Kitkat2's "Ax"-cellent Adventure!

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

Postby kitkat2 » Fri Nov 11, 2005 3:34 pm

Thanks, gibble, whyrwehere, Melody, and Sarah,

My sentiments as well! Still early on in the prot. for me, so I have not lost heart-am in it for the long haul. :lol:

I have so far resisted steroids--never touch the stuff--do not want to start now-might mess things up.
I am looking for a new neuro, but taking my time...i am hoping to be like you, Sarah, and "not feel the need". Hoping and praying for that!
My present neuro is [near retirement] director of an ms research clinic in town. Pretty crusty. You know the type, out of the office so much that he doesn't even have an office admin manning the phone, anymore. If I made an appt today, it'd be months b/4 I'd get in[as if I'd want to--LOL! :P ]
btw, it is so true about the stress. It was almost as if he enjoyed telling me that I was worse--[very gradually declining over the past 4 yrs]
didn't seem to hear me telling him I felt improved.

oh well, who needs it? HMMM? :)
Anyway, i feel better about my decision to skip the steroids for now.
Holding out hope for Liberation!
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Steroids and neuros

Postby Katman » Fri Nov 11, 2005 9:33 pm

Hi KK2

Love your nickname. Did you get that from Roy? Fits you so I guess you're stuck with it.

My newly-diagnosed MS sent me down the usual path in July, 2004. I went to a neurologist who put me on Avonex weekly and steroids (solumedrol) for 3 days IV. Having spent much of my life practicing piano then violin I was always spraining something so I loved steroids. Always helped. Same in this case. That was the first of two times for solumedrol. I( will probably never again take steroids . Now, I don't need it nor do I see any need for a neurologist. I may revisit that one again because I really want him to see how very well I am doing and maybe it will help another or two or many because maybe, just maybe, he will believe. Sometimes, it pays to be Peter Pan.

Thanks MaKIntosh for the place for supplements. I will check over the list and see what I am missing.

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 kitkat2 » Sat Nov 12, 2005 8:25 am

Thanks Katman! Filled with hope again, as usual. Input from you, and everyone, is priceless! Worth more than it's weight in gold.
-KK2 :wink:
Holding out hope for Liberation!
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Protocol update

Postby kitkat2 » Wed Apr 12, 2006 10:53 pm

Seeing as nearly 5 months have passed since I began the abx protocol for ms, I figured it was high time for an update. Also for those who may be interested, I have suspected a chronic infection etiology for my ms since the dx 4 yrs ago, and welcomed the chance to try the protocol empirically.

I might add that it is incredible to see where I was symptomatically in Oct.05 compared to now. Back then my ears were ringing, my head felt hot, I was discoordinated, depressed, very spastic day and night even with Baclofen. I was also just starting to have some trouble with driving[spastic foot]. I was heading quickly from needing a cane, to needing a chair/scooter.

When I began the abx, I quickly was able to cut my antidepressant(s) doses in half--and happily, this has a permanent improvement. My goal is to be completely off those meds by this time next year--hope it's not too ambitious. Even during the short-term gloom of Flagyl pulses, I remain buoyant. However, one thing is extremely important when tapering off antidepressants: get your doc's guidance and go slow

This is important with the ms brain--recovery is gradual over time-be patient with your body--it will get better.

Also, I went from needing Baclofen 3X/day to only prn. In the past 4 wks, I have only needed 3 doses total![these were during Flagyl pulses] This improvement is huge for me.

I have had NO return of the leg/foot spasticity that threatened my independence In Aug/Sept '05--nothing even remotely resembling it! And for this I am so grateful!!

This is not to say that all is well every moment--My gait, which was always my biggest issue, remains a challenge that I must deal with on a daily basis.[ stretching/strengthening]. I have ups and downs--but compared to pre-protocol days, the 'ups' are obliterating the 'downs'. I can feel a pattern as well in lasting cognitive improvement in the days that follow the abx pulses. I have felt like my old self long enough now that I have started a new job--[this is something that I would not have even considered 4 mos ago]--I feel competent and it is going very well.

Though I do not have the support of my neuro, I firmly believe that my great gains are directly related to my adherence to the Wheldon abx protocol. I plan to continue on for at least another year or more...whatever it takes to avoid falling back into the pit.

KK2 :) [/i][/b]
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Postby MacKintosh » Wed Apr 12, 2006 11:12 pm

THIS POST WAS MODIFIED BY THE POSTER ON 13 APRIL 2006

KK2 - Hey! I didn't know about a new job! Wonderful! About time you updated for everyone here who's been wondering if abx was working for you! You shame me with your attention to detail; I planned to do a patient story here, but the details of being in such a downward spiral last August are starting to vacate my brain, which is now being filled with way too much in the way of research, medical studies for cpn and scheduling a visit with Rica and the goats in June.
Last edited by MacKintosh on Thu Apr 13, 2006 12:14 pm, edited 1 time in total.
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Postby SarahLonglands » Thu Apr 13, 2006 6:17 am

A new job! What good news.

This is important with the ms brain--recovery is gradual over time-be patient with your body--it will get better.


This is important for 'cidal abx as much as reducing antidepressants. I hope everyone takes heed. You didn't mention here that you had changed from flagyl to tinidazole. It is much kinder to take, isn't it? Just as effective as well, just newer and so a better design, like computers.

Sarah :)
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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Yaeyama Chlorella

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