posted
There is a hospital in Rhode Island that is now seeing patients with Chronic Lyme and co-infections and they accept insurance. This is very encouraging. ---- Hospital starts clinic for patients with chronic Lyme
By Arline A. Fleming/Independent Staff Writer
SOUTH KINGSTOWN -- For several years, doctors and infection control specialists at South County Hospital have discussed the idea of starting a Lyme disease clinic to serve patients with complex health issues not responding to traditional treatment.
According to Lee Ann Quinn, manager of South County Hospital's Occupational Health Services and Infection Control, the discussions led to surveys sent to primary care physicians asking if they would support such a venture.
A feasibility study was conducted, and conversations were held with the medical director of the Lyme disease clinic at Rhode Island Hospital, the only other clinic in Rhode Island of which Quinn was aware.
Now the hospital has opened its Lyme Disease Clinic and begun taking referrals from local physicians. Quinn said that the Friday clinic, held from 9 a.m. to noon and 1 to 3 p.m., is based in the hospital's Emergency Room, Area B. Patients will be seen by appointment only.
This isn't a clinic, she said, for the person who discovers a tick or bull's eye rash somewhere on their bodies and wants to start treatment for suspected Lyme disease. It's for the patient with a case so complex ``that they are not responding to therapies,'' Quinn said.
Chronic Lyme is the focus and not acute Lyme infection, she said. ``The primary care physicians are recognizing the need for another set of eyes.''
So once an appointment is set - and this clinic already is booked into mid-July - the patient will see Dr. Frederic Silverblatt, Dr. Jeffrey Bandola, Quinn and other staff members in what she said will be a substantial appointment.
``We'll take a very detailed history of the patient and spend a lot of time with them,'' Quinn said.
Quinn came up with the idea for such a clinic several years back.
``It's been my passion for a long time,'' she said.
``We were getting calls from patients asking for referrals because they had chronic Lyme and weren't getting anywhere. They wanted to be able to talk to someone.''
But she warns that it is not a drop-in clinic. Patients have to be referred by their primary care physician or an ER physician. Once the patient is seen at the clinic, Quinn said, ``we'll coordinate their care.''
Quinn said they got 51 responses to the survey of primary care physicians and specialists, with 33 stating they would refer a patient to a clinic if they had one. Of those surveyed, 20 said they were seeing an increase in Lyme disease, 21 said the numbers had stayed the same and three said it was lower, while some didn't respond to that question at all.
Quinn said she believes there is a greater awareness of tick-borne illnesses. Clinic physicians and staff recently offered a lecture about the symptoms of Lyme disease at the Neighborhood Guild, which attracted a substantial audience, she said.
The clinic, to offer comprehensive diagnosis and treatment for not just Lyme disease, but also babesiosis, ehrilichiosis and other tick-borne diseases, is for adults only, and all major insurance plans will be accepted and standard co-pays will apply.
To schedule an appointment, call 788-1486. Although the clinic will be open on Fridays only, calls to schedule an appointment can be made Monday through Friday, 7:30 a.m. to 5:30 p.m.
Quinn also suggests checking the hospital's Web site, www.schospital.com, for more information about Lyme disease.
[ 06-25-2009, 05:49 PM: Message edited by: MorningSong ]
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Keebler
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posted
- Here's the link to the clinic itself, in Rhode Island:
[ 11-03-2009, 11:48 PM: Message edited by: Keebler ]
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feelfit
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posted
they are all involved with the other side. Tracy9 did background searches on the docs over on her LymeFriends site......
I believe that this is the same clinic, I highly doubt that 2 could be opening at the same time.
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posted
Even if they are on the other side, is it a good thing that people can get medication and have it covered by insurance? That they are even willing to acknowledge chronic lyme is a miracle itself and co-infections is a step in the right direction.
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feelfit
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Go over on Lymefriends and read what was found. 2nd page in "discussion".
Seems that it is a set-up guided by IDSA to make them appear to be more caring....all the great info is there. And some inside info as well by those in the know.
Maybe Tracy9 will come along and post the findings in this thread.
Buyer Beware
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Shosty
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posted
This is in RI, not Florida, right?
The issue that the two "sides" disagree on is long-term antibiotics, so for those who want to get off, or do not want to be on uselessly for years and years, this might be of great help.
It doesn't sound like they will be demeaning and the fact that they spend so much time with each patient is certainly a sign that they recognize the complexity of things.
