Multiple Sclerosis

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Multiple Sclerosis

Trying to navigate through the winding path of MS....

When I was first diagnosed with RRMSi last June, I was SURE there was something I could do. I started to research anything and everything I could find on MS, and I think I became more confused the more I read. Somehow the peices didn't fit neatly together the way I would have liked them to, so I began my journey for answers. I immediately adapated my diet to the Swank approach, exercised, and kept my stress levels down. I discovered Low Dose Naltrexone and decided to give it a try. Bot oh boy was I surprised when I started to feel better. "Why don't more folks give this a try?", I wondered. Then, in December, after trying the inclined bed therapy, I discovered why. My feet went numb. Within two months, the numbness morphed into pulsing sensations.

Pulse 27 - still a rough ride

I've just finished the first half of pulse 27. This follows a very rough fortnight recovering from the last pulse. I had increased the last two half pulses to 4 days metroi per fortnight, with the addition of caffeine. This proved to be too much and I am still dealing with the high amount of die-off. Bearing this in mind, I have now reduced the pulse to 3 days. I have also increased all the methods of helping to deal with die-off and I intend to try psyllium and bentonite as I'm not clearing my system quickly enough. Unfortunately charcoal and chitosan seem to constipate me badly, hence the bentonite.

Doctors in NY

Can anyone point me in the direction of a Cpni friendly doc in NY? I'm in Albany but will travel. I was diagnosed with RRMSi last June. Any input would be appreciated!

Jenn

Ella's adventure in Katowice

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The persistent tortoise

This is a very short blog about a tortoise in the slow lane. For many years (how does this happen? - we shouldn't blink!) I had a solitary discussion about arthritis:

(1) I was getting very old very fast. (I was 55) and everything hurt.

(2) My hips are in agony.

(3) My fingers and shoulders hurt all the time.

(4) My neck is so stiff that I can't turn my head.   It hurts even when I don't try to turn it.

Most of my joint pain went away while I was "sleeping" that first couple of years. Then my hips were incredibly painful during walking - then it went away. My finger joints were worked on one at a time and have slowly stopped hurting, though still have  some residual swelling, probably permanent, which I accept.

At last, official approval of Vit D

Well at last there is official recognition of the benefit of Vit D supplementation for MS. Went to see my neurologist yesterday for my yearly dose of patronisation and a pat on the head, to be told that yes, we are recommending supp doses of 10000 iu of D3 per day together with essential fatty acids. A bit of a turnaround from the last visit when I was told that vitaminsi weren't important, they're just voodoo. RED you surely are vindicated.

NIH and PPMS

My doctor sent me a brochure thinking that I might want to participate in this NIH study of PPMSi. I don't, but I found the following line from the brochure interesting:

"In PP-MS, the brain cells die independently of an attack by the immunei system." 

It's the only part of the brochure that makes any sense at all.  Nice, huh?

Lokking for a Dr. on the West Coast

Hi, I live in Oregon was Diagnosed with MS 6 years ago. I also tested Positive for Lyme. I had to go all the way to Conneticut to get antibioticsi, after 90 days of IV Rocephini and then staying on oral antibiotics I got better all 11 lesions in my brain cleared up. Stopped taking oral antibiotics and it all came back 13 new lesions. Drs here in oregon still wouldn't try antibiotics so back to Conneticut where my Dr decides its no longer lyme but CPNi. I am doing ok on the CAPi protocal, but my Conneticut Dr now will not return my calls and has never sent my local Dr his Report. I spent almost $3000 dollars on that trip, I am so disapointed.

Books and a Movie

Many times I read for the great pleasure gained and to satisfy my curiousity, but I discovered Greg Mortenson, Three cups of Tea, and now Stones into Schools. Along with wishing the Nobel Prize for Medicine for our cpni crew, I wish the Nobel Peace Prize for Greg Mortenson. And I am hardly ever much affected by movies, but last night we saw "Seven Pounds", with Will Smith, and will probably be affected for the rest of my life.

As for my own cpn protocol against PPMSi, I still chip away daily with my five abxi plus caffeine. We all tweak and listen and tweak some more, but I seem to have stumbled on a tight turn of the screw, thanks to John (farandwide) and Paul.

Other stuff

My wife was diagnosed 18 months ago with ms. Her symptoms weren't severe but were getting worse. Leg problems, fatigue, flickering eye. 
She went on rebif. 6 months later MRI showed more lessons. So her doctor changed her to Copaxane. Her fatigue was getting worse. I felt I was losing my wife. 

After the change to Copaxane there was not real change. 

About 4 months ago we were finally able to get a prescription for LDNi. The change has been profound. She is no longer fatigued, no ms related issues at all, a couple of nights of interrupted sleep with one weird dream but thats it. 

Effect of Mannitol?

When I started on the CAPi, I had not had M.S. as long as some of the others who post here.  Also, my disease was not as severe (EDSSi of 2.5) as others.  Nevertheless, after a somewhat rocky start, I made very rapid and on the whole consistent progress.  

From time to time I have come across articles such as: http://www.nature.com/jcbfm/journal/v16/n2/full/9590040a.html< and http://www.thamburaj.com/bloodbrain.htm< which discuss the use of mannitol to temporarily "open" the blood brain barrier (i.e. make it more permeable).  

What you leave behind

I last completed a maintenance pulse in November 2009. 

I had my annual visit with the neurologist at the medical school in Houston in January 2010.  EDSSi now "about a 2" versus the "about 2.5" it was in January 2009.  As he considered my progression (or lack thereof), he asked whether I was taking antibioticsi.  I told him none since November 2009 which left him scratching his head since he can't account for my "atypical progression".  (For the record, I previously discussed antibiotics with him and he dismissed it since he is of the belief that M.S. is caused by a virus).

Wanted to update and have some questions too

Hi !

 

Im on my fourth day of my first flagyli pulse. The reason i didnt only do only one day is because ive only been sick for about 6-7 months. Much like Sarah on this forum my MS is very very progressive untreated. Im PPMSi, which means that, as far as i know, there is no buildup over the years of cpni, it kind of just hits you one day, beofre this day i was fairly healthy but not 100 percent. Ive been on Wheldon CAPi for about 2 months (NACi 6-7x600 daily, doxyi 200 daily, azitromycin 250 mg just upped to five days per week). Before this i was on amoxy for about a month and monotherapy of doxy about one month.

Whatever is Required

We spoke to Dr S just now.  He was approving of my going back on flagyli, and, because of nausea, cutting back on caffeine. 

A couple of interesting and heartening bits came of the conversation.  One is that I will continue with this protocol for another three months and call him again, sooner if there is news either way - worse or better - because I still react.  But... my daily reaction is nowhere near five years and four months ago.  For example, today is Azithromycin day - and Doxyi, Rifampin. Amoxycillin, flagyl, and caffeine. 

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