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Posted 7/14/2016 5:08 PM (GMT 0)
I will be interested in hearing comments about this. I am not the expert many of you are about Lyme, but I have been very happy with the care I have received at Spaulding Hospital in Boston from Nev. I encourage anyone within driving ditance to apply to the program at the Dean Center.

www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/


Good Luck,
Ed
Posted 7/14/2016 5:17 PM (GMT 0)
excellent read, thank you
Posted 7/14/2016 6:13 PM (GMT 0)
great article, thank you for sharing!
Posted 7/14/2016 6:26 PM (GMT 0)
Thanks for sharing. How is the program going? Any specifics that you can share?
Posted 7/14/2016 6:37 PM (GMT 0)
Links within that reference CDC/post Lyme that might make some take pause. Does this doc endorse ILADS?

In one of the links associated with this publication was something called "Lyme Nation"--Does anyone know if this s related to "Lyme Corp"?

Post Edited (happyjo) : 7/14/2016 12:44:21 PM (GMT-6)

Posted 7/15/2016 1:15 PM (GMT 0)
Krimpet, I did not read into the links to the CDC as those were by the author, not Nev.

Happy Jo, I do not remember discussing ILADS with her. But she is very much frustrated with the attitude of most Dr's especially Infectious Docs.

The Dean Center was set up to be a clearing house and resource for both patients and Dr's. She does not prescribe meds, but works with my LLND on choosing a protocol. If I did not have a Lyme Doc they would have found a literate one for me. She has prescribed tests and a form of physical therapy called Vestibular therapy which was VERY helpful fopr my balance issues. She has also referred me to a Lyme literate Neurologist. I have only had one appointment with him and am waiting for tests to be performed.

She is incredibly passionate about Lyme. You can see the anger and frustration on her face when she hears stories about the average Lyme patients experience.

I encourage anyone within driving distance to contact them.

Good luck,
Ed
Posted 7/15/2016 3:36 PM (GMT 0)
thanks for the insights ShutterGy. That is very cool to hear. It seems like there is a bit of action at Harvard, Miklossy is supposed to release a position paper on spirochetes and Alzheimer's with the Harvard team of Moir and Tanzi who recently published a study looking at infections and Alzheimer's. Imo, if an institution of Harvard's credibility finds a connection between spirochetes/borrelia with Alzheimer's it would blow open the doors for research and funding into lyme/coinfections. Alan MacDonald has laid the groundwork, but we need large institutions pursuing and pushing the research as well.
Posted 7/15/2016 3:50 PM (GMT 0)
Thank you for this!!
Posted 7/15/2016 3:59 PM (GMT 0)
Ed~ILADS seems to be an important piece of info. Is there a reason that this doc refers to a LD neuro & does not prescribe antibacterial or such herself? What tests did the LD neuro order?

A concern would be that all the physical therapy in the world (or mental exercises for Alzheimer's) aren't going to be effective without addressing underlying root cause/infection.
Posted 7/15/2016 5:18 PM (GMT 0)
HappyJo,

I was not clear, I am sorry. the focus of the Dean Center is not to be the primary Lyme Doc for patients but a resource to find LLMD's and/or to support those doctor's and their patients. They are doing research and trying to help as many as possible. Their focus is to help improve the various symptoms while being treated with abx or herbals. I personally have not been able to tolerate abx as of yet.

My life has been greatly improved because of that therapy. I have not fallen down in months which had been happenning several times a week. The Neuro has ordered an autonomic nervous test and a small skin nerve biopsy. He specializes in autonomic nervous disorders. Through his patients he has become an LLMD as he has found the majority of his patients have Lyme and he now believes that Lyme is the cause.

He is also a Harvard Doc. I am hoping that the power of the institution and that of these Hospitals; Spaulding, Mass General and Brigham and Women's will protect these Docs from the CDC and IDSA.

I agree that ILADS is incredibly important. I was just so impressed with her from the start I did not feel the need to go further. The simple fact that she diagnosed me clinacally was enough for me.

From The website:
"The Dean Center nurtures relationships with referring providers to help arrive at the most appropriate care plan and plan a compassionate and comprehensive, evidence based and patient centered care."

Good Luck,
Ed
Posted 7/15/2016 11:16 PM (GMT 0)
I'm honestly not trying to be confrontational, as if it really has helped you, then hooray. But I don't understand why these ivy league doctors would only refer & not fully treat? If they truly believe it needs comprehensive, then why not go full tilt? It's almost as if one (doc) or center is scratching the back of the other, while patients are caught between paying the high "spa" bills.

Reminds me of this illustration I came across--a patient being told by the doctor that it is understood that the patient is depressed, but be "Just like the that bear over there," the bear seen carnivorously devouring, while striking a yoga pose: /www.etsy.com/listing/275645632/yoga-bear-tshirt?ref=shop_home_active_11
Posted 7/15/2016 11:42 PM (GMT 0)
ShutterGy - Do you know what the autonomic nervous system test involves?

If you have any information on that, would you share?
Posted 7/16/2016 1:45 PM (GMT 0)
Girlie,

It has been described to me a a tilt table test on steroids. I had one once before by another Doc, but I was so bad back then it was not a valid test and I really don't remember much about it other than that I passed out twice. That Doctor diagnosed me clinically with the partial data he had, but then did nothing for me. This Neurologist says that once he has the complete data there are meds and therapies he can prescribe.

HappyJo,

Sorry if I seemed defensive but I disagree with you. The way they have this set up, they can help and support many more patients and LLMD's. Just because the approach is new does not make it wrong.