If they are truly somehow working under IDSA guidelines,then the emphasis on co-infections is surprising.
feelfit
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posted
One of the doctors involved in the new clinic is actually a presenter for IDSA in the upcoming Guideline fiasco.....read the available information and decide for yourself.
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posted
Changed original post to Rhode Island. Are they "allowed" to treat against their own guidelines?
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feelfit
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Shosty,
It says a comprehensive diagnosis and treatment of babesia, erlichia, and bartonella. I doubt that this means that they will be treating co-infections based on clinical presentation only. I also doubt that they will be treating chronic lyme without IDSA criteria being met (positive ELISA, WB).
Infectious disease doctors WILL treat co-infections if test results are positive.
Who knows, for some who cannot afford anything else, something is beter than nothing, I guess.
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TerryK
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Does not look good. Seems they have an agenda and it's not to help chronic Lyme patients get appropriate evaluation and treatment for chronic Lyme disease unless you consider IDSA propaganda to be correct.
Many do not have Lyme disease and require re-evaluation and re-diagnosis so that they can receive proper treatment for what they do have.
He spouts lots of IDSA bogus info in that article.
Let the steroids flow!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Shosty
Unregistered
posted
Steroids are not often the first med of choice for disorders other than Lyme that we all might have.
If any new Lyme patients come on here, and actually have some positive testing (as I am my family members do), and if money is an issue (as it is for many), then this would not be a bad place to start.
The thing is, if we all keep seeing LLMD's who are out of the system, then these docs will never learn anything or change their minds about anything. So, if it is relatively safe to use this clinic for some (with positive testing and insurance coverage), maybe some good will come out of it (meaning in the "Lyme wars" as well as for the individual.
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posted
Not everyone is a member of lymefriends, so could someone please post the info on this? If a person involved with the clinic is a presenter for the IDSA, then it is pretty clearly not going to help anyone with chronic lyme, and it is a set-up. Wondering if the RI insurers are also behind this since there is a state law requiring lyme treatment payment.
Peel off a lot of patients, collect from insurance for something that doesn't involve abx treatment. That is how it is looking.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Here is the list of presenters at the IDSA guideline review. I don't see Silverblatt, Bandola, or Quinn on the list. Can someone clarify who from this clinic is involved in the review?
1. Tina Garcia (patient advocate ) 2. Lorraine Johnson (patient advocate) 3. Daniel Cameron (physician-scientist) 4. Phillip Baker (physician-scientist) 5. Ben Luft (physician-scientist) 6. Allison Delong (scientist) 7. Barbara Johnson (physician-scientist) 8. David Volkman (physician-scientist) 9. Sam Donta (physician-scientist) 10. Eugene Shapiro (physician-scientist) 11. Brian Fallon (physician-scientist) 12. Sunil Sood (physician-scientist) 13. Ken Liegner (physician-scientist) 14. Allen Steere (physician-scientist) 15. Steven Phillips (physician-scientist) 16. Art Weinstein (physician-scientist) 17. Raphael Stricker (physician-scientist) 18. Gary Wormser (physician-scientist)
And btw, the story someone supplied a url for, definitely puts this clinic in the IDSA gang. Maybe the person who started this thread should change the subject line to: Hospital clinic to start treating chronic lyme patients for something else instead. They are not going to be treating with longterm abx.
Posts: 8430 | From Not available | Registered: Oct 2000
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TerryK
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posted
Lou - I agree with you. Did you read the interview that I posted?
Shotsy - At a clinic like that, since I don't have a CDC positive test - only IgeneX positive for IgG and IgM - I would likely be exactly where I was when I found out I had lyme disease.
Pallative care for fibromyalgia and Chronic Fatigue Syndrome. LOTS of anti-depressants, told to exercise (we don't care how sick it makes you or for how long), sleeping pills, pain killers, steroids for trigger point injections, meds for Sjogrens, prescription nasal sprays and the list goes on and on. Constant battle with my doctor because I refused the steady stream of prescription meds that I was told I needed for my symptoms.
Heck, I could end up just like my sister, so drugged up that she can't function at all. All the while getting sicker and sicker. At least she won't have to suffer as long as some because she'll die faster with the use of all those drugs. She's already had permenant damage from some of them or at least that is what her doctor told her. She has no hope of ever getting better. I've seen it many times in chronic Lyme patients who when they do get treatment, get better.
