Posted: Mon Feb 02, 2009 8:25 am
Pulse 12
I was home New Year’s Day, whereas I’m not normally home when Kim starts her pulse. It wasn’t such a bad day. We all went to PetSmart to get Lucy new dog toys, Kim cooked dinner and we started to undecorate from Christmas. We also went to Mass. I guess I’m saying we did a lot and while Kim seemed to be slowed somewhat the second half of the day, she seemed otherwise fine. Day 2 was pretty much the same as Day 1. On Day 3 we went to Costco and Kim did the entire warehouse with a shopping cart. She’s done this before, but this was a different Costco for us to visit. It was way larger and very crowded. Kim handled the whole trip really well, including walking to the non-handicap space I parked in at the end of the trip. Day 4 was a good day too. I think the Ibuprofen is helping keep the die-off inflammation down. We went to Sears and Kim tried an eliptical. She didn’t like it. She thought a treadmill would be better. Days 5 and 6 were uneventful. Kim was a little more tired than normal at the end of the day, but that was about it. I seriously think the Ibuprofen/COX-2 inhibitor is helping negate the inflammatory effects of the Flagyl. Day 7 was catch up day; Kim got way more tired.
Then on day 1 of post-pulse Kim was cold and shivery and more tired and had poopers. She did not take Ibuprofen beyond day 7 and in hindsight I didn’t think die-off would be an issue once she stopped taking the Flagyl. Wrong! So on day 2 post-pulse I suggested that Kim take some Ibuprofen. She was feeling very tired and her voice was cracky and she sounded like she might have several pulses ago. I imagine that the die off is still there and she needs to keep taking it until the die-off subsides. Over the post-pulse week Kim’s been feeling a little better, but still seems to be experiencing die-off.
25-Foot Walk Update
Walk Date ______ Seconds
02/17/08 ________ 10.53
02/25/08 _________ 9.63
03/03/08 ________ 10.91
03/09/08 ________ 16.75
03/16/08 _________ 9.46
03/22/08 _________ 8.59
03/30/08 _________ 8.06
04/06/08 _________ 9.34
04/11/08 _________ 7.81
04/20/08 ________ 10.81
04/27/08 ________ 12.28
05/04/08 _________ 8.97
05/11/08 _________ 7.81
05/19/08 _________ 6.60
05/31/08 _________ 6.50
06/08/08 _________ 5.78
06/15/08 _________ 6.03
06/22/08 _________ 6.16
06/30/08 _________ 6.06
07/13/08 _________ 7.72
07/19/08 _________ 5.19
07/26/08 _________ 5.53
08/03/08 _________ 4.72
08/10/08 _________ 5.35
08/17/08 _________ 5.50
08/24/08 _________ 4.91
08/31/08 _________ 4.84
09/07/08 _________ 4.62
09/14/08 _________ 5.06
09/28/08 _________ 4.78
10/07/08 _________ 6.03
10/12/08 _________ 4.88
10/22/08 _________ 5.13
10/26/08 _________ 5.10
11/02/08 _________ 5.16
11/09/08 _________ 5.08
11/16/08 _________ 5.25
11/23/08 _________ 5.40
12/07/08 _________ 5.03
12/22/08 _________ 5.09
12/29/08 _________ 4.97
01/04/09 _________ 4.50
01/11/09 _________ 5.00
01/19/09 _________ 5.53
You can tell from the last 3 times that post pulse week (11th) was harder than pulse week and then 2-days before Kim’s appointment we got mystery illness. We’re not sure what it was; food poisoning, extreme anxiety, flu ?????? It clearly affected Kim and the walk time is really much better than she felt. Her stomach still hurt, even after our return home.
Appointment In Vanderbilt #3
Our plan was to leave for Nashville in the late morning and arrive in time for bedtime. Kim was sick the night before, and we went to an urgent care center rather than leaving. She had something like the flu, but we don’t know for sure. She didn’t want to eat or drink, but she was insistent on making the trip and not cancelling her appointment. She got a shot of Phenergan and we left very late and Kim slept nearly the whole trip.
