Spaulding Rehab Hospital in Boston

www.bostonglobe.com/metro/2015/10/11/for-lyme-disease-patients-new-approach-aims-ease-residual-effects/Dzq8hZni6BoBiKZ99eq20O/story.html?s_campaign=8315


Brian Fallon's name caught my eye immediately!

This article really upset me when they used Brian Fallon's name. Their approach is simply that chronic Lyme patients just need rehab!!
"“I’ve come to realize Lyme patients are rehab patients,” Crandell said. Post-treatment Lyme disease patients often have problems with memory and thinking, similar to patients who have suffered concussions or other brain injuries, said Dr. Nevena Zubcevik, a brain injury researcher and co-director of the new center."

IMHO, this is NOT something to be celebrated, but should be upsetting to all of us. Why? : They aren't focusing on more or better treatments, but ways to help us cope with symptoms of an ongoing infection that they don't want to treat!!
"Occupational therapy can help teach these patients skills to piece their lives back together, the doctors said. Other types of therapy can be targeted for patients with balance, muscle, and joint problems."

"Health insurance companies have covered most services at Spaulding for the first batch of post-treatment Lyme patients, the doctors said.

And why would anyone submit to something like this for an infection that needs abx - unless they too are brainwashed into thinking that an ongoing infection is something that they have to just live with? : "The Dean Center will also support research, including a pilot study enrolling 20 people to test whether use of a mild electrical current in the brain might improve the thinking problems, fatigue, and pain experienced by so many post-treatment Lyme patients."

And this says so much: "Spaulding’s focus on rehabilitation" - not on treating the ongoing infection!!

This is more misinformation being spread. They have brainwashed some people to come have that rehab, but what happens when it ends? People will still have the infection(s), and will need to go back for more "rehab" over and over again. This is only yet another attempt to discredit chronic Lyme patients and to create a massive amount of people that will forever need their "rehab" services.

Sorry. I'm done with my rant now. I hope I didn't offend anyone but this stuff makes me sick to my stomach as they are saying all I (and many of you) need(ed) is rehab, not treatment.
Backing away slowly from the soap box now!!

Exactly, Happyjo. They are trying to rehab people that have an ongoing infection rather than give them the abx that will actually do something for them.

This is no different than those doctors that tag many people with Fibro just so that they will keep coming back time and time again for more meds and more medical help. It keeps the money coming in.

Sorry all, but when someone says there's a new treatment or new place like this one, I look for what's wrong. I've been well trained by the medical establishment!!!

You should read the first post I wrote above. It's very telling.

So sorry Trav. - I thought this was IN ADDITION to regular treatment, something to help with symptoms. Guess I did not read it properly.

Sorry I posted it everyone!

I"m sorry, ShutterGy, I was only quoting what was written.

Would you consider posting your experience with this program? At least then we will have more to go off of than just this one article.

Don't worry, I don't take it as criticism. I was only commenting on what I had read. No one knows for sure until they go there or someone else goes and reports back, which is why I was asking you to post about your experience there!

I"m actually anxious to see if we have another place to refer people to!

logmoss82 - I see that ShutterGy has his email enabled. You could always send him an email.
(Just click on the envelope under his name on the left)

Hi
For my two cents -- as long as they are not negating ongoing antibiotic or other preferred treatment of the disease -- I would welcome a centre that offers a range of holistic therapies and supports to help "rehabilitate" a person.

For my son, who has been hit hard in the frontal lobe with lyme for the last decade (his 20s), I have been searching recently to figure out how to put together supports to help him regain what has been lost or frozen - and had been wishing there was a whole program he could be put in, under someone else's care, to help. Otherwise it's me trying to find the right group of people.

He needs:
-- a "life coach" (how does he get back to school a decade later, or get a job when he is unskilled, how does he redevelop social confidence and skills, or how does he find a mate -- long after his friends have married and started families - when he has no economic prospects and missed a decade of learning how such relationships work)
-- cognitive training ( I often think something like the programs here http://www.arrowsmithschool.org/arrowsmithprogram-background/neuroplasticity.html ]
-- physical retraining
-- occupational therapist - job / academic assistant (to help smooth the path if he tries to go back to school or work)
-- spiritual support in making sense of what's happened and his place in the world
I try like crazy to provide these supports with our feeble efforts in home -- but it is just not sufficient to give him his best chance of regaining all he can out of his life.

Two individuals that I know, each living in two different provinces, recently suffered mild concussions, and I have been flabbergasted by the exceedingly wide range of all of these supports that they have been provided. While this is great for them, it is a sad commentary that these are not at all accessible to us with lyme -- unless I try to access the programs directly (to date when attempting to access I've been told that I need a referral or need to fit another disease / injury profile and the family docs here won't recognize lyme or refer...) and pay out of pocket.

So, not getting drawn into the politics, in my view these supports are sorely needed...in addition to active antibiotic and herbal treatment to blast the disease ..and not forgetting the need for supports within the home, like visiting homemakers, respite care, all sorts of stuff we could have benefited from and can't access.

I simply couldn't have said it better than LymeMother or Girlie. We do need those kinds of support services very badly - I would have benefited tremendously myself. And LymeMother, your son couldn't have had a better support than you. Thank you for watching over him.

Awww, Girlie. Hug.

[I must say, that I don't cry often (maybe about once or twice a year - because what's the point?...too much to deal with) BUT when I DO cry, those quiet, soft, warm, lovely, salty tears rolling beautifully down one's cheek feel so awfully good! Grin!]

Oh, yes, I cry in an instant for books, movies, other's stories...and mcdonald's commercials. (where the 3rd is by far the most important). This began during my first pregnancy and hasn't let up.

I blame my Scottish heritage, however, for the "carry on" approach to my family's own plight - although, I'm sure it's the blessing of that same heritage that causes a wee flutter in my heart whenever I recall the image of a kilted Liam Neeson roaming the Scottish Highlands as Rob Roy. Oh, sorry, I digress. {....but what an image}