Can you tell I am little bitter at having spent the last 20 years getting a lot sicker instead of getting proper diagnosis and treatment? I don't want to see others end up losing the best years of their life to the IDSA BS propaganda.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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METALLlC BLUE
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All aboard the fail boat. This has fail written all over it. The only thing they're saying that makes me remotely lift a brow is "Chronic Lyme, co-infections, and comprehensive care."
Roughly translated:
Chronic Lyme really means "Post Lyme Syndrome. You won't be getting long term antibiotics, so don't even think about it.
Co-infections really means: Positive test, you win the prize of a week or two of antiparasitic/antibiotic therapy -- if you're still sick after tx, it must be something else. If you test negative, it....must be something else. (When the reality is chronic co-infections are being seen in patients with immunocompromised Chronic Lyme)
Comprehensive dx/tx: We'll run a lot of tests that will come back negative. We won't consider heavy metals, neurotoxins, candida infection, mold exposure, opportunitistic viral reactivation or a long list of other "controversial" aspects of Chronic Lyme, but we will run autoimmune panels, ANA, and psychiatric testing.
I can see thru these people like a window just windexed. It only takes one or two words and you just know they'll have you rearranging deck chairs on the titanic.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
feelfit
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posted
Lou, Dr. Phillip Baker is the Director of the clinic
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feelfit
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posted
If I knew how to cut and paste, I would post the info from Lymefriends. I don't know how to do that. Sorry.
Feelfit
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gemofnj
Frequent Contributor (1K+ posts)
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posted
Feel,
All you do is go the area you want to copy and highlight it. Then go to "edit" at the top of your page. Click on EDIT, and drop down and highlight COPY, and it copies to your clipboard.
Then go to any area you want to put your info, and go to 'edit' again and highlight PASTE. Oila!
You can also do this with links in your address bar when you want to insert links in posts.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Tracy9
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posted
I have volunteered to be a "guinea patient" and go there. I'll try to get an appt tomorrow. should be fun.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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What I found:
Doctor number one at new Lyme Clinic:
Frederic Silverblatt, M.D.
Dr. Silverblatt trained in the field of Infectious Diseases in Seattle, WA under Dr. Robert Petersdorf and Dr. Marvin Turck. He remained at the University of Washington as a faculty member until he relocated to the University of Tennessee at Memphis where he was hospital epidemiologist for the city of Memphis Hospital. Following his stint in Memphis, he moved to Los Angeles, CA where he was Chief of Infectious Diseases at the Sepulveda VA Hospital and Professor of Medicine at UCLA.
In 1986 he became Chief of Medicine at the Providence VA Medical Center and Professor of Medicine at Brown University. His research interests have been in the pathogenesis of urinary tract infections and antibiotic nephrotoxicity. Currently Dr. Silverblatt is in private practice and consulting in Infectious Diseases at several Rhode Island hospitals. He maintains his interest in teaching both at the post-graduate and graduate level as an Emeritus Professor of Medicine at Brown.
Doctor Number Two:
Doctor Number Two:
Dr. number two is cited in the infamous Klempner NEJM study:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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AND finally...
Their ONLY links to outside resources on "learn more about Lyme Disease" are to the American Lyme Disease Foundation or whatever it is......the bad guys pretending to be good guys.
NOT GOOD at all. No links to Ilads, LDA, or anything else.
VERY VERY BAD. Check out the website. Director is Dr Philip Baker who is presenting at IDSA hearings on the other side.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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While at your appointment could you spread some Under Our Skin flyers around? How about some Cure Unknown books?
Lyme disease has given you a twisted sense of fun - Dealing with IDSA (I Don't See Anything) doctors makes my blood boil.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
song, i agree with someone else, would you edit subject line and then add
treating with IDSA guidelines, NOT ILADS!!
just click on pencil, your 1st post, and it will open up subject line for you. click edit send when done.
posted
Yes, thanks Terry, I did read that article you posted. That was what opened my eyes to the intent of the clinic.
Very sorry about your history and your poor sister. I guess she has decided not to go with chronic lyme treatment? It is so painful when a family member will not listen to someone who tries to help. That is the situation in my own family, but not with lyme. However, my sister-in-law had a tick on her at least two days, could not get any abx from family doc, and did not pursue it.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
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posted
Sorry it sounds like to me they have seen all have
failed in their directives of preventing treatment
of Lyme as related to CFS, MS, ALS, Alzheimers,
ETC. And have decided to profit from that failure.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Someone mentioned that some people might benefit from going here and trying steroids if they don't have money for anything else. I hope most of use know that's a BAD IDEA since steroids will make it so much harder to get rid of the lyme and cause more permanent damage. Just wanted to make sure a newcomer didn't read that idea and think... hmm hey sounds like a good thought.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
Sounded good at first. I'm glad others are able to keep up with everything I guess. I hope that this will be beneficial to others in need and in the meantime maybe teaching these doctors a lesson....but I don't think anyone on either side would be willing to admit they were wrong. Especially NOT them.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
Maybe all us Lymies under good LLMD care who live in RI, CT, MA, etc, ought to go there for a little "visit". We can show them how horrible we were and how much better we are now under proper care... Hmmmm.... Just a thought...
