Are We There Yet?
It takes us about 4-5 hours to drive to Mom’s house. The boys wait until we’ve been in the car for about …… oh, an hour; then it starts – “Are we there yet?”. “Daddio, how much longer?”. “Daddiyyoooooooo, I’m bored”. If you have kids, this may sound familiar.
So now Kim’s beginning the patience test. She wants to know when she can stop using Copaxone. She wants to know when her hand will start working. She wants to know when the aches and pains will stop. She wants to know when she’ll walk better. She’s having some emotional swings, mostly taking the form of frustration with stuff that doesn’t workout to her expectations. I tell Kim we’re only just getting started, which sounds nice, but I know it’s how she’s feeling that matters. I’m listening patiently; I’m always just a hug away.
What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different. It seems to me that both are grounded in inflammation brought about by one thing attacking another thing in the CNS. Along this line of reasoning, I think this is a problem for folks in the “learning” stage. It’s quite easy to learn about Copaxone, Avonex, Rebif, Betaseron and Novantrone. It’s a pain in the ass learning about ABX from scratch. But the rub is that if you really don’t prepare yourself for ABX, emotionally AND intellectually – you are more likely to become dissatisfied with the therapy.
I believe, emotional and intellectual preparation for ABX treatment is critical to its success.
Emotionally, you need to be ready for symptoms that not only make you feel worse and less healthy, but they can also scare you in their similarity to exacerbation symptoms. Kim’s done Novantrone and I think that ABX is easier. But, if the die-off side effects of ABX was the worst Kim had ever felt, I think it could open the possibility of second guessing. Also, the protocol heightens one’s emotions, which can intensify emotional experiences while on Flagyl. Kim’s more prone to tears, frustration and anger. At times she feels the burden and I realize; although I can talk the talk, Kim has to walk the walk. You need to have faith in what you’re doing in order to do this. You have to have resolved in your mind that this is the one-way ticket to health and you’re going to have to run the length of the railroad trestle nonstop else you get hit by a train. You must be relentlessly committed.
Intellectually, you need to know how it works and you need to have confidence in your knowledge that you are prepared. You know that there will be tough times. But, you’re ready for them, you’ve planned in your mind that these things will happen. You know to expect down times, painful times, you know
and therefore there will be no surprises – You’ve learned about the train, the trestle, the footing and your own ability to walk, run or crawl the distance. You can’t leave room in your preparation for chance or “winging it”. You need to know what supplements you’re going to take and why. You need to have a plan for what you’re doing that includes not planning a family vacation during Flagyl week.
So along these lines, learn about the side effects so you know them from an exacerbation. Know what to expect and more importantly, know enough so that you don’t second guess yourself.
The Female Advantage
Kim and I have a little debate of sorts. While neither of us easily embarrass, Kim senses that folks are sensitive about certain things and I don’t necessarily think it matters. I mean, how can you leave off the list of MS symptoms something that’s important? I think knowledge trumps modesty. Kim has deliberately excluded stuff from her posts and we’ve gone back and forth about it. So if you blush easily, don’t read anymore.
You’re still reading aren’t you? You can tell Kim that you think it’s great that we can have an honest chronicle of her healing. I have no idea how this will work, but nothing happens until we try. I want to have some sort of checklist to reflect how Kim is doing. I hope to improve this as we go.
There was a high in the first week of protocol on Rifampin when Kim was walking …….. like completely normal. This lasted until she started Azithromycin which brought her back to needing a cane. During Flagyl week Kim has been less balanced. Kim has found that if she swings her arms, she can walk more deliberately. We keep a cane in the car; just in case we need it.
In the months leading up to starting ABX Kim was buying more and more pee pads. She had more frequent “incidents” and pee pads became a staple item to have with us. Bladder control is greatly improved now which for the most part is maintained. We still have them with us incase we are going to be out for several hours, but Kim’s had way fewer accidents and the trend is promising. I’d also add that Kim seems to need to be more careful when on Flagyl.
We have real data on this. I keep a chart of each shot, where Kim got poked, how it felt and how much sting there was. In the months leading up to ABX, Kim lost all sensation of the sting. Prior to that she had sting ratings mostly in the 2-5 range on a completely subjective scale of 0 (no sting) to 10 (torture). Kim did not get sting back until her first week on ABX, taking Rifampin. Then the addition of Azithromycin caused the sting to go away again and then after the first Flagyl pulse it came back. The stinging now is only in the one-half to 1 range, but Kim is feeling it about 2/3’s of the time. Note: For now we have discontinued using the Sting Reduction Technique
so we can track Kim's progress.
It was very frustrating for Kim to lose them which coincided with the lost of Copaxone sting. I should note that we do all Kim’s Copaxone shots in her derriere and the loss and return of orgasms has followed the pattern of the Copaxone sting. The only key difference seems to be that orgasms are either working or not working. The intensity of them does not seem to be impaired when Kim has them. We are not subjectivbely measuring and tracking this.
Kim felt cold all the time before she started ABX. She’d need jackets or sweaters and gloves and a hat. The ABX seems to have helped Kim to feel warmer most of the time. She does start to feel cold when she’s taking Flagyl. We’ll see if she feels warmer in her post-Flagyl week.
Kim’s left hand has not been as strong as her right hand and especially when she is in the Flagyl pulse, her hand becomes nearly useless. Similarly Kim’s gait has always been on the left side. During the Flagyl pulse, Kim has less control over her left leg.
At Sarah’s suggestion we have been videotaping a weekly 25ft. walk. The first walk was two days following the completion of Kim’s first Flagyl pulse. Kim complained that I was being mean to her because I wouldn’t let her hold onto countertops and stuff. She used two trekking poles and she walked the 25 feet in about 60 seconds. This was slow and definitely related to the Flagyl. Unfortunately we did not do timed walks before this; with the exception of the one at Dr. Sriram’s in December which I believe was about 25-30 seconds. Though I knew at that time that Kim could walk better; I think she was anxious about finally making it to the appointment.
Kim’s second weekly walk was vastly better, no sticks! She walked 25 feet in 11 seconds. In the third week she cleared the distance in 10 seconds. In the fourth week Kim walked 25 feet in 9 seconds. The fourth week walk was on day 3 of her second Flagyl pulse. I’d say that Kim’s a little wobbly in these walks. She swings her arms to help her with her balance. I think she’s slightly improved since starting ABX. Her most recent, fifth walk was two days following the completion of her second Flagyl pulse. She walked the 25 feet in 17 seconds, unaided. When compared to the same time a month ago, Kim has clearly improved. Isn’t this exciting!