This Is MS Multiple Sclerosis Community: Knowledge & Support

[Jaded]

Rica

So pleased that the regime is working for you.

I wish you continued progress...please keep us updated.

J.

[natgas]

Hello Katman

Congratulations are in order. Sounds like you done very well at the fair.

The abx is doing well also, that's grand.

Roy

[yguner]

Hi Rica,


It is wonderful that you are improving.As one of the ppms patient i know how this disease progress and how far it can go without a remission.I am so glad to hear that you dont need a cane anymore which i think is a major improvement.
For me the improvements didnt start yet but the progression stopped in its track.I will update my thread shortly.

Best wishes;

Guner

[Katman]

Dear Guner

We have all been holding our breath waiting to hear that from you! I think I can speak for all of us in that very small club of PPMS in which we do not wish for membership. I do tend to UE but I believe that is an unequivocal sign of improvement. You have to stop before you reverse. Just now as he went out the door, I told my husband of your lack of progression and understater that he is (like all doctors) he got all excited and said "That's good!" It is truly wonderful to hear from you with such news.


Rica

[Katman]

Some time ago, I was so grateful for the progress I had made that I said I would be happy at that level. Little did I know how much more was to come. It is now 10 days since Avonex and I am better than I used to be at the best day of the week a year ago with weekly doses- the prescribed rate of injection. This has become the best indicator of my progress- do I need it or not to maintain my almost best? Flagyl takes longer than I thought to clear- probably more by at least 2 days than the 5 I have been allowing. But it may be influenced by the Azithromycin I added on the advice of Dr. Stratton when I realized that my recovery was slowing. Maybe it wasn't slowing but my awareness has become sharpened. Anyway, it has been set back on track and maybe moved to the fast lane. My well-being is at a new level, enhanced by a particularly vivid dream of running. I woke up and saw that I was lying down and was only a little disappointed. I believe also that I am gaining some sensation where shingles were (was?) on my right rib cage. I said for 9 i/2 years that I could skin myself there and not feel it. That certainly is not true now. Since we now have obligations to our other site, I must cut this short and help broadcast to the world this small part of our message.
My regimen of abx is now:
Rifampin 300 mg 2xd
Doxycycline 100 mg 2xd
Azithromycin 250 mg 3x WEEK
Flagyl 375 mg 3xd- 5 days- beginning every 21 days
Many supplements which my body loves. I have to admit I have a real weakness with the diet. Can't seem to do without cheese and milk. I eat LOTS of vegetables, salads, fish, almost no desserts, no red meat to speak of and I am VERY rigid about the "empty stomach" before and after abx 2xd- sure makes you appreciate food! I have become fairly comfortable with this. If I have to do it another year I can.

Sorry, MacKintosh, for butchering your name after your help!

Rica!

[MacKintosh]

Rica - You can call me anything you darn well please, as long as you keep posting great news like this!!! MacKintosh

[kitkat2]

Hey Katman!!
I just want to add my congratulations to the mounting pile! I am happier for you than you could ever imagine!~ Two reasons for this: 1. Your quality of life is continuing to go up, and 2. that maybe there is some hope for the rest of us!

I really mean that. It's only been about a month for me, but I have noticed good things already and I'm excited at the prospect of dancing the tango with my former neuro just before I fire him.

[Katman]

Now, be nice, KK2. By the time you are physically ready to dance the tango, you will want to show him that you can dance and it will be so good you won't care about his skeptcism. They can't help it! They learned it at the attending's knee.

I understand the happiness- that is what I felt when I was sent to this site by David Wheldon and found that there were other brave (or stupid) people out there. Turned out they were brave pioneers.

Rica

[mrhodes40]

Rica said: "My well-being is at a new level, enhanced by a particularly vivid dream of running. "
Well Rica I have this dream too! I keep having these dreams of running! Anyone else? Last night it was a really good one because this time I realized that I had had some trouble walking recently but I remember saying to myself in my dream, well, I just have to practice. I haven't done it for a while. ANd in my dream I did and I RAN! If you saw Forrest Gump the movie it reminds me of that scene where the bad guys were chasing him and he got away by running out of his braces he understates it "So I ran. From then on I was a running everywhere.."

