My Adventures in MS

Tell us what you are using to treat your MS-- and how you are doing.

Postby Katman » Tue Oct 11, 2005 11:14 am

The problem with listing names is that someone always gets left out! It is like listing all the princes and princesses and forgetting the king and queen! Thank you David and Sarah for getting this boat afloat!

Roy, thank you. How are you? We are interested in any reports, no matter how small you may think it is. I vividly remember your finger-snapping of last week.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Tue Oct 11, 2005 11:17 am

8O Hey, what about us??? Only joking! Congratulations with the goats: I'm amazed that you managed to do it all and get all the awards. Well done!

Sarah :)

EDIT: YOU BEAT ME TO IT! :oops:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby kitkat2 » Tue Oct 11, 2005 1:36 pm

Hey Katman! This is GREAT news!! So happy to hear about the successful show, and that you participated so completely. No doubt, that is a big job.

Makes ya'll feel like yourself again, doesn't it? Working with animals is great for everyone, but I have found it to be especially true since my ms dx. {i now have 4 cats and 2 jersey woolly bunnies--a joy!] So therapeutic.

Still anxiously waiting for my "drugs" to arrive. Overseas parcels can take 2 wks. :(
But I am standing with you all, hoping that our combined efforts will bring lasting health to all.

Kitkat2 :)
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Postby MacKintosh » Tue Oct 11, 2005 1:59 pm

KitKat2 -

I, too, am still waiting for doxy to arrive. Before I obtained prescriptions from the world's most understanding doctor, I ordered doxy on the internet from a reputable company. It's been two weeks and I'm assured by email that they will be delivered today or tomorrow. (Of course, I've been on the Wheldon regimen for nearly a week now, courtesy of prescription drugs!) - - - Be patient. I feel better today than I have in months! Don't know if it's the vitamins or the antibiotics, but I'm having one of those 'blue sky, nothing-can-go-wrong' days and it's grey and drizzly outside. Go figure! (Thanks, David and Sarah!)
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
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Postby LifeontheIce » Tue Oct 11, 2005 5:09 pm

Hello, Rica!

I just came back from work, and I couldn't believe how many times my name was mentioned while I was away. I've decided to retire tomorrow, just so I could witness all those sweet compliments immediately after they're written.

Congratulations Rica! It's a great day for all of us, because of your success. What could be better, you have been auspicious in your health and as a shepherd! ;) You've properly advertised our site! And rest assured, you'll soon be able to run with your goats.

Best Wishes,
Barbara
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Postby mrhodes40 » Tue Oct 11, 2005 6:08 pm

Gosh! Here I am too! Man, isn't it the best present in the world to go to thisisms and see if something has happened? Who wrote today....who's better than ever? And Wow! Now we have that all important question that Bromley asked so long ago answered "is anyone noticing"? Shoot a whole barn full of people noticed, and you know what? It must have been a big difference for them to have been so alert to it. And your primary care doc is all on board with it too. Yep. It's noticeable. That's super exciting. That thread is old, but maybe we ought to open the topic again. Anyone else having "noticing" going on like this they forgot to mention?
nothing much different to date for me so far: very subtle. I'll make a regimens entry today.
Congratulations to you Rica! I'm green with envy...you lucky girl! . :wink:
Marie
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Ditto

Postby kitkat2 » Tue Oct 11, 2005 8:32 pm

MacKintosh wrote:KitKat2 -

I, too, am still waiting for doxy to arrive. Before I obtained prescriptions from the world's most understanding doctor, I ordered doxy on the internet from a reputable company. It's been two weeks and I'm assured by email that they will be delivered today or tomorrow. (Of course, I've been on the Wheldon regimen for nearly a week now, courtesy of prescription drugs!) - - - Be patient. I feel better today than I have in months! Don't know if it's the vitamins or the antibiotics, but I'm having one of those 'blue sky, nothing-can-go-wrong' days and it's grey and drizzly outside. Go figure! (Thanks, David and Sarah!)