Since they take insurance, it shouldn't be more than a little time and a co-pay for those of us with insurance...
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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Tracy9
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posted
I like it, Allie. Let's get our appts together!
Here's another tidbit, read carefully...TOTAL IDSA guidelines:
Posted June 8, 2009 Life Sciences Five Questions With: Dr. Fredric Silverblatt By Marion Davis Contributing Writer
Dr. Fredric Silverblatt says many people with suspected Lyme disease are misdiagnosed and don't get the proper treatment.
Nearly 90 percent of Lyme disease cases occur in the Northeast, according to the R.I. Department of Health, and while early treatment can prevent serious complications, the disease, caused by a bacterium, can lead to long-term problems with memory and concentration, fatigue, joint swelling and more.
In 2007, state figures show, there were 236 confirmed Lyme cases, 12 probable cases, and 995 cases in which it was suspected.
Last Friday, South County Hospital opened a Lyme disease clinic in its emergency department, staffed by Dr. Fredric Silverblatt, an infectious-diseases expert; internist Dr. Jeffery Bandola, and Lee Ann Quinn, the hospital's manager of infection control.
Silverblatt answered questions about the disease.
PBN: How many different tick-borne diseases do you see, and is Lyme disease the most common and the most serious?
SILVERBLATT: There are three different diseases common in Rhode Island that are carried by the deer tick: Lyme disease, anaplasmosis and babesiosis. One tick can transmit one, two or all three from the same bite. Lyme is by far the most common. Treatment is not the same for each one, so it is important for the physician to consider this when the patient does not respond to what should be adequate therapy. Each can cause serious illness - I was hospitalized two years ago with encephalitis caused by Lyme and babesia - but most often they have flu-like symptoms. Some underlying conditions could make them life-threatening, such as having babesiosis when you've had your spleen removed.
PBN: What led you to open this clinic at South County Hospital?
SILVERBLATT: My major reason is that during the course of my infectious disease practice, I have seen many patients who have not received proper diagnosis for suspected Lyme disease and have been receiving inappropriate treatment. The clinic is not for acute cases of Lyme disease, for example at the stage with the typical bullseye rash - that is readily handled by primary care providers. Rather we will see patients who have had symptoms for months and are not responding to therapy. Many do not have Lyme disease and require re-evaluation and re-diagnosis so that they can receive proper treatment for what they do have.
PBN: How treatable is Lyme disease at different stages?
SILVERBLATT: Lyme disease is very treatable during the early stages, and if adequately treated, the disease does not progress. The early stages include the bullseye rash, joint pains, meningitis, Bell's palsy and nerve pains, among others. The later stage is manifested by chronic or recurrent swelling of large joints and central nervous system symptoms such as memory difficulties, chronic fatigue and problems with concentration and mental skills. Treatment is usually successful with a two- to three-week course of doxycycline taken orally twice a day for the earlier stages. For the later stages, a one- to two-month course of intravenous ceftriaxone is recommended.
PBN: Lyme disease has been around for awhile. Have the treatments and diagnostic tools gotten better in the last few years, or are they mostly unchanged?
SILVERBLATT: Treatment hasn't changed much over the years. We are now recommending that if a person notices an embedded tick that has been there for less than 36 hours, two tablets of doxycycline can prevent subsequent infection. The scientific literature does not support the use of long-term therapy for the later stages.
The tests used for diagnosing Lyme are undergoing evaluation. Currently the screening test requires a second test to make sure that a ``positive'' is truly due to Lyme. The C6 peptide is being evaluated to see if it is a accurate as the double test. There are many misconceptions about the sensitivity of the tests to diagnose Lyme disease. The test is often negative early in the disease (at the rash stage) and may not turn positive if treatment is prompt, but those people will not go on to develop the later stages.
PBN: What are the best preventive measures that you can recommend to the public?