Check out the website:

spauldingrehab.org/research-and-clinical-trials/lyme-disease/

Good Luck,
Ed
Posted 7/16/2016 10:44 PM (GMT 0)
It sounds like you've been supported well, so far, Ed.


"A concern would be that all the physical therapy in the world (or mental exercises for Alzheimer's) aren't going to be effective without addressing underlying root cause/infection."

happyjo - I see a Physio for my muscle atrophy/frozen shoulder issues...and I don't expect that to be my cure. I have a LLND to address the underlying root cause/infection.
My physio doesn't need to do that. She supports my treatment...and is learning from me about Lyme disease...which is a good thing.

It sounds like the Dean Centre refers patients to LL Dr.'s for addressing the infections...
Posted 7/16/2016 11:14 PM (GMT 0)
One thing that is surely lacking in the American "health"care system is coordination among doctors...and the implications can be downright deadly.

It seems that people using the Dean Center stand to benefit from what they have to offer.

And, the fact that the doctors at the Dean Center are also doing research makes them all that more appealing to me.

I hope their fees aren't overly horrible because these infections are really rough on the wallet.
Posted 7/16/2016 11:15 PM (GMT 0)
Just like my chiro who helps with my owies of lyme.

And my acupuncturist. Oh gosh and my physical trainer...

They all help with my lyme and all the weird manifestations that lyme presents to my body.
Posted 7/17/2016 3:49 PM (GMT 0)
Hello, ShutterGy
I'm very excited about the Spaulding centre and the services they're offering for lyme. I wish I was a bit closer and could access their services for my son (and a bit me) on a regular basis. They're offering the types of additional supports I have been trying independently to put in place. In trying to find the supports myself, I run into a challenge of having to find a particular type of practitioner (e.g. physio, cognitive, psychologists) who will take the time to learn about lyme and the unique orientation that they may have to have in delivering their services to best help. This has been a massive challenge and it is so amazing that the Spaulding folks are building such a range of offerings in one place.

HappyJo, I would suggest that the reason why they're only doing the rehab is because that is all that Spaulding has a mandate to do. The folks at the centre likely kept bumping into individuals who had the need for such services and Spaulding, wonderfully, recognized these weren't an isolated few but reflected an overwhelming need...and added this practice into their already established mandate - which is rehabilitation. I suspect that, in time (as outcomes are demonstrated, as the sheer numbers of patients suffering is shown, and as the stranglehold of ID idiocy is lessened), you'll see a tighter integration between the rehab & medical. At this point, though, this separation of medical vs rehab is fairly common in other disease / injury cases - e.g., heart disease, brain injury, other accident recovery.

ShutterGy - as others indicated, I'm very interested in hearing about the specific services you're receiving (how often, for how long) and what differences it makes for you.

Post Edited (LymeMother) : 7/17/2016 9:58:44 AM (GMT-6)

Posted 7/18/2016 1:59 PM (GMT 0)
Thanks all,

I just want to be clear that I have no vested interest in Spaulding. I am simply a thankful patient wanting to share with others as this Center seems to be a very unique situation. As far as costs it is covered by my insurance so incredibly less costly than my LLND. I see her about every three months (two times so far). After each visit she has called my LLND and discussed possible adjustments to my protocol. She suggests , but my LLND and I make the decisions.

As I mentioned earlier she recommended vestibular physical therapy which changed my life. I no longer fear standing or walking and no longer use a cane. That alone was worth any amount of money I ever spend there. And now my LLND is aware of that as a tool for other patients.

She suggested I have a neuro psych test which I did , but chose to do it in NH instead of Boston and that was a mistake. That Dr. was awful. I am scheduled to have a new test done in Boston in September.

She referred me to a LL Neurologist who seems to be amazing. I feel I am getting the very best care possible for a disease that is still so misunderstood.
Posted 7/18/2016 3:25 PM (GMT 0)
it's wonderful that you're feeling so supported...and everyone's working as a team.

I'm envious. yeah
Posted 7/18/2016 4:01 PM (GMT 0)
That's wonderful, ShutterGy!! I'm so very glad that you are getting all the help you need! We really need more places that will help coordinate the care of Lyme patients!! I hope your success continues!!
Posted 7/18/2016 5:19 PM (GMT 0)
And yes, guys, I certainly understand having extra physio help, yada. But not everyone has the luxury of paying for so much that would be beneficial. Some can only scrape barely the cost of antimicrobial/etc to treat infection. And it is so easy for the idsa/etc mentality to creep into some of these places, trying to placate patients & not treat the whole body.

-BUT- Ed--it is SO good it is indeed helping you! And that they accept insurance-woohoo! Keep us posted!
Posted 7/18/2016 5:57 PM (GMT 0)
Hello, Happyjo
I agree about the money etc. for extra physio, help, etc. That's one thing I'm struggling with; I feel my son really needs a wide range of supports and I can't afford to put them in place ...my key focus obviously has to be figuring out how to cover the LLMD and antibiotic/supplement expenses (especially given I can't work for the last few years while caring for him). It was exasperating to me recently when two different acquaintances (one on the east coast and one in Toronto) experienced concussions and I heard from each of them of the full range of services they each were provided under our funded healthcare system.... the types of service I was trying to figure out how to afford. To me that's another reason why I'm excited by the Spaudling / Dean Centre as, as we advocate for changes, we can point to it as a model and standard of care that our health system should be putting in place for lyme patients.
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