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 Post subject: Thinking of starting
PostPosted: Tue Mar 23, 2010 4:38 am 
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Family Elder

Joined: Thu Sep 17, 2009 3:00 pm
Posts: 103
Location: Albany, NY
Hi everyone,
After a failed attempt down the CCSVI road, I've decided to explore some new options. I've been trying to educate myself as much as possible on Cpn and the abx protocol. I registered with the ILADS website to get some Lyme doc names in an attempt to find a local doc who will treat. I've found a handful, but none that accept my insurance. If I can't locate one who will, I am considering going to Vanderbilt for an evaluation/consultation. I'm wondering if anyone who has done this can offer some input. I've only been researching this for a few weeks, so I'm still pretty rusty and trying to get up to speed. I've considered buying online, but on the brink of starting a DMD, I'd like to be monitored by a doc since I'll be mixing drugs. Any thoughts?

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..


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 Post subject:
PostPosted: Tue Mar 23, 2010 10:45 am 
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Family Elder

Joined: Sun Apr 02, 2006 3:00 pm
Posts: 545
Location: Naples, FL
Jen
If you have not already done so, go to the website www.CPn Help.org
This site is a wealth of information and you MUST understand the antibiotic protocol completely before beginning.
Lori


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 Post subject:
PostPosted: Tue Mar 23, 2010 11:10 am 
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Family Elder

Joined: Thu Sep 17, 2009 3:00 pm
Posts: 103
Location: Albany, NY
Hi Lori,
Yes, I registered on the site shortly after I began researching Cpn. I've finally nailed down an appt with a Neuro who reportedly does not take an MS diagnosis lightly, and who will make sure he knows what he's dealing with. He's also open-minded (from what I've been told) and has followed the Vanderbilt research. I have to wait until May though, which right now feels like an ETERNITY! ugh...

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..


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 Post subject:
PostPosted: Tue Mar 23, 2010 3:35 pm 
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Family Elder
User avatar

Joined: Thu Feb 09, 2006 4:00 pm
Posts: 771
Location: Northern Virginia
Welcome Jen.

Lori is on it. There's a lot of info there. Please feel free to ask questions here too. We'll do what we can to help. Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />


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 Post subject:
PostPosted: Wed Apr 21, 2010 9:25 pm 
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Family Elder

Joined: Sat Sep 24, 2005 3:00 pm
Posts: 439
Location: Chicago area
Jen, I remember the 'eternity' of a wait for a doctor! When I was diagnosed in August of 2005, I went a little crazy, researching, researching and researching, every waking moment. I found the info about cpn around the same time I found several articles about a famous MS neuro in my city.

I began the abx (antibiotics) protocol in October, around the same time I called for an appointment with the famous neurologist. The first appointment I could get with him was in January of 2006, more than three months later. I was a basket case. I wanted that appointment more than I wanted anything in life. (Funny, the difference a few months can make. By the time I saw the neuro, I was so much better, he asked just why I was there. I scored zero on the EDSS. )

All I can tell you is, the time will go by in a flash. Give yourself a head start and begin taking the vitamins and supps, especially Vitamin D3. NAC is liver-protective and will help your body process the abx and the toxic die-off of the bacteria. Read as much as you can absorb (it gets to be a bit much at first). Print out a little bit of rudimentary cpn stuff for your doctor and get your medical records together for the visit.

Poof! Look! It's almost May!! :D

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi


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