*************

Hi Mac! Say, how did you talk to your doc about this? I haven't even tried since coming up dry three yrs ago. Maybe I should give it another chance(??) But I am apprehensive. I think I've been shot down one time too many.

Glad you found a supportive doc--that's important. My doxy should be arriving next day or two as well!

Now you've got me hummin':

blue skies, smiling at me.....nothing but blue skies do I see..

Kitkat2 :wink:
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Postby MacKintosh » Tue Oct 11, 2005 9:05 pm

KK2 - It only happened because I let everyone know I was going to do this with or without 'permission'. Believe me, the ones you think will help, don't. The ones you expect the most flak from, surprise you. And then, a miracle comes your way.

Of course, what we have here, AGAIN, is the problem with prescribing off-label, so the doctor must remain anonymous (at least until we all have our proof and our ultimate vindication). I think the whole thing stinks. If I'd said I had acne, I could get the doxy presribed in a heartbeat, like any teenage girl can. Duh!

Anyway, you have drugs coming, so you and I can compare notes. I'm nearly a week into it and I have zero reaction to the meds, thus far. If a 'blue sky' day, which I've not had in over a year, is a result of the meds, I'm a perfectly happy camper who's looking forward to more of the same! Keep humming..... (Oh, and swallow the doxy fast; it tastes like metal in your mouth!)
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
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Postby whyRwehere » Tue Oct 11, 2005 11:37 pm

Hi, I just wanted to add a few words about the difficulty we have in getting harmless drugs (LDN, abx...) VS the ready availability of "poison".
My husband was given a drug for "anxiety" and a bit of depression (not without cause!), and after one dose, we decided it was a BIG mistake...what do these drs think, prescribing willy nilly something that is potentially addictive, makes you feel ill, and can alter your brain for good(well, for bad really) 8O :( :x ...
And when you try to heal yourself, you are treated like an idiot. :(
We'll be trying to start ABx soon...can't wait.
A
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Postby SarahLonglands » Wed Oct 12, 2005 3:00 am

(Oh, and swallow the doxy fast; it tastes like metal in your mouth!)

Yes, and wash it down with plenty of water because you don't want the capsule dissolving in your oesophagus because the doxy is too caustic. :o
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My Adventures in MSDear Friends

Postby Katman » Thu Oct 27, 2005 6:52 am

Dear Friends

So happy to br back, but I don't see recent notes from Roy, Guner, Marie, or MacIntosh to name only a few of this most interesting clan.

For myself, I have to report that I added Azithromycin 3X a week about 4 doses ago. My body said "no problem". I do take Avonex and forgot to pick it up yesterday so I am a day past but I was so busy putting up winter walls on the barn and cleaning house I didn't even think of it. My WORST day now is much better than my best day of the week six months ago.

Fopr those of us for whom this works, it is so worth any inconvenience. However, I have to confess that I ate FAIR FOOD and feel no guilt. I had a corn-dog (yummy), french fries, and fried shrimp. We also won Best Jr Doe in Show, Best Sr. Doe in Show, and Best Dairy Herd in Show with over 400 goats in the show. Pretty exciting! It was also 450 feet (each way) to the restaurant or the bathroom or the showring and show I did!

I saw my new neurologist last Monday- the one I confronted at an MS dinner and asked if he knew anything about abx for MS. Very little. He knows more now and will visit our sites. I will see him again in 3 mos. -"since I am doing so well."

It is now almost 14 months for me on abx and supplements. I feel better than for the past 10 years and am almost back to the summer of 2002 in physical abilities and mental capabilities.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby MacKintosh » Thu Oct 27, 2005 7:42 am

Ah, Rica! What good news! Between your health and the prize goats, you have an overabundance of things to be thankful for when that turkey goes on the table next month!!! (The corn dog sounds wonderful, as well; I've been so religious about what I've eaten since I started the abx, it's good to just HEAR the words 'corn dog'!)

