This Is MS Multiple Sclerosis Community: Knowledge & Support

I CAN'T BELIEVE YOU ARE ON 5 - THAT IS GREAT LORI!
WE ARE GOING THROUGH SOCCER TRY-OUTS RIGHT NOW AND A LITTLE STRESSFUL.

Lori, You're doing great! I'm really happy for you.

_________________
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

Wiggy
We just went through soccer try outs-you are right, they are stressful and they shouldn't be. I pm'd you.

Mac
Thanks for your encouragement. As you know, flagyl time is not the easiest!

Lori

I had my 6 month follow up appointment at Vanderbilt on June 23. We have been traveling ever since so my internet access has been sporadic. I tried to send this once and after typing it all in the connection failed. So I am going to try again!



The appointment went really well. I really like seeing this doctor because he give me tons of time. This appointment was about 1 1/2 hours again. We talked again about his trial and how this is working for some and not for others. I told him I feel as though I have had significant improvements in cognitive (don't seem to have the "brain fog" any more), agility, fatigue and general feeling of improvement. I am not saying all of these symptoms are all better but there is good improvement. I told him I felt that we should continue for another 6 months (because that's what I knew he would agree to) and he agreed. I will see him sometime next January. In the meantime the following is what he is changing for me:

-the big thing is to increase flagyli from 7 days per month to 10 days (won't that be fun?!) If I have problems with that I am to let him know.

-increase calcium pyruvate to 2.5 grams MWF

-increase vitamin Di to 50,000 IU per week (He is preparing to start a study on increased vitamin D in coordination with the Accelerated Cure Project-I am not part of that study though)

-he wants me to have a new MRI including spine before I go back in January so he can see what is happening/has happened .



That is all for now. I will start this all when we get back home next week. Don't want to change anything while we are away from home.

Lori

Enjoy your travels, Lori. You deserve it! Don't worry about ten days of flagyl; I'm at about six weeks now and it's going fine. You'll get there, too, someday soon.

_________________
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

I just completed my 6th flagyli pulse yesterday. It was supposed to be for 10 days but I struggled to get through 7 days. I keep having recurrent UTIs and am on an additional antibiotic for that so the combination was a lot to take. I suffered from body aches and nausea this time as well as another terrific headache yesterday. Plus, I just don't feel well overall starting about the 3rd day of flagyl. I feel toxic! I will make sure I take anti-porphyriai measures regularly next time to keep the bad feelings at bay.

Interestingly, today (with no flagyl) I feel good. So I know it is the flagyl, and maybe the combo, that does this to me.

Next month I will keep up the Emergen C, glucose and charcoal on a regular basis. (Maybe by then we will be able to get to the bottom of the UTIs).



Lori

Lori,
WoW! Six! Kim really wants to try 10 too, but was told to stick with 7. Being Flagyfied is definitely not fun. We switched probiotics to one that has several types in it and not just acidophilus. What does Emergen C do?

Did you notice any changes over your 5th pulse? Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken
Hasn't Kim completed 6 pulses also? Or have I lost track? I know flagyl doesn't seem to bother her as much as it does me.

The previous pulse wasn't easy either. But I suspect that this one was more difficult because a) the macrobid combination made it harder and b) I think as time goes on flagyl pulses can become more difficult. I am surmising that it is because it is killing more "bugs"!

Emergen C is recommended on the CPn Help website. It comes in a flavored packet that you put in water and drink. I'd have to research again as to what it does to help exactly, but I have found that it does. It is 1000 mg of vitamin C. It helps with energy.

Hope all is going well with you. I have an email into the Dr. S to ask about using tinidazole instead. I will post once I find out.
Lori

Lori,
Kim is on day 7 of pulse 7 right now today. She got somewhat Flagified the second half of the pulse after going strong the first 3 days. I'm totally facinated about vitamin C. I have an abreviated (lol) discussion of Vitamin C I wrote up a ways back at Vitamin C discussion. I first oulined why I thought it was bad and Kim stopped taking it and then ........

Does the Emergen relate solely to energy? Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

I finished my 7th pulse today but it is now changed from flagyli 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!

