Re: for Sherri/any other K-S patients

[Guest guest]

Hi:

Amy was shadowing . She was in the room with us when I was being examined. I thought she was observing the practice. I don't have PT and it was never suggested so there would have been no chance of any PT being observed.

There have been other medical people from all over observing for a day with . I never mind if she brings people in so I see a lot of them. I'm pretty sure they pay to come and watch what she does with her patients.

Does a practice out of 's office at all or just out of Bala Cynwyd? I've never heard of her from within that practice and I go to (well, last month four times!!) so I am pretty much always there.

Sherri

Well, if other top pelvic PT's are coming from afar to observe, THAT'S a good sign! a's practice is in Bala Cynwyd. If i were to see also, would a see me at the Center? (In other words, was Amy there to observe the PT's in action or to see the Center? Or do you know?) Hollis

[Guest guest]

Does a practice out of 's office at all or just out of Bala Cynwyd? I've never heard of her from within that practice and I go to (well, last month four times!!) so I am pretty much always there.

O.K.. . . then it sounds as if she sees her clients solely in Bala Cynwyd, which

was my original impression. I'll double-check. She's definitely part of the

group. When i corresponded with her, she told me that people usually see

or another appropriate medical person along with an evaluation with

her -- and gave me the number. And if you look at the Center's website,

there she is.

Hollis

[Guest guest]

Hi, Years ago I saw and a. They were in separate offices. Sandi

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[Guest guest]

Hi,

Years ago I saw and a. They were in separate offices.

Sandi

Sandi,

I should have known you'd seen a at some point, since it seems

as if you've checked out almost everybody who's anybody!

So, what did you think of her? Was this just a one-time evaluation?

Hollis

[Guest guest]

Hi Hollis, Yes, this was a one time eval. I don't know why I bother to see experts so far away when I know I can't trek down there every week. I guess I was just really desperate for answers. I really liked a, I think she is very knowledgable and I highly recommend her. She only did external work on me for this one and only visit. But I was very impressed. Now I go to Nazneen at Beyond Basics ( Amy Stein's group) and have come to the conclusion that the skin rolling is imperative, at least for my case. It is painful but apparently my connective tissue is stuck to my bones and this is really the only way to fix it. I am doing the Lyme treatment along with the PT so I am really doing yet another full court press of this problem. So far I have my horrible days, but my better days are generally better than before and sex is

possible with minimal pain. I am far from jumping for joy b/c the pain is still constant ( although at a lighter level) and it still gets to the "morphine level" at times, so I still am disabled by this nightmare. I don't think I will be happy until I start having some pain free days. Good news though--- I am starting to move on with my life anyway. I joined a health/fitness club so that I can take yoga classes as Nazneen recommended for relaxation of the pelvic floor. This doesn't sound like much to most of you but to me it is big. Except for doctors I usually am being a mom and doing everything for the kids and this is something for me. I also am looking into going back to school - perhpas via an online or distance program- to get my Masters in Public Health. That means in addition to the very expensive medical costs I will be making a $20K investment that will only pay off

if I get better---enough to go back to work. Please keep your fingers crossed for me. The whole goal is for me to get well, make money so that I can send my kids to college. I don't even want to think how horrible it would be to use up all the money on my tuition and then be too sick to work. I have to bank on getting better, Sorry to digress so. I hope you see a! Love, Sandi

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[Guest guest]

I really liked a, I think she is very knowledgable and I highly recommend her. She only did external work on me for this one and only visit. But I was very impressed.

Sandi,

Thanks so much for writing. Hearing such good things from someone who's

actually seen her makes me more interested in really seeing this through.

Did she only work externally because you asked her not to do internal?

If not, did she explain why she wanted to stick with the external work

only?

The whole issue of internal work is a difficult one for me. Everyone who's

gone through it seems to be saying that the internal work is probably the

most important. But in the shape i'm in now, any internal explorations

i''ve done on my own (one time with a Crystal Wand, actually long before i knew that using this particular toy was something that PT's recommended)

has resulted in horrible flare-ups of literally weeks duration. So i am really crotch-shy at the idea of what that would entail.