I think I had this dream because I went to the gym yesterday and I worked out for 20 minutes on the elipse, my old standby normal time. After I got done though I could STILL walk OK and I could lift up my weak leg 2 -3 inches. I am posting a regimen thread on Marie's abx log about this. Thanks Rica for being a mentor and cheeleader to those of us behind you. I agree: pioneers.
Blessings
Marie

[Katman]

Hi Marie

You have been in my thoughts many times lately. You are known for interesting and accurate postings and articles. Among you, Sarah, and Barbara, (there I go again- names) we have many bases covered.

That is a significant thing: your ability to walk after you were done on yiour elliptical, which is my almost daily piece of work. So often in the past, I had to plan very carefully my daily activities so that I would be able to get to the barn and feed our four-legged family. Now, I don't. And I can lift and bend my right leg behind me to the horizontal level. I still marvel at these things every day when I remember so vividly not being able to lift it off the floor one inch ON A GOOD DAY.

Yes, I love Forrest Gump. And I remember Chauncey Gardener with Peter Sellers. I seem to have a direct connection to mentally-handicapped people! Wonder why that is....

Her goes - confession time. I lied yesterday, unintentionally. I will check my records before bragging so blatently next time. It was not 10 days but 8 since my shot. I did not need it but had already mixed it up last night so went ahead and took it when I looked at the calendar where I write it down. I am spoiled and like staying at the top but was beginning to start a downhill slide. This does not at all denote regression but points out to me how much I did that day.

Rica

[mrhodes40]

AHA! The measurable "trend" is getting out. You said: "Now, I don't. And I can lift and bend my right leg behind me to the horizontal level. I still marvel at these things every day when I remember so vividly not being able to lift it off the floor one inch ON A GOOD DAY"

Wow this is cool. Very clear picture of the difference, I can almost feel it myself! the leg lifting back there, higher, balancing on the other. wow. And is it like this: you used to use a walker full time because your leg was so stiff and unliftable then after months of antibiotics you can walk (what well? wobbly? with a limp? and how far?)without one now partly because you can lift your leg?

A curiosity, are you doing any PT or anything specific to strengthen your leg or is it just "coming back"? Is the experience like one day it just can do something or is it more like it starts to come back and you start to do more after time of strengthening it can do stuff like this. Because logically, if the nerve has been dead for a while the muscles will be atrophied and wasted a bit. To some degree strengthening is going to be important. I'm just curious about how that develops. Because not only are you a pioneer for abx, but also for recovery.
Thank you for the inspiration and kindness Rica!
Blessings
Marie

[Katman]

A straight line is what we are aiming for, in most cases. These days I can walk 99% of normal in the morning on a good day. At night after much work I have a dafinite limp but never am I unable to walk unaided. It was in Sept. that I gave away my cane- there i go again- it might have been August. I stopped working in the barn one day last week and walked without stopping 1800 feet or more. I was not tired but needed to get back to work so I did. It only took 15 minutes and I have walked 45 minutes shopping (ugh) and still not been tired.

A few minutes ago I was doing housework and caught myself leaning over on my right (bad) leg and was inspired to see how long I could stand on it balanced. It was an easy 5 seconds. Then my other leg- 10 seconds. Six months ago I could not stand on that leg at all, certainly not without support of any kind. I did it three times- it was pretty much the same each time. Best of three is your time.

This is an easily measured test. Post results, anyone! We will all be interested. Also, we need a name for this test so it sounds official. The stork test is one....

Rica

[kitkat2]

haha Rica!

How about a "Frankenstein" rating---1-10[kind of like an EDSS.]

1, being a smooth easy gait, all the way up to 10, meaning push the smaller furniture out of the way, I'm coming through!

Hah! **tongue in cheek**

The stork test idea sounds like a keeper, though.

[Katman]

I can hardly wait til the scores come rolling in! Of course, one must be able to stand on one's feet before doing this. Maybe we should put one of the warnings that says "don't try this at home".

Seriously, I was "at least 6.7" This neurologist does not use the disability scale but told me he expected me to be in a wheelchair and was surprised that I was still only using a cane. (and a wall as necessary) Needless to say, he did not want me to take the abx. "You are taking your life in your hands!" DUH.

Rica.

[Katman]

Hey KK2

How about the Frankenstance?

Rica