No news on this front. I started vit/supplements a month ago and added abx on 06 October. I've had near-zero physical reaction to abx, tolerating it very well. Side-effects: 'stuffy' ears, runny nose, something very difinitely affecting my sinuses and once, a weird bell or gong-like ringing in my right ear (have had low-level tinnitus since I was nine). Brain fog went away in the first week, for which I am eternally grateful. Temp varies from 98.2 down to 97.0 (last night, which is the lowest I ever recall it being). I'm not posting much here because I'm on CPn Help.org so much, educating myself, and, like everyone else, the better I feel, the busier I get (not that you'd know anything about that :wink: )

All the best - MacKintosh
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
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Postby mrhodes40 » Thu Oct 27, 2005 8:37 am

HI Rica
Once again you have given me heart. Know what struck me this time? Confidence to eat what you want at the fair! Some people imply that eating odd diets cure you though I do not know a single soul who has had MS for long time that did not use peculiar diet manipulation for a long time, and maybe even ongoing after progression (though many give up there). I eat an odd diet and take many supplements, and have rarely strayed in 15 years, yet here I am: SPMS. Years and years of saying "No" Did it help me? I like to think it delayed the progression, but I do not know that.

I'm going to tell you a secret shhh don't tell: We went out about 10 days ago to a famous seafood restaurant and I ORDERED WHAT I WANTED! Like you, I have let myself out of food prison. Wow, I felt free! The food was very delicious. I had fried halibut with hollandaise, baked potato and sour cream with bacon, and GLORY BE! a piece of chewy sourdough bread with butter on it! All that dangerous fat, dairy food, butter and bacon. I was fine. Not tired or weaker the next day, just relieved and free. I have been less rigid about what I eat, though I do not eat much gluten since I am truly sensitive (tested).

I love the quantification of being "back where I was in '02" That says a lot! Once again, this is unheard of. this is no remission! It is not possible to have remission after 2 years it is generally accepted.

So here's my questions to you. DO you still get better every flagyl pulse? Have you tried PT to see if they can target long quiet areas for strengthening? Do you use a cane now ever? Do you fall anymore? If you went to Hawaii would you attempt to to go to Waimea falls on foot? (OK so that's what I want to do, just thought I'd slip it in since I'm not here yet... :D )
Marie
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Yay Rica- Thanks for your corn(dog)y posting

Postby Jimk » Thu Oct 27, 2005 10:31 am

Rica- So very good to hear your progress report. That you feel better and better on the abx is a support for all of us persevering.
Mac- all your side effects are familiar to me: the stuffy and ringing ears, etc.. I just wish my brain fog was lifting as readily.
On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help.org
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Postby Katman » Thu Oct 27, 2005 10:42 am

Hi Marie

Yes, I would do the falls on foot. It is is SO funny that you asked me that! My 4 sisters and I have been trying to get together for mos. and have given up for this year. My dtr (a veterinarian in CA invited my husband and me to go to Hamaii and asked if I thought I would do the falls. I told her reluctantly that we would not, could not go. Truly, the "cure" demands a great deal of my time and energy and I feel enormous responsibility for our animals. Being gone that long and that far is simply not acceptable to either one of us. We're weird but very, very happy in our small, exciting world. Our friends and family are always welcome here but the longest trip we take is the National show and we take our goats.- the milkers, anyway.

As for your delicious dinner, good for you! You don't do that every day and neither do I. but-- it is called "vacation". Whatever form it may take, everybody deserves one!

No, I do not ever use a cane and I have not fallen for months and months. The person I gave it to really needed it. My walker is in storage and waiting for the right person. As for PT, I really get lots of exercise: in every day is lots of walking, weight lifting, endurance...at least 3 to 4 hours. Sometimes by the end of the day, I am VERY slow but can now move BOTH feet fast enough to catch myself. And Flagyl, that wonderful, hated stuff. I am due next Mon to start my 13 th pulse ( I think 13) No, I sometimes get a little worse for a while or the same. Hard to tell sometimes. Right now, the week before or 2 weeks after, I feel GREAT! I just spent 2 hours working outside clinbing fences, wrestling 4' by 8' pieces of old aluminum roofing that we put up for windbreaks in the winter on the barn and yes, I did it by myself, unless you count the help from the goats.


Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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