Kim’s MRI was scheduled in the morning and she was expecting an open MRI and she got a closed one. She knew the gadolinium was coming, but she really does not like the closed MRI. Maybe it helped that she felt like a wet noodle to begin with. The medical center in Nashville has the MRI on a network and Dr. Sriram had it before we got to Kim’s appointment an hour later. Kim did not walk well, but still walked in 5.53 seconds. This was pretty good when you consider that a year ago she did the walk in 20.24 seconds and she was doing this on about a quarter of a waffle that she was able to keep down that morning. For the record, Kim was not having an exaserbation last year, the 20.24 second walk was on par with how she felt at the time.
We could not get the 2005 MRI disc to work in the computer that was in the exam room. But, we had the hardcopy films so the doctors kept going back and forth between the exam room computer that had the new MRI and the light boards in the hallway. A team of 3 neurologists looked at the MRI’s and opined that there was no new activity and the gadolinium did not show any active sites. We were very happy, albeit hoping for more.
Kim will stay on her current protocol without any changes. In Kim’s last appointment she was found to have very high levels of chlamydial antibodies and blood was taken to measure this again. Dr. Sriram also took a sample to test her vitamin D levels.
Kim has a much more descriptive version of the experience at her blog – Happy 1st AZITHROVERSARY to me!
How Deep Does Kim Smile?
I can’t help but wonder ………. Kim’s 2005 MRI and 2009 MRI are just points in time. They are apparently level with each other, but does that mean that her disability was constant/flat or could it be that the more appropriate connection between the points would be a down then up/curve like a smile? I speculate on this because the 2005 MRI was before the time Kim started Novantrone. We were told that she had changed from RRMS to SPMS. Kim started on ABX only a year ago, January 2008 and has anecdotal improvement. Is the proper line between 2005 and 2009’s MRI’s a straight line or a curved one? I think it’s curved from a down swing in 2005 to an upswing in 2009. Supporting evidence?
When we made the first appointment at Vanderbilt we needed to get a copy of Kim’s neurology records for Dr. Sriram’s office. The records were sent to us and I made a copy. Here is a bit of chronology:
03/2001: RRMS, Ataxic wide based gait, uses cane, cannot perform Romberg Test, Avonex, Provigil.
02/2005: Condition changed to SPMS, Requires cane to walk more than a few steps, first report of bladder dysfunction, Avonex, Provigil
10/2005: MRI
04/2006: Spastic wide based gait, ambulation difficulty, letter of medical necessity for motorized scooter, Initiate Copaxone, Provigil, Discontinues Avonex.
09/2006: Novantrone Infusion 1
10/2006: Improved to normal gait some spasticity, Copaxone, Novantrone, Provigil
12/2006: Novantrone Infusion 2
03/2007: Novantrone Infusion 3
04/2007: Increasingly difficult wide based spastic gait, Copaxone, Novantrone, Provigil
05/2007: Worsened wide based spastic gait, Initiate IVIG, Copaxone, Novantrone, Provigil
06/2007: Novantrone Infusion 4
07/2007: Improved wide based spastic gait, Copaxone, Novantrone, Provigil
09/2007: Novantrone Infusion 5, discontinued chemotherapy due to failure of continued effect. First report of sexual dysfunction.
01/2008: 25-foot walk time 20 seconds. Improved sexual function. Initiated Combined Antibiotic Protocol, Copaxone, Provigil
05/2008: 25-foot walk time 8 seconds. Kim uses the cane a lot less. Noted improved bladder function and body heat. Combined ABX Protocol, Copaxone, Provigil
06/2008: 25-foot walk time 6 seconds. Combined ABX Protocol, Provigil, Discontinues Copaxone
10/2008: 25-foot walk time 5 seconds. Initiated Aqua Aerobics class. Combined Antibiotic Protocol, Provigil.
01/2009: MRI. Completed first year of Combined Antibiotic Protocol.
As I look at it, it’s not a perfect “U” shaped curve, but more like a “W”. Kim was clearly sliding before the 2005 MRI and her dx was shifted to SPMS before that too. Kim slid further until being put on combined Copaxone/Novantrone therapies. She had improvements, then worsened following an exacerbation. Under Combined Antibiotic Protocol Kim has improved.
