Thanks Mac and Sarah for looking over the schedule. Kim’s got the charcoal in the bathroom and she takes it in the middle of the night when she wakes up. This seems to be workable since its several hours away from nighttime probiotics and morning antibiotics. I will be sure to ask Dr. Sriram about leprosy next time we are in Nashville. I’m actually more interested in his painting. I don’t know if I’ve mentioned this, but through my childhood and into my freshman year at college I studied art. I was, emphasis on was, an art major. There is a story that goes along with that. I just might tell sometime. There is something magical that happens when one artist meets another artist. It’s hard to explain, but non-artists don’t get it. Then again, I think I’m much better at fighting MS than I ever was at fighting with clean unspoiled white surfaces.
Kim had been on ABX for about 3 weeks when she had time to sit down and write a blog entry at CPn Help
. She saw immediate improvement beginning on the second day of Rifampin!
1) She could walk way better. She did not need her cane anymore. Kim even walked to a neighbor’s house and back.
2) She had bladder control. Became confident that she did not need to wear pads.
3) Her long standing acne concern was clearing away.
4) Her sensitivity to light (eyes) had improved so that she did not need to wear sunglasses so much.
5) Kim began feeling the stinging sensation of her Copaxone shots. (note: we stopped doing the massage about 3 months ago when it became clear that she was not feeling the sting. We continue to not massage so Kim can gauge how much the feeling in her bottom is returning)
6) Kim started having sneezes a few days ago. Don’t know if it’s a cold (likely) or an allergy (unlikely), but Kim’s not had sneezes within memory.
During the 2 weeks we planned a day trip to a nearby ski area (Massanutten) and worked with Mark at Therapeutic Adventures
on getting Kim an adaptive ski lesson. Kim was pumped!
Then Kim started Azithromycin in the third week and she slowly started losing many of her new found powers. By the time we came up on our ski day, she was concerned, but still determined. Kim had also lost a fair amount of use in her left hand. Mark was amazing and I highly recommend that if you want to try skiing, you contact Mark. He really knows his stuff and he’s been doing this for years. Mark got Kim on a slightly modified pair of skis and took her up the chair lift, immediately! While equipment modifications did help, I got video of Kim standing on the skis and sliding down the slope. This was so amazing. We had never enjoyed a day at a ski resort more. Two notes, first the lessons were not expensive, in fact it was less than the cost of my own rentals and lift ticket and second, Kim’s determined that next winter she’s going to make it down with less assistance.
By the end of the third week all of Kim’s new abilities had dissipated and she was actually walking worse then when she started. At the end of the fourth week, beginning of the fifth week Kim is to begin a 15, fifteen day Flagyl pulse.
On the other hand, yesterday, Kim felt better and she started her period. So, as the carousel spins, so to Kim’s ups and downs bring disappointment and elation.
We first tried to get Kim’s mail order pharmacy to fill the prescriptions. After faxing them (like we were told) we had to wait 3 days for them to be “received and processed”. Then we learned that we couldn’t fax them, but they had to come from the doctor’s office directly. Then we had to wait another 3 days and then they couldn’t find them. By then I had gotten frustrated and taken the Rifampin script to the grocery store and I got 60 capsules. Then the online pharmacy said they couldn’t fill any of the scripts because we had gone to the grocery store (throw arms up in air, rant and say not very nice things about health plan’s farmacy). Days and faxes later the new reason we couldn’t get them was that we had gotten married and Kim’s name was different in their system. Funny, since we have been getting prescriptions in Kim’s married name for over a year. Now we have an abundance of Rifampin.
Then, dare I say, we tried to get Azithromycin. The mail order farmacy said that they had it all figured out after Kim spent half a day on the phone with them coordinating her name, the scripts and duration of the refills. We only had to wait a few days and instead of getting a FedEx with three dozen Azithromycin’s, we got a letter saying that Azithromycin could not be filled for more than 4 pills at a time. MOO! Kim got back on the phone and called the mail order farmacy and Vanderbilt and I got fed up and went back to the grocery store which gave me 6 Azithromycin’s and an explanation that they would track the script internally to ensure that Kim got 12 refills of 6 pills. I also learned that primary and secondary insurance rules (Kim has 2 health plans) don’t apply to prescriptions. If you have 2 plans, give the pharmacist the card for the better plan. This is how we got 6 instead of 4 and a lower copay.
So today we’re up to Flagyl. The original script and instruction from Dr. Sriram was to take a 15 day pulse. We got 63 pills from the mail order farmacy which works out to be a 3-month 7-day pulse. I sent a fax to Vanderbilt this morning to try and sort this out because the pharmacist I called read the script they got from Vanderbilt as a 7-day course and not a 15-day one. More on this as the story unfolds.
For added bonus. Dr. Sriram gave Kim a script for Sodium Pyruvate.
Dr. Sriram wrote:Take 1.5 Grams 30 minutes before Azithromycin.
Kim is to start this after 8 weeks and NO pharmacy knows what the stuff is. Nor does the Vitamin Shoppe or GNC stores. Calcium Pyruvate yes, Sodium Pyruvate no. Kim called Vanderbilt and they said they would fill it and mail it to us.Questions
1) If you read my posts you know that Kim and I have this thing about USANA Proflavanol and how its absence in her supplementation seems to result in impaired walking. My discernment on Ascorbic Acid is here at TIMS
. Now I wonder, if the benefit of the Proflavanol is that it somehow suppresses the CPn. If so, then might it be a good idea to stop taking it to “bring the CPn out” where it can be ABX’ed?
2) Does everyone have the same complication we had getting a month or more supply of Azithromycin?
3) Daisy or anyone else, how does the course of a Flagyl pulse compare with a Novantrone infusion? What should we expect?
4) Can someone explain the biology of the die off and how this causes increased disability? My Own Mind
So I have this idea that floats in and out of my head. Two years ago Kim and I did the MS Walk with her scooter. It’s a fundraiser for the MS Society of the National Capital Area that’s held out near us in Reston, Virginia. The shortest route is 3 miles. After the first week of Rifampin I was certain Kim was going to just keep improving and that by April, three miles would be easy. But, I can still think about it for the 2009 walk. One idea I had would be our walking with some sort of custom tee shirt that might say something like, “I had MS”. I just can’t shake loose of this idea. Maybe we’d have something to handout to folks as we walked. We would of course do this when Kim can walk 3 miles. What a goal!
Then I have another thought. I happen to know that the MS society is about 3 blocks from my office. I had to go there to sort out a registration issue with the walk. I wonder about asking them is they’d rather wait until Kim is cured to work on a story or if they’d like to get to know her as she is in the process of being cured. I ponder and ponder. I’m obsessed, I’m positive and I’m grateful.Update
I got an e-mail back from Dr. Sriram today.
Dr. Sriram wrote:Flagyl 7 days on and 21 days off, if she tolerates her meds, we can then increase it to 15 days on and 15 days off. Sriram
So Kim will do 7 days of Flagyl in her first pulse and then we’re to report back to Dr. Sriram how it goes. I'm still working on the Sodium Pyruvate question.
Kim’s first Flagyl will be today. We think we’re ready. Ken