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my story...

Ok, my name is john. i'm going to try to write this quick and keep it relatively short because my thoughts come and GO pretty fast. i've gotten used to it and it only irritates me in times like this when it's important for me to get the thoughts on the paper fast. I'm here because of a friend and a discussion that we were having about the length of time someone can have these problems and still be moderately functional as a person. JimK's name was brought up because apparently he had this problem for quite some time. i would have written him directly but i thought it would be more appropriate to do this...

Need to talk to someone soon

Need to talk to someone soon.  I'm feeling a little desperate at the moment.  Don't know how to IM, willing to learn or willing to just e-mail back and forth. 

New kid on the block: Glad to find you!

Hello everyone-I'm so glad to find this site and others who understand what I'm going through!  I have suffered for at least 17 years with various illnesses that I now see may all be related to CPni.  My most recent addition to the plethora of illnesses I've experienced is severe tinnitus">i with 5-10% hearing loss. I recently had to purchase hearing devices, $3000 worth to drown out the ringing noise as it was driving me insane, literally! Finding out about CPn has made me feel like I have found a gold mine, thanks to my doc, (MD and toxicologist) that knows how to think outside the box. Sure has given me renewed hope. I actually found out I had it after my friend was diagnosed with it.  I had referred him to my doc as he had been experiencing CFSi and ADD symptoms.

Since we take so many supplements and glucose, I found this interesting...

Hopefully, this is only true for worms. But, if not, if we don't have to take so many supplementsi and glucose, other than to survive CAPi, we'll be OK, right?

From Reuters<:

'Life can be sweeter if you cut out the sugar

By Michael Kahn

LONDON (Reuters) - Giving up sweets and avoiding vitaminsi could help you live longer, German researchers said on Tuesday.

Recreational Drugs

No blowouts this time and our faithful diesel cruised to the show. But the fair people had forgotten to stop the entries at the usual limit of 300 goats, so we were crowded at 480. We have French Alpines and the basic Alpine philosophy is that the last one left standing is the winner so we were very busy with keeping everyone occupied with something to do. Treats, new hay often, back scratches, peanuts, and for the really determined basher, a little water in the face - the penultimate insult.

Funny Parody

This is posted on a well-known physician's web-/newsletter site and is considered controversial... LOL.  Personally, I think it's right on ....(especially now since the FDA is wanting to control our vitamins!). .. some of you may have seen it ..<

I Need a Nail

This is another of those combined blogs, one by author, one by proxy, two by confusion, too confusing? Not for us. We know how to deal with the confusing, the confused, and the unexpected: give flagyli.

I Never Promised You a Rose Garden.....

But a Daisy will do very, very well. This is at Daisy's request and has been on my mind since she asked. I realized it will be long and will need almost daily editing as I think of more improvements, so please forgive me if I bring it up too many times. Just tell me to stop and I will. Daisy asked me to enumerate in one post the improvements since I began this incredible journey. First was return of energy, not all at once but when you are starting from near zero, ANY feels really good. Now my bladder works on demand, though it took a long time.

B12 and MS again

B12  and MSi again (B12 basisc 7, last one) Maybe some of you think I am only repeating  what is already been said but I think this is really important. It just won’t leave me alone.

I can’t stop wondering if some people need much more B12 than the recommendation in the cpnhandbook

this post has been removed by Odhilda


B12 basics 4,5,6

4. Folic acid

B12, before I continue

Before I continue maybe I should say that biochemistry is not really “my cup of tea”. I dive in to it only beacause I have to, if I want to understand certain things that I want to understand, like why B12 is so important and why it can cause so many different symptoms if it’s absent in the cells, and why some people need so high and frequent doses to feel the effect of a B12 treatment..

 I also feel that if I have information that helped me very much, it would be wrong to keep it for myself .


As Joyce has said "What a bizarre group we are". The title of this blog stands for: Blog By Proxy - Blood Pressure/Gum Disease. For years Dr R (Richard) has fought bad breath and gum disease with meticulous attention to an heroic dental routine and visited the dentist alternating with the periodontist for a total of 6 times a year. His gums have inexorably receded and bled. Several months ago in a matter of a few days, his bad breath disappeared, becoming almost overnight as sweet as a baby's.

My Four Year Blog

A new signature for a new year!

An Itinerary in Light and Shadow  
Finished Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSSi was 7, now 2, hopefully will soon be less.
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