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Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Thu Aug 07, 2008 3:36 pm Post subject:
Priceless! What a babe! _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Thu Aug 07, 2008 4:09 pm Post subject:
Soccer looks like he's past getting trained. _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Feb 10, 2006 Posts: 358 Location: Northern Virginia
Posted: Thu Sep 04, 2008 11:06 am Post subject: "Bah" your Neurologist
Super Powers Update
Walking: Outside of the 25-foot walks, Kim’s regular walking seems to be about the same. I’ll have observations regarding pulse 7.
Peeing: No recent bladder control issues outside of pulse week. The Flagyl pulse seems to have impact here.
Orgasms: They have been slower to return following pulse 7. They started to return in the last week of the month and Kim was back to herself the last 3 or 4 days of August.
Body Heat: Kim’s had off and on chills this last month.
Left Hand/Leg: Kim’s had difficulty putting on earrings on some days.
Brain Fog: Kim seems to be doing well here. No real brain fog periods in the last month.
Neurologist Appointment
Kim was anxious the night before, morning of and drive over to her appointment. She was excited to walk for him and yet, she understood that there was no chance that he was going to say anything positive about her being on ABX. He was surprised to learn that Kim has discontinued Copaxone about 6 weeks before and he said something about Copaxone’s effect lasting a couple months after stopping. I’m not sure what the purpose of that comment was. I was expecting some sort of warning about going off a “proven” drug, but mostly he said that none of the approved drugs are pleasant. He seems totally unfamiliar with ABX and wanted to know what she was taking and he wrote it down and then disclaimed the entire idea that MS could be caused by a bacteria. But then he said that some studies could point towards MS having a tie to a virus. He told Kim that being on antibiotics could increase her likelihood of infection.
I gave him the DVD of Kim’s walks and the chart of her walks and he wanted to know if Dr. Sriram had measured her EDSS and we told him no. He said that walk times are not really indicative of measuring anything. I asked him what Kim’s last measured EDSS was and he said that he had not measured it since it’s normally done in a research environment. He seemed to ignore the chart, disk and data table, but he did put them in her file. He didn’t do any testing in the appointment.
So it was mostly a non-event. Her neurologist said that he could not agree to monitor her for Vanderbilt and that his practice is based on evidence based medicine. He added that for him, therapies must be academically proven. I understand and respect this, though I can see that he thinks we are just as wrong as we think he is. I got the impression that he lumps ABX in the same category as Ambertose, maybe a step below curcumin. At the close he did however say that if Kim feels that it’s helpful, it’s not his place to tell her that is isn’t. He said she should do what she feels is helping her.
So now we still need to find a local doctor to monitor Kim. Maybe her general physician.
Pulse 7
As we’ve come to expect, Kim lost her orgasm the first day and the pulse was a little tougher than pulse 6, but still manageable. Kim seems to have more die off and her walking has been more wobbly. There were a few days when walking up the stairway was hard and Kim needed to use her hands to lift and position her feet. She’s also added 1000 mg of Chlorella to her daily bucket o’ pills. It is August and we’ve had hot weather. But, I still have the Copaxone comment ringing in my head, could Kim’s slowness to recover from the pulse be Copaxone related? These last few days I notice Kim “pulling” out of the aftermath, of course we’re just a few days away from starting pulse 8 on September 1.
Energy
The summer and the boy’s camps and Lucy have gotten in the way of Kim’s continuing to walk kitchen laps. While she might start this back