posted
hi all, i was wondering if anyone had any experience with the miriam hospital lyme clinic in providence RI? some background- my western blot came back negative (just sent to a local lab), my babesia IGG and mycoplasma IGG came back positive, and i also came back positive for chlamydial pneumonia. i am already being treated w antibiotics but my dad wants me to get a second opinion, and his gp recommended going there.
Posts: 1 | From United States | Registered: Jul 2015
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posted
Welcome to Lymenet! PM sent for another clinic in RI which comes highly recommended.
I have not heard of the Miriam Lyme Clinic in Providence, RI.
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.
The website for this clinic did not tell me much other than the hospital's infectious disease doctors are involved. Even if they mention "chronic" most ID doctors are not trained nor have the ability to treat properly within a setting such as they have.
But, as the detail was sparse, I hope you get some replies. Talk to ALL the lyme support groups within, say, a 200 mile radius from that clinic and from you.
Bottom line, though, it will be best to find an independent ILADS educated LL doctor.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: chlamydial pneumonia, many LLMD also treat Cpn and the treatments are similar to that for lyme. Not all strains are necessary chronic but some are. If I recall correctly, the test would be an IgA.
Institute for Molecular Medicine - Garth Nicolson, PhD (researcher, does not treat)
He is the premier researcher in the area of chronic stealth mycoplasma infections. Dr. Nicolson has given many presentations at ILADS conferences and is well respected among LLMD and LL NDs for his research and concern. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
PM Sent!
Posts: 1487 | From New England | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks to BettyG who is over at MDJunction / lyme. She emailed me to help you out.
This confirms my hesitancy with this clinic. It looks like it is solely IDSA oriented. And, very limited treatment, with no mention at all of coinfections.
That they firmly believe in "Post-treatment Lyme disease syndrome" confirms this is not a place that is going to assess and address properly. Not. They do not even understand how borrelia does what it does nor understand how to treat it.
They do not offer full combination / rotation and cut off the time limits for treatment.
Also no mention of addressing the cystic, L-form, blebs, etc. The other forms require different kinds of medicine.
. . . . For localized disease with only skin involvement, treatment is 14 to 21 days. For more disseminated early disease including Bells’ palsy, meningitis, carditis, and arthritis, treatment is 14 to 28 days.
In these instances, involvement with an infectious disease specialist is recommended to determine need for IV versus oral therapy, and to determine length of therapy. . . .
. . . In Lyme arthritis, sometimes a second 28-day course of antibiotics is needed for refractory disease. In all other presentations, one course of antibiotic therapy is successful in eradicating the infection.
However, symptoms can persist beyond the treatment course in some individuals.
Post-treatment Lyme disease syndrome occurs in about 10 percent of patients with symptoms continuing beyond six months from treatment including fatigue, joint pain and headaches. . . .
[Full article at link above.
Again, some huge errors in that, especially their faulty thinking that such an inadequate plan will fully "eradicate" this for most. That has not proven to be true for most.
Then, they would dump those who were still ill into the "Post" lyme syndrome trashbasket. A huge mistake. Huge.
So, please, be sure to also then read the www.ILADS.org information for the real truth about lyme. And / or www.lymedisease.org ] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
[This addresses all the points that many ILADS educated LLMDs know are vital to success. Doctors connected with IDSA would not be on the same page at all, sadly.]
The Global Search for Education: The 300,000 - Tick-Borne Disease
Interview with Author (of book above) - Nov. 9, 2013 -
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I think these might be two different places.
You have to be already diagnosed with Lyme disease and be referred to them by your doctor to go to the Miriam Hospital Clinic.
Here is the info on the clinic:
The Miriam Hospital 164 Summit Avenue Providence, RI 02906 401-793-2500 | Email Us
University Medicine is a very large group practice, with offices all over the area, and whose members have privileges at the area hospitals. The piece on Lyme disease was written by one of those doctors.
University Medicine 17 Virginia Avenue Providence, RI 02905-4406 1-877-771-7401 [email protected]
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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