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Thinking of starting

Posted: Tue Mar 23, 2010 3:38 am
by jenf
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?

Posted: Tue Mar 23, 2010 9:45 am
by Loriyas
Jen
If you have not already done so, go to the website CPn Help
This site is a wealth of information and you MUST understand the antibiotic protocol completely before beginning.
Lori

Posted: Tue Mar 23, 2010 10:10 am
by jenf
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...

Posted: Tue Mar 23, 2010 2:35 pm
by notasperfectasyou
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

Posted: Wed Apr 21, 2010 8:25 pm
by MacKintosh
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