MS and Japan

I have lived in Japan for two years now - my plans for coming were set before my diagnosis. I began Rebif while in America, but it proved to be an expensive monthly hassle to get across the ocean and through customs. I soon switched to the BBD Diet, but after a major relapse about six months ago I began looking for something else.

After my big relapse I began looking for a neurologist who would be willing to help me begin the Wheldon protocol. Reading of the many roadblocks set before those with the disease in MS-prevalent countries, my hopes of finding an open-minded doctor in Japan were slim at best.

But wouldn't you know it; finally got dealt a lucky hand - the first neuro I saw was completely willing to give something a little experimental a day in court. I brought him three convincing (I hoped) pieces, including the Wheldon protocol, to my second appointment, and by the third he agreed to work with me. He wanted me to wait to have an MRI taken, to establish a baseline, since he had no experience with this treatent (had never even heard of anything like it) and the same day I got my first script for antibiotics.

 Anyway, to the point . . .

 If there is anyone else in Japan looking for a willing doctor, please message me and I will do my best to help out.

I thought of sending a message to Dr. Wheldon, in case he or someone he knows keeps a database of CAP-willing doctors, but it seemed a bit presumptuos. Thoughts?

 Further notes on MS in Japan:

 - Anecdotally, it seems a bit more common to me in Japan than I assumed it would be - my neurologist said he is currently treating 20-odd patients in this admittedly backwater prefecture of Japan.

 - The Japanese government currently has a plan for those in the national health care system with MS. Since most of the doctors in the country have little experience with MS, the government is willing to make a trade: you allow them to follow your disease course through your doctor and they will basically pick up the tab. The maximum amount I would have to pay per month is about $50. Two days ago an MRI and my first month of ABX cost me $50. I should know more about this plan, but I can't read Japanese.

  - The basic antibiotics called for the the Wheldon protocol are available in Japan, but there is a bit of an issue with Azithromycin. I'll be on Doxycycline, Roxithromycin and Metrodinazol.

 - Supplements are expensive in Japan, I brought as close to a years' worth as I could from the States and I'll have to get more shipped in.

 - I'd love to smoke some weed to see if it had any effect on my MS (ah, the nostalgia wouldn't hurt either), but it is uber-criminal in Japan. 30 days in the clink for a speck.

 Hope someone who could put some of this information to good use will find it someday.

 

 

Say I'm glad you got it going there! Sounds like a good plan with the abx you hvae. I am glad they are treating you this way. It sounds like they are open to simply solving it rather than lining the pockets of any particular pharma? How refreshing! And isn't it interesting the BBD should be a Japanese diet, really if you avoid the soy....I also did the BBD for a few years in the early days , no help here either! Good luck to you!

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

yuzuru - Please send your physician information,, by private message, to our member Michele (that's her screen name, note it has ony one 'L'). she keeps our meager list of prescribing physicians and will love to receive this info!

Best of luck to you!  Be well. What an amazing stroke of 'luck' you've had, with the Japanese plan. Unfortunately, with the prevalence of travel, cpn will invade Japan more readily and the incidence of the disease will likely rise there, as well.

P.S.  You won't need the weed; your MS is about to bite the dust.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

welcome yuzuru

How great you have an open minded doc for treating.  I hope you can put up your "signature" soon which will give us a peak at your dx, sx, rx status.

 

Blessings for your wellness journey!

 

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

message to Michele sent. Is this what you mean by a signature ?(I looked through some others throughout the forum - obviously it's a second language to most by now, but rx,sx,dx,etc. is still Portuguese to me).
Dx: Mar '06, Rebif - Mar '06-Mar'07, BBD diet from Mar '07 to Aug '08, started Wheldon protocol in Jan '09 - present. Full range of Suppl. Sx: double vision, diff. walking, numbness, brain fog, loss of memory, etc.

MacIntosh, could you add some of the abbreviations to the list the are standard medical nomenclature.

Rx - prescription

Sx - symptoms

Dx - diagnosis

BID -twice a day

TID - three times a day

QD - daily

QOD - every other day

HS - hour of sleep, bedtime

q.a.m. - every morning

Q.HS - every night at bedtime

PRN - as needed only when necessary

And there are more. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise, I'm not quite sure what your request has to do with the topic here, but in short, I will add a few of these.

There's a fine line between being helpful with definitions and being extremely distracting when incessantly displaying these definitions throughout a post.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

MacIntosh the poster above wrote;

Submitted by yuzuru on Sun, 2009-02-08 01:03.message to Michele sent. Is this what you mean by a signature ?(I looked through some others throughout the forum - obviously it's a second language to most by now, but rx,sxi,dx,etc. is still Portuguese to me).
These are standard abbreviations use in the writing and reading of medication treatment orders and allow more data to be put in a signature so that a member can share their progress on CAP.
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support