This Is MS Multiple Sclerosis Knowledge & Support Community

Lori,
It sounds like you've found the solution to Flagyl. Congrats! It seems like a long time ago that you were not sure if you were going to try ABX. It's exciting to feel new stuff happening, but I also (you'll see in my next update) understand that it's going to have down times too.

With Tini, do you need to take charcoal? Here's to plugging along! Ken

Ken
I didn't need the charcoal this time with the tini. Although didn't have to use much of it with flagyl either. I know that each one of us is different. Looking forward to your post.
Lori

Lori, That sounds great!

Lori, you said on the last page:

"I finished my 7th pulse today but it is now changed from flagyl to Tindamax. What a difference this pulse was! I had very little reaction to Tindamax compared to how I felt after the past flagyl pulse. I had one day (4th out of 7) where I was more tired than usual. But not wiped out like flagyl does to me. Also no nausea like I experience before. And it doesn't taste yucky! If I tolerate this well the doctor wants me to go for 10 days, which I would do after the next pulse or two if things go well. The only thing that worries me is if Tindamax is actually doing anything. At least with flagyl I believed the "feel worse before you feel better" mantra applied. What would be awesome is if Tindamax works just as well without the side effects of flagyl!"

People do worry because it doesn't make you feel as yucky as metronidazole, but it worked fine for me. One thing, though, I swapped part way through one pulse and felt nothing at all for the remainder of that pulse. Next time it was better than metro but not quite so good, the next time the difference was even less. The lack of taste was worth the change, though.

Apart from that, aren't you doing well!

I can't believe I am now finished with 9 pulses! Antibiotics are just a part of my daily life now that it is just routine. With this past pulse I experienced very little. The third day I was a little more tired than other days but not so much that it was difficult. Other than that it was uneventful. Part of me is glad for that but part of me keeps hoping that the antibiotics are doing their job and that I am not at a standstill! When I think of it intellectually I know that is not true and I am grateful that my side effects are so much less than they were when I started this.

I just continue to plug away at this!

Lori

Nine pulses, Lori? Goodness, how time flies! If you ever worry about whether abx are doing their job, I experienced very little after six months and many fewer pulses than you and now, five years on and one year without antibiotics, I am still experiencing improvements.

Sarah

Sarah
That is so good to know! As I said, logically I understand that and am truly grateful that this has not been rough. But I have wondered on occasion! It helps to know that it doesn't always have to be tough on me to still be working!
Lori

My how time flies when you're having fun!

It's sorta amazing to think that it was about a year ago you were thinking about doing ABX and folks were posting about how you'd be crazy not to.

Sarah, it's motivating to hear that you are still experiencing improvement. Very motivating.

Lori, I'm wondering how you may be noticing overall benefit from ABX.

Ken

Ken
The best way I can answer your question is that my husband says often "you are like your old self"! And to me that is the best news! I will go back over my journal to look at old entries to see what specific symptoms have improved and get back to you. Just so everyone understands, not all is perfect at this point, nor do I expect it to be. But things are much better for me and am so glad I proceeded with this protocol.

Have to run but will type out specific improvements as soon as I can.

Lori

Lori, I have moments of questioning whether it's working, too. Whenever I have a twinge of some old symptom.

But, realistically, there's no doubt at all. I'm so much better, there isn't space to list all my improvements here. I, too, am glad you decided to do abx!

I finished my 10th pulse with Tindamax yesterday. It was a 7 day pulse. I would say that this pulse was not quite as easy as the previous. Every month is different. This time I don't wonder if Tindamax is really doing anything for me. With my reaction I know it is. I still didn't feel as badly as I did with Flagyli but definitely knew I was doing a pulse this time. As always, I do fine the first couple of days. But by the 4th day I feel like it is hitting something. On 4th day I had a headache all day (not as severe as in the past but still there). On the 5th day I was so tired all I wanted to do was lay around-fortunately is was Saturday with lots of college football to watch! By taking it easy on Saturday I felt much better on Sunday and was able to go to a wedding with no trouble at all.



Last month Ken asked me exactly what changes I have seen over the past several months. I reviewed my journal and this is what I came up with:



-My balance/walking is very good. Prior to starting antibioticsi it was good but I did stumble some.

-Dizziness is mostly gone. Up until about a month ago it was a problem and I found that glucose tablets helped with it. I haven't needed them in quite a while. (although they help with die-off too)

-Not much in the way of tingling of my left hand and foot. If I pay attention I can tell it is still there a little. But if i don't think about it I don't notice it at all. I imagine this little bit left is from permanent damage-just my guess.

-Double vision occurs only at night when laying down and watching television. I don't remember the last time I used my prism glasses.

-I have been having trouble with my feet hurting for the past year and a half. They don't hurt nearly as much as they did. I was even able to wear heels a little while last week. (Guys probably don't care about this but the girls will know what a big deal this is!)

-I still sneeze a lot, not only when I do NAC but at other times too. This says that the antibiotics still have an effect.

-Most important observation to me is that of my husband. He continues to comment on how much better I seem. He told me that I look healthy. My daughter's friend's mother commented to my daughter how healthy I am looking. These comments mean so much to me as it validates what I have been feeling and observing in myself.

-It is such a domino effect-I have been working out regularly because I have felt well enough to do it. Then by working out I feel better. So it goes around and around.

I am not done with this by any stretch of the imagination. I know and feel that I still have MSi. I don't want anyone to think that in a year you can be all better! I am in it for the long haul. I go back to Vanderbilt in February and will have an MRI (brain and spine) before I go. I am so looking forward to seeing what the MRI finds. But at this point I am so glad I started this journey last January. Thanks to all of you who encouraged me to proceed!

Lori

Any time, Lori. Soon it wil be your turn to bring on the next wave of pioneers!

Watch out Lori, I can see them massing on the horizon at this very moment!!

Sarah

Coming up on a year, WOW!

Our trial with Aleve makes me wonder if the lack of flagylitis you experience with Tindamax results from it's not causing some sort of inflammatory cascade. Aleve also helps Kim on Azith days.

Balance - improved
Dizziness - improved
Left hand/foot - improved
Double Vision - improved
Foot Pain - improved
Spousal Opinion - improved

Lori, you have a fabulous list! Kim's also got similar improvements. It's great to sense the positiveness in your spirit.

Mac, What wave?

Sarah, What do you know that I've missed?

Ken

Ken, wouldn't you like to know!