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I finished my 14th pulse on Saturday. This pulse was two weeks overdue, so not surprisingly, I noticed that effects were a little more intense. The second day I awoke with major body aches. It took most of the day for them to go away. I had body aches again on the 5th morning but they didn't last as long. The biggest thing is that I awoke every morning very tired and just didn't feel great all day. Also I had some difficulty sleeping for several of the days. None of this surprised me since I was late in getting to this pulse (had company). But I also did not have any headaches like I have in the past. Every thing else is going along well. No changes since last post.
I saw my local neurologist this past week, only because she said I had to as she hadn't seen me in more than 6 months and since she prescribes Copaxone I had to oblige. There was not a lot to tell her as far as how I am doing. She thinks I am doing well (although she will not give any credit to it being from the antibiotic therapy). She refuses to believe in it. But that doesn't bother me as I accept that I am never going to convince her any differently. It is just beneficial to me to have a local neuro . But I know differently-I credit my improvements to the antibiotic therapy. I will continue on....
My 15th pulse was May 2-9. This pulse was relatively uneventful. Aside from being a little more tired the last 4 days of the pulse and my feet hurting again at the end, there isn't much to tell. Generally didn't feel as well as I do on non-pulse weeks. But overall, nothing outstanding to note. I will keep this same protocol up for another couple of months then will check with the doctor to see if I should make any adjustments (different abxi, different dosages etc).
I finished the 16th pulse last week. Again, relatively uneventful pulse. A return of slight dizziness on the last part of the pulse but it was not nearly as severe as it has been in the past. A little more tired the last two days of the pulse but again not severe.
Interestingly I awoke today with a headache and slight facial pain. However, it is really hot and humid here now so it could be just that.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Thu Jun 18, 2009 9:58 am Post subject:
Hi Lori,
It's good to hear that the pulse is going well. It kinda makes you wonder if there's a corner coming up that you gotta turn on, don't it? Sometimes I feel like it's a giant game of theraputic guessing. Have you found any new superpowers?
We leave for Nashville in 2 weeks. Did you know that the new office is in a shopping center? No more pre-visit pancakes. Should be easy parking! Are you still taking 3gm's of pyruvate? I've found that others are taking 6 on Stratton's advice. Kim is still at 3 but we'll ask about this when we are down there.
Ken
I go to Nashville in August. Can't wait to hear about your visit.
I stopped taking the pyruvate as it wasn't agreeing with me and the pills are huge. I should definitely start taking them again and see what reaction I get. Thanks for the reminder. I hadn't thought about that.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Thu Jun 18, 2009 11:41 am Post subject:
Eighteen months? Goodness, how time flies!
With regards the headaches and facial pain, I have been getting the same even up here in wet and windy Beds. It is humid and thundery though, the only time I ever get headaches.so I guess you are correct in your surmises.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Thu Jun 18, 2009 12:48 pm Post subject:
Lori,
The pyruvate thing is more clear now, to me. There's stuff about it at CPn Help. But in a nutshell it's all about getting at the cryptic state cpn. Normally that's what flagyl is for, but pyruvate is supposed to help get the cryptic cpn's more exposed so you can kill them more often. This is also somewhat realted to the various discussions of iron over there.
Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
I finished the 17th pulse with Tindmax yesterday. As like the last time, it was not too difficult. Some dizziness, a little extra tiredness and a couple of days of body aches. Everything else pretty much remains as it has been. I go to Vanderbilt for another follow up appointment next month. Am looking forward to that!
I just played 9 holes of golf this afternoon. I haven't played in more than 7 years, since I was diagnosed with MSi. I used to play at least twice a week prior to that. Today wasn't pretty, but I actually played and even had some holes that weren't too bad! I am tired but am pleased that I was able to do it! I know that I would not have been able to play a year ago. It is so nice to see some signs of normalcy returning!
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Mon Jul 13, 2009 2:52 am Post subject:
Wow Lori, that is really good news! You must tell Sriram when you see him; it'll make his day.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Mon Jul 20, 2009 2:33 pm Post subject:
Lori the golfer!
Hey that's really exciting. So what was your memorable shot? Do tell. It's always cool to hear a good golf story. Have you been to the range, or did you just run out and play?
Ken
There was no memorable shot! It is just the fact that I actually got the golf ball into the air, relatively straight, instead of just rolling over the grass a couple of feet! No records set by me-just getting to play was enough for me. It was kind of like old times as I played with my mom. We used to play a lot together-she still does and I envy her!
Really looking forward to seeing the new digs at Vanderbilt!
This week was my 19th pulse. I did not report the 18th pulse as it was relatively uneventful, as is this one. I usually have one day that I wake up with some body aches (which are gone by mid-adfternoon). I also have one day with upset stomach-again not severe, just noticeable. Then I have a day with a headache. These side effects don't happen on the same day and are not really too bad, all in all. I always feel a little more tired during the week I take Tindamax. These pulses are definitely getting easier each time I do them. (I hope I didn't just jinx myself!)
I asked Dr. S. if we should make any changes in the protocol (different antibiotics, different length of time etc) He wants me to continue just as I have been until I go to see him in February. That will be my 2 year anniversary from starting abxi protocol.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Sun Sep 13, 2009 3:43 pm Post subject:
Hi Lori!
Sounds like everything is going well. I suppose it means we've come a long way when we aren't listing out all the little things that happened.
I just had my second year appointment at Vanderbilt yesterday. It is unbelievable to me that I have been at this for two whole years! In some ways it seems like I have been doing this protocol longer because it is just part of my daily routine. On the other hand, it seems like I was just there for my initial appointment a few months ago!
The new location truly is the "Vandermall" as Kim calls it. They took a large part of a mall and retrofitted it into not only the MS clinic, but other specialties as well. It is an incredible place and unlike all other clinics that I have been to, I found it patient-friendly and relaxing.
Now to the MS part: I had an MRI done this past January of both brain and spine. The comparison was an MRI that I had done exactly one year ago and again of brain and spine. The only difference is that the MRI machine this year is a more powerful machine (in other words-better). Dr. S spent a long time comparing the two, going back and forth. The result is that there is no progression found at all. This is great news to me, although it is as I expected. Symptomatically I feel that I have improved since last year. And when Dr. S. compared his notes from last year to how I presented this year he concluded the same. I no longer experience dizzyness, my vision is good (no double vision), slight nystagmus, walking speed is good.
Dr. S said that I need to come back in a year, rather than 6 months as has been in the past. He wants me to continue the protocol for another year and then at that time we will consider going on intermittent. The only change is that I increase the Tindamax dosage from 250 mg to 500 mg and increase from 7days out of a month to 10 days out of a month. All other treatment to remain the same.
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