Here we Go Steelers, Here we GO! Ken
I was home New Year’s Day, whereas I’m not normally home when Kim starts her pulse. It wasn’t such a bad day. We all went to PetSmart to get Lucy new dog toys, Kim cooked dinner and we started to undecorate from Christmas. We also went to Mass. I guess I’m saying we did a lot and while Kim seemed to be slowed somewhat the second half of the day, she seemed otherwise fine. Day 2 was pretty much the same as Day 1. On Day 3 we went to Costco and Kim did the entire warehouse with a shopping cart. She’s done this before, but this was a different Costco for us to visit. It was way larger and very crowded. Kim handled the whole trip really well, including walking to the non-handicap space I parked in at the end of the trip. Day 4 was a good day too. I think the Ibuprofen is helping keep the die-off inflammation down. We went to Sears and Kim tried an eliptical. She didn’t like it. She thought a treadmill would be better. Days 5 and 6 were uneventful. Kim was a little more tired than normal at the end of the day, but that was about it. I seriously think the Ibuprofen/COX-2 inhibitor is helping negate the inflammatory effects of the Flagyl. Day 7 was catch up day; Kim got way more tired.
Then on day 1 of post-pulse Kim was cold and shivery and more tired and had poopers. She did not take Ibuprofen beyond day 7 and in hindsight I didn’t think die-off would be an issue once she stopped taking the Flagyl. Wrong! So on day 2 post-pulse I suggested that Kim take some Ibuprofen. She was feeling very tired and her voice was cracky and she sounded like she might have several pulses ago. I imagine that the die off is still there and she needs to keep taking it until the die-off subsides. Over the post-pulse week Kim’s been feeling a little better, but still seems to be experiencing die-off.
25-Foot Walk Update
Walk Date ______ Seconds
02/17/08 ________ 10.53
02/25/08 _________ 9.63
03/03/08 ________ 10.91
03/09/08 ________ 16.75
03/16/08 _________ 9.46
03/22/08 _________ 8.59
03/30/08 _________ 8.06
04/06/08 _________ 9.34
04/11/08 _________ 7.81
04/20/08 ________ 10.81
04/27/08 ________ 12.28
05/04/08 _________ 8.97
05/11/08 _________ 7.81
05/19/08 _________ 6.60
05/31/08 _________ 6.50
06/08/08 _________ 5.78
06/15/08 _________ 6.03
06/22/08 _________ 6.16
06/30/08 _________ 6.06
07/13/08 _________ 7.72
07/19/08 _________ 5.19
07/26/08 _________ 5.53
08/03/08 _________ 4.72
08/10/08 _________ 5.35
08/17/08 _________ 5.50
08/24/08 _________ 4.91
08/31/08 _________ 4.84
09/07/08 _________ 4.62
09/14/08 _________ 5.06
09/28/08 _________ 4.78
10/07/08 _________ 6.03
10/12/08 _________ 4.88
10/22/08 _________ 5.13
10/26/08 _________ 5.10
11/02/08 _________ 5.16
11/09/08 _________ 5.08
11/16/08 _________ 5.25
11/23/08 _________ 5.40
12/07/08 _________ 5.03
12/22/08 _________ 5.09
12/29/08 _________ 4.97
01/04/09 _________ 4.50
01/11/09 _________ 5.00
01/19/09 _________ 5.53
You can tell from the last 3 times that post pulse week (11th) was harder than pulse week and then 2-days before Kim’s appointment we got mystery illness. We’re not sure what it was; food poisoning, extreme anxiety, flu ?????? It clearly affected Kim and the walk time is really much better than she felt. Her stomach still hurt, even after our return home.
Appointment In Vanderbilt #3
Our plan was to leave for Nashville in the late morning and arrive in time for bedtime. Kim was sick the night before, and we went to an urgent care center rather than leaving. She had something like the flu, but we don’t know for sure. She didn’t want to eat or drink, but she was insistent on making the trip and not cancelling her appointment. She got a shot of Phenergan and we left very late and Kim slept nearly the whole trip.