The other big question is how much i could learn from just one eval since

i would be travelling about 3-4 hours to see her.

After the eval, did a give you a good run-down of what muscles were

doing what? Did she give you at-home exercises?

By the way, Sandi, last night i received a missing first page from my

July 2005 Igenex Lyme panel. (A few weeks ago i realized it was

missing. My PCR had been negative and my IgG Western Blot was

negative, but questionable.) And guess what? Yes, the IgM was

positive, positive, positive. I already knew that, given my long history

(including a bull's-eye rash on my leg within the first week of arriving

at college in Massachusetts) and my tons of Lyme Sxs that i should

treat for it. But this is definite. Of course, i'm angry that this was

lost all this time, but at least now i know for sure.

Did you ever get tested for the co-infections and/or the CD57? I was

in the process of getting that arranged, but now i feel a great sense of

urgency to get it done.

Hollis

[Guest guest]

Good news though--- I am starting to move on with my life anyway. I joined a health/fitness club so that I can take yoga classes as Nazneen recommended for relaxation of the pelvic floor. This doesn't sound like much to most of you but to me it is big. Except for doctors I usually am being a mom and doing everything for the kids and this is something for me.

I also am looking into going back to school - perhpas via an online or distance program- to get my Masters in Public Health. That means in addition to the very expensive medical costs I will be making a $20K investment that will only pay off if I get better---enough to go back to work. Please keep your fingers crossed for me. The whole goal is for me to get well, make money so that I can send my kids to college. I don't even want to think how horrible it would be to use up all the money on my tuition and then be too sick to work.

Sandi,

Just wanted to add that i'm so glad to here that you've become more active

and engaged in the world -- and making plans. It IS a big thing!

Hollis

[Guest guest]

Hi Hollis, I'll put my answers/responses in purple type below. Did she only work externally because you asked her not to do internal? If not, did she explain why she wanted to stick with the external work only? I think she only did internal b/c I was so sore. From what I have read other PTs work on the outside muscles until you can tolerate the internal. She also users ice immediately afterward to help with pain/swelling. Everyone who's gone through it seems to be saying that the internal work is probably the most important. But in the shape i'm in now, any internal explorations i''ve done on my own (one time with a Crystal Wand, actually long before i knew that using this particular toy was something that PT's recommended) has resulted in horrible flare-ups

of literally weeks duration. So i am really crotch-shy at the idea of what that would entail. I think now that the skin rolling is even more important than the internal work. Do you have pain on contact or 24/7 pain? I have 24/7 pain pretty badly but I can tolerate the internal work w/o much irritation. Do you live near NYC? I really like Beyond Basic PT. The other big question is how much i could learn from just one eval since i would be travelling about 3-4 hours to see her. After the eval, did a give you a good run-down of what muscles were doing what? Did she give you at-home exercises? Yes, she was thorough and she gave me home exercises.nex Lyme panel. (A few weeks ago i realized it was missing. My PCR had been negative and my IgG Western Blot was negative, but questionable. ) And

guess what? Yes, the IgM was positive, positive, positive. I already knew that, given my long history (including a bull's-eye rash on my leg within the first week of arriving at college in Massachusetts) and my tons of Lyme Sxs that i should treat for it. But this is definite. Of course, i'm angry that this was lost all this time, but at least now i know for sure. Did you ever get tested for the co-infections and/or the CD57? I was in the process of getting that arranged, but now i feel a great sense of urgency to get it done. I did get tested for coinfections. I don't have any other tic borne diseases. I did test + for HHV6 and Epstein Barr. Personally, I don't think I have Lyme...I believe it is a spirochete that has yet to be named. Hope this helps. Do you live near a Fibro and Fatigue Center? My doc is

very good, but I think Molly's wasn't a Lyme expert. I have found though, that the FFC's generally follow the same protocol. I am on Diflucan, Nystatin for the yeast that often coexists with Lyme as well as 400 mg of Doxycycline and Plaquenil to attack the spore form. It is very interesting that 10 years ago when this all began my doc kept saying he saw spores under the microscope. Perhaps they weren's yeast --- perhaps they were a spirochete. Good luck with your treatment. Get started ASAP! Love, Sandi

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