They are doing an incredible job of advocating for us! They have spoken before the MA Senate and House supporting our Lyme treatment coverage bill, which is the closest it has ever been to passing.
I feel lucky to have the additional support of my doctor's advocacy and insight to help me get through this nightmare.
Posts: 2386 | From New England | Registered: Aug 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
This is also great feedback. Thank you!!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- dbpei,
Thanks so much for your detailed reply. I deleted my misinterpretation after hearing of your personal account.
It sounds like they are doing the best they can right now, considering the limitations for those who directly treat the infections. Hopefully, they will be able to expand more fully in the future. Glad you found them a good resource for your needs.
That you say "Their doctors are trying to educate the mainstream doctors" . . . this is very hopeful, indeed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
They have an uphill battle, but they are doing a phenomenal job. I believe they are the first clinic in the country to help people suffering from 'chronic lyme'. I am so grateful for their support and guidance.
Posts: 2386 | From New England | Registered: Aug 2011
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