SILVERBLATT: The best strategy for preventing Lyme disease is to avoid contact with ticks. We have a deer fence around our garden. Ticks do not travel very far from the deer or mice that carry them. Ticks love brushy areas or piles of leaves - you won't get bitten if you stay on the paths. If you do go into a tick-infested area, these measures are recommended:
Wear clothing treated with permethrin, an effective insecticide.
Spray DEET on your exposed skin.
Wear white socks to better see ticks crawling on them, and tuck your pants into the sock.
Inspect yourself after contact, looking in the ``crevice'' areas: underarms, groin, behind your legs.
If you see an embedded tick, remove it with needle-nosed tweezers, grasping the head and pulling out firmly. Ticks won't inject the bacteria into you for about 24 to 36 hours after they attach, so prompt removal can prevent infection.
The Lyme disease clinic will be open Fridays from 9 a.m. to noon and 1 to 3 p.m. Patients will be seen by appointment only and must have a physician referral. To schedule an appointment, call 788-1486. Only adult patients will be treated.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Nancy2
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posted
I live in Rhode Island, and trust me......there are no Lyme Literate physicians here.......ANYWHERE!. I travel out of state to Connecticut for treatment. I would not waste my time or my breath with this place! They will never backdown!
Nancy
Posts: 1487 | From New England | Registered: Oct 2000
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posted
Silverblatt says that he was hospitalized 2 yrs ago w/encephalitis from both Babesia and Lyme. How can it be that he holds this view on treatment?
Did he really get completely well from 1-2 weeks of IV ceftriaxone?
I have a hard time believing it.
Posts: 975 | From California | Registered: Apr 2007
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Amanda
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posted
If anyone does go to this clinic, would you mind posting your experience? I'm interested in what they have to say...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Tracy9
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As soon as I can get up the energy (next week) to get my doc to send a referral, I'm all over it. Might even secretly bring a little tape recorder!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
If Silverblatt got treated early enough, maybe he did get well. How many of us were given a couple weeks of IV abx at the early stage? Darn few, I would guess.
Wondering if he had been treated for some kind of cancer and was cured, would he now be telling non-cured cancer patients that they didn't really have cancer anymore because they had already been treated? Or never had it to begin with? What an ignorant and dangerous man.
Posts: 8430 | From Not available | Registered: Oct 2000
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Shosty
Unregistered
posted
I did not say that if you don't have money, go to the clinic and take steroids. I said that steroids are NOT a first choice of treatment for autoimmune problems, which these MD's might say patients have instead of Lyme. Plaquenil might be suggested, however, which LLMD's often use.
If a patient does not have money, they can still go to this clinic and get testing done, and even a first few weeks of antibiotics, with costs covered by insurance. This also gives time to look for good care. That is a financial strategy that many of us use, before we find the right doctor and meds.
However, if people have children with Lyme, they should be careful, because these docs can report you if you are under their care, but then pursue treatment that they do not agree with.
One other thing: for those of us with chronic Lyme that does not respond to antibiotics, or those of us who can no longer take antibiotics, isn't it possible that there might be something helpful offered at this clinic?
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posted
It was an ID doctor in CT that had a conference call with my Primary Care Physican here in VA, and recommended starting me on IV Rocephin. Which I believed saved my life. (This is before I knew about LLMDs). But the ID doctors here, at 2 different hospitals stated my blood tests were false positives. I wonder how the ID docs at this new clinic are going to view labs -- surely they are going to have to shift from the false positive position.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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CD57
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posted
Brilliant idea re spreading the flyers around for UOS,and Cure Unknown, anything! Just leave a few out in the waiting room, post some on the walls...that is a GREaT idea.
I can't wait to hear what the guinea pigs have to say--go guys!
Posts: 3528 | From US | Registered: Apr 2007
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posted
"and they accept insurance" like they have the magic wand to make insurance pay for effective chronic Lyme treatment - some magic ILADS doctors don't have.
Talk about dangling the carrot! I'm very concerned about the people they will draw into their clinic who need real help!
How many will they dx with Lupus, MS, Fibro, CFS....
Then they will say "see, these are the people who could not get well, who were told they have Lyme - we discovered they don't".
sad.
AND there in RI - like California and now Connecticut. Doctors can treat according to the patients needs - freely. So why aren't there legitimate ILADS clinics? Everywhere?
-p
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I'm glad others are able to keep up with everything I guess. I hope that this will be beneficial to others in need and in the meantime maybe teaching these doctors a lesson....but I don't think anyone on either side would be willing to admit they were wrong. Especially NOT them.
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