The reason I had to change is that I was experiencing recurring UTIs without knowing why. I had to take an additional antibiotic for the UTI, along with the ones I take for CAPi. When it came time for flagyl I think the additional antibiotic ( usually macrobid) along with the flagyl put me over the edge. So the doctor wanted me to 1)change to Tindamax and 2)see a urologist for the bladder issues. So I did and for the past month have been undergoing several tests (3) to see what the issue was. Well it does appear to be neurological, so I now have gotten to add Flomax to the pile of pills I already take. But it does seem to be helping. Haven't had a UTI for a couple of weeks.

So it has been a challenging month, to say the least, but at least the Tindamax pulse wasn't bad. And I do have to say that I feel that over the past 8 months there has been improvement. Fatigue is pretty much gone (not that I don't get tired-it's just not overwhelming), double vision is much improved. Only experience it when I am really tired or really hot. Still have slight tremor. Balance is very good. My sister was here this past weekend visiting from out of town and she commented on how well I looked and acted. I feel glimpses of my "old self" coming back. Don't misunderstand, I am not "all better" yet so those of you who think this is a quick fix-it most definitely is not. But it is definitely strong improvement and encouragement to continue on! I wouldn't stop for anything!

Lori

Lori,

I assume you're not being impacted by the storms. I've always had the feeling that living in Florida was something like putting a chip on a roulette mat.

Oh, Flagyl, oh Flagyl, so sad thee parted ways.

I don't know much about Tini, but it sounds like it's working for you. It's great to hear that you feel better. I suppose that's what matters. So you've been given the ok to run up to 10 days if you want? That sounds sorta adventurous. Like Deal or No Deal ....... I wanna keep going!

Congrats on another pulse done!!! HooRay!!!

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken
We had no problem with Tropical Storm Fay. Now keeping an eye on the next one, "Gustav". You know, I am okay with hurricanes. They are so much more predictable than tornadoes! And you are given so much warning with a hurricane as compared to a tornado. The Weather Channel reports them to death!

I don't know for sure that I will be increasing Tindamax to 10 days any time soon. It is just an option. I do know that the next time will still be 7 days. I am not THAT adventurous yet! I'm just grateful to get through one month at a time, and really happy that this time was not a problem. But I always expect the unexpected when doing this protocol. I have learned that what happens one month may not happen the next month!

Hope Kim is doing well. I think of her often!

Lori

Lori, I think of you when I do these insane 30-day pulses. You remind me of me when I started abx nearly three years ago. First, the tentative dance around taking that very first flagyl tablet. Then the 'damn the torpedoes, full speed ahead' downing of all five days of flagyl the very first time I pulsed. Then, the ridiculous dive into month-long pulses, which you, too, will do at some point. I'm sure of it.

We are made of stronger stuff than most, I think. That's why we're here. And that's why we'll be around for many, many years to come, instead of letting this infection waste our lives and minds.

_________________
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

MacK
As you well know, I researched this subject to death, then decided to hold my nose and jump in! Am soooo glad I did!

I can see myself doing long pulses sometime in the future-not yet but someday!

I just was with a friend this morning who I haven't seen in about a month. She said "you look so good!" She knows everything I am doing and what I have been through. So I take that as one more validation that I definitely did the right thing by plunging ahead. Re-affirmation is such a mood booster!

Loei

I finished my 8th pulse on Sunday. The week was pretty uneventful. I definitely have less difficulty with Tindamax versus flagyli. I don't experience any nausea from it as I did with flagyl. On day #3 of 7 I experienced extra tiredness. Really wasn't motivated to do much that day. So I took it easy, took glucose and Emergen C and was feeling better after that. But I also got a B12 injection the next day and I believe that is what helps with being tired the most, at least for me. I wake up every day with stiffness and aches, which go away for the most part after I get moving around. Interestingly, the tremor in my right hand is present every day, some days worse than others. It had gone away last year. But when I look back it was probably my first symptom of MSi, back when I was in high school. I remember reading here some time ago that people revisit old symptoms, sometimes in reverse of how they first experienced them. If this is so for me, it makes me excited as I have had this for a very long time.



When I look back at my notes for this pulse, I had a headache for the entire day on Day 5 . This included facial pain and sinus congestion, and sinus pain. But it was gone the next day.



Each day things kind of come and go, but I KNOW I am better than I was and I also know that had I not done CAPi I would not be doing as well. So I just keep plugging along!



Lori