Need Guidance Re: abx

[DenverCO]

I am very interested in starting antibiotic therapy but my brief attempt at research has left me overwhelmed. Where do I start? How do I find a doctor if my neuro won't help me? I'm in an HMO so if I have to go out of network and pay privately are the drugs expensive? What is the test for cpn? Is that a necessary step? Does this require medical supervision or can I order the drugs from Canada and do it myself?

If anyone experienced with abx therapy can steer me in the direction of a starting point (what to read, calls to make, etc.) I will really appreciate it. I'm not a desperate newbie...I was dx in 1998 and went into a rapid SP tailspin from 2004-2007. Novantrone finally stabalized things, but I am stuck with major walking difficulties (forearm crutches) and trunk weakness. I'm so sick of this, as I'm sure many of you can relate...

[SarahLonglands]

Hi Denver,

The best pace to start for clear information is here:

http://www.davidwheldon.co.uk/ms-treatment.html

Number 2 is a pdf file which can be printed out and taken to show either your neuro or primary care physician. If you send me your email address I can send you a couple of papers published in medical journals, written by my husband, Dr. David Wheldon and Dr. Charles Stratton of Vanderbilt University. These can be used as well. I can also send you contact information for both Stratton and Ram Sriram, the Professor in Experimental Neurology at Vanderbilt. Your neuro might care to contact him because a Harvard neuro has already been so impressed that he has sent him a patient:

CPn Help/neurologist_now_a_believe

If you join CPn Help, you can ask if anyone knows of a doctor in you area willing to prescribe, but if you are SPMS, you might well find that your own pcp is willing to help, especially if given the info above. Quite a few people do buy the stuff themselves but it is always better if you can get someone interested to watch over you.

Best of luck in your quest!

Sarah

[MacKintosh]

Hi, DenverCo -I started antibiotics before I was tested for cpn. When I couldn't find a doctor, I ordered the meds on the internet, but found a doctor before I started taking them (I used them for backup if I didn't pick up my refills in time, so they weren't wasted). By the time I asked for the results of a cpn test, which was done a week or two after I started on this treatment, it was a year later. I never saw the numbers, but was told on the phone that I was 'postive'. Since I was so much improved and had moved on to the doctor who prescribed for me, I never went back to the original doctor at all.

I agree with Sarah that Dr. Wheldon's site is a good place to start, only because it's direct and clear. He write like a normal person and a normal person can understand him. If you don't have the site info, search: David Wheldon multiple sclerosis chronic infection. You have enough experience to know whether you want to investigate the cites and papers listed there. I normally advise newbies to ignore them and read for the 'meat', then go back and investigate the links and citations once they understand the basics of the disease and the treatment.

Look for a quick private message, as well...

[Rudi]

Hi DenverCO,

I've develop ms relatively recently, but I hope I can be of some help. I think I've had a cpn infection for about 10 years.

What is the test for cpn?

Many users of the website CPn Help/home have reported draining sinuses and sneezing fits after starting to regularly take 600mg NAC morning and night. I certainly found this to be the case.

A rational for why this might happen can be found at http://www.davidwheldon.co.uk/NAC.html

It seems like trialling NAC for a little while to see you have a reaction is a useful diagnostic test. I think there might be an academic paper being written about this test at the moment. Though from what I gather most physicians treat empirically for cpn.

Hope helpful,

Rudi