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» LymeNet Flash » Questions and Discussion » Medical Questions » Seattle-Please Advise

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Author Topic: Seattle-Please Advise
NeuroEcclectic
LymeNet Contributor
Member # 17783

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31, Male-dx CT by Dr. P-upheld by UW

neuroloogist/professor of Neurology @ UW though

he does not treat it.

I was dx with Neuroborreliosis 4 years ago

though I was infected 10 years ago.

I am not a newbie but I want some advice from

fellow lymies.

I have been through the LLMDs or LLNDs in WA. I

ended up losing my ability to walk while being

treated by 1 of them last summer. It was awful.

It was scary.

The Schardt protocol got me on my feet in 3 days

after being bed-ridden for 6.5 weeks.

There is Doc E in WA and he seems awesome. I can

no longer afford him. My personal doc has taken

on the task. We are learning together.

My gait/balance are still an issue. I barely

notice when my hands/feet are topically numb

because they have become a part of me.

A neuro-physiatrist at Swedish Hospital that

specializes in MS has agreed to let me go to her

for care for neuro rehab. Does anyone know if

this works?

SDo I have any chance in reclaiming my life>?

~Px. John.

Posts: 123 | From Seattle, WA | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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Is the infection still an issue? If so, the infection must still be treated.

Coinfections? Were you assessed not just for other tick borne infections but also other chronic stealth infections like Cpn, HHV-6, etc. Could you be assessed for XMRV? There could be more to this than just lyme.

While rehab certainly has benefits, in varying degrees all along the way, if ANY stealth infection is still at work it could be an exhaustive waste of time and money.

If the infection(s) not an issue but damage repair the only consideration, you can see how far rehab can take you.

Mitochondrial damage from lyme is a real concern, though, so if rehab pushed too hard, back off a bit and be kind to your body. It would be best if EVERYONE you work with is lyme literate so that they will not push beyond the point of safety.

Lyme changes everything about a person's body. Everything. Most health care professionals have no clue that even someone who may be over the infection part but needs rehab needs a different approach than someone else who did not/does not have lyme.

Gait/balance issues often involve the vestibular system (inner ear) for lyme patients. Would whomever you work with be aware of all that? Have you been assessed by an LL otoneurologist (an ear specialist with extra training in neuro.)?

Have you tried Qi Gong and Tai Chi, as a start? These can be adapted in so many ways and they often work very well for everyone. There is also kind of Tai Chi done in the water with a therapist. Very nice, I hear.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
NeuroEcclectic
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Member # 17783

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Thanks Keebler. We have done Flucanazole-break

Septra-break aflucanazole, etc. Next is rocephin

(SP?) injections. I know that it is inhibited

but it is in no way completely gone.

BTW-WA Friends. My e-mail address is

[email protected] please let me know if

there is a support group.

~PX, John.

Posts: 123 | From Seattle, WA | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
NeuroEcclectic
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BTW Keebler. What is Mitochondrial damage?
Posts: 123 | From Seattle, WA | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
Keebler
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To find a lyme support group:

http://www.lymenet.org/SupportGroups

=================

The Qi Gong folks have lots of people in Seattle. Soaring Crane Qi Gong is the style most suitable but there are also many other styles. A certified instructor is best. They can then suggest practice sessions led by those certified to teach - or DVDs.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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Mitochondrial damage? WAY too extensive topic for me to get into -I'm very tired right now. But it is a very important issue to learn about in relation to lyme.

Sorry. Someone else?

Not at all about how LYME affects mitochondria, but some general detail:

=======================

http://www.vrp.com/ArticlesSearch.aspx?k=Mitochondria

Articles Search results for Mitochondria

------------

http://www.vrp.com/ArticlesSearch.aspx?k=Mitochondrial_Myopathy

Articles Search results for Mitochondrial Myopathy

===============

PDF: http://www.cfids.org/sparkcfs/working-out.pdf

HTML version - without photos for easier printing: http://tinyurl.com/4qevgl

WHEN WORKING OUT DOESN'T WORK OUT

By Dr. Christopher R. Snell, Dr. J. MarkVanNess and Staci R. Stevens, et.al.

From THE CFIDS CHRONICLE SUMMER 2004
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
NeuroEcclectic
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Member # 17783

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Thanks very much for your time Keebler.

The protocol of German physician Fritz Schardt

seems to be working for me, ps.

Posts: 123 | From Seattle, WA | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
hopeful4
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Hi Neuro,

I sent you a PM.

Posts: 873 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
   

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