Kim’s MRI was scheduled in the morning and she was expecting an open MRI and she got a closed one. She knew the gadolinium was coming, but she really does not like the closed MRI. Maybe it helped that she felt like a wet noodle to begin with. The medical center in Nashville has the MRI on a network and Dr. Sriram had it before we got to Kim’s appointment an hour later. Kim did not walk well, but still walked in 5.53 seconds. This was pretty good when you consider that a year ago she did the walk in 20.24 seconds and she was doing this on about a quarter of a waffle that she was able to keep down that morning. For the record, Kim was not having an exaserbation last year, the 20.24 second walk was on par with how she felt at the time.
We could not get the 2005 MRI disc to work in the computer that was in the exam room. But, we had the hardcopy films so the doctors kept going back and forth between the exam room computer that had the new MRI and the light boards in the hallway. A team of 3 neurologists looked at the MRI’s and opined that there was no new activity and the gadolinium did not show any active sites. We were very happy, albeit hoping for more.
Kim will stay on her current protocol without any changes. In Kim’s last appointment she was found to have very high levels of chlamydial antibodies and blood was taken to measure this again. Dr. Sriram also took a sample to test her vitamin D levels.
Kim has a much more descriptive version of the experience at her blog – Happy 1st AZITHROVERSARY to me!
How Deep Does Kim Smile?
I can’t help but wonder ………. Kim’s 2005 MRI and 2009 MRI are just points in time. They are apparently level with each other, but does that mean that her disability was constant/flat or could it be that the more appropriate connection between the points would be a down then up/curve like a smile? I speculate on this because the 2005 MRI was before the time Kim started Novantrone. We were told that she had changed from RRMS to SPMS. Kim started on ABX only a year ago, January 2008 and has anecdotal improvement. Is the proper line between 2005 and 2009’s MRI’s a straight line or a curved one? I think it’s curved from a down swing in 2005 to an upswing in 2009. Supporting evidence?
When we made the first appointment at Vanderbilt we needed to get a copy of Kim’s neurology records for Dr. Sriram’s office. The records were sent to us and I made a copy. Here is a bit of chronology:
03/2001: RRMS, Ataxic wide based gait, uses cane, cannot perform Romberg Test, Avonex, Provigil.
02/2005: Condition changed to SPMS, Requires cane to walk more than a few steps, first report of bladder dysfunction, Avonex, Provigil
10/2005: MRI
04/2006: Spastic wide based gait, ambulation difficulty, letter of medical necessity for motorized scooter, Initiate Copaxone, Provigil, Discontinues Avonex.
09/2006: Novantrone Infusion 1
10/2006: Improved to normal gait some spasticity, Copaxone, Novantrone, Provigil
12/2006: Novantrone Infusion 2
03/2007: Novantrone Infusion 3
04/2007: Increasingly difficult wide based spastic gait, Copaxone, Novantrone, Provigil
05/2007: Worsened wide based spastic gait, Initiate IVIG, Copaxone, Novantrone, Provigil
06/2007: Novantrone Infusion 4
07/2007: Improved wide based spastic gait, Copaxone, Novantrone, Provigil
09/2007: Novantrone Infusion 5, discontinued chemotherapy due to failure of continued effect. First report of sexual dysfunction.
01/2008: 25-foot walk time 20 seconds. Improved sexual function. Initiated Combined Antibiotic Protocol, Copaxone, Provigil
05/2008: 25-foot walk time 8 seconds. Kim uses the cane a lot less. Noted improved bladder function and body heat. Combined ABX Protocol, Copaxone, Provigil
06/2008: 25-foot walk time 6 seconds. Combined ABX Protocol, Provigil, Discontinues Copaxone
10/2008: 25-foot walk time 5 seconds. Initiated Aqua Aerobics class. Combined Antibiotic Protocol, Provigil.
01/2009: MRI. Completed first year of Combined Antibiotic Protocol.
As I look at it, it’s not a perfect “U” shaped curve, but more like a “W”. Kim was clearly sliding before the 2005 MRI and her dx was shifted to SPMS before that too. Kim slid further until being put on combined Copaxone/Novantrone therapies. She had improvements, then worsened following an exacerbation. Under Combined Antibiotic Protocol Kim has improved.
Here we Go Steelers, Here we GO! Ken