This and that

Submitted by Jennifer Hopeful on Thu, 2013-05-09 08:00

This post may be a hodge podge of info to keep track of things I may otherwise forget:

It's almost two weeks since starting NAC at 2400mg/day. I can't determine if I'm reacting to the NAC, certainly nothing like others have experienced. My symptoms right now are very mild achiness and sinus involvement. I am not ready to say I'm reacting to the NAC, because it's spring and the change of weather often brings on these symptoms. The only real difference that I felt, which may be significant, is that my head felt like a grape that someone was gently rolling between his fingers. That sensation has since disappeared and I'm left with the occasional brain twinge.

I'm still waiting to hear back from my doctor for her opinion on this theory and protocol. I emailed Dr. Stratton for his input, to which he said he'd be happy to advise my doctor should I test positive for CPn. Odd as it may sound, I'm hoping for a positive so I can invest my energy in a treatment that has shown results. I want to be able to holler from the rooftop that there is hope. I have a number of friends with MS, some are worse than others. I want us all to get better. Everyone.

As I've been reading up on CPn and Lyme Disease, the drug I've seen mentioned for both is Doxycycline. This isn't the first time I've run into this drug. A few years ago my doctor prescribed doxycycline at 100mg/day for rosacea and sebaceous glands. I was on it for about 5 years, before I decided to wean myself (which was August 2012). At the 8-month mark, I can say I have a mild pinkness returning to my cheeks but the sebaceous gland problem is gone.

I wish I had known about CPn 5 years ago. It's been too long for me to remember if I had any reaction (other than beneficial) to the doxy. I'm thinking I didn't experience anything negative, since I continued dosing without fail.

That's it for now.

For at least some of that time I was on rebif with the doxy, which I now see is occasionally paired with Avonex. WHY DIDN'T ANY OF MY DOCTORS KNOW ABOUT ANTIBIOTIC TREATMENT AND MS WHEN I WAS FIRST DIAGNOSED (and yes, I'm yelling)?

- Jennifer Hopeful

MS Dx 2003
Rebif 2003-2007, Copaxone 2007-2011, Tysabri 2011-Present
NAC started 4.30.2013
CAP started 7.24.2013: 200 mino daily, 1000 amox daily, 250 azith MWF
First pulse 10.17.2013: 1500 metro 1 week/mont

I hear ya. Yell all you want :o)

I wish I had found the abx years ago. Unfortunately, I wasn't looking for alternative treatments then...I was blindly doing whatever the neurologists told me to do. If someone had come up to me back then and suggested abx, I wouldn't have listened. Everything had to fall apart and my condition to worsen enough for me to realize that I had to find a different treatment.

At least we are doing something about our conditions NOW and hopefully some day more doctors will embrace the treatment.

Hang in there.

If you were diagnosed in 2003, it’s not surprising that none of your doctors knew about abx and MS.  David had to research hard that July to find out about it for me.  The Stratton and Mitchell patent was there, but only just...................Sarah 

A Journey through Light and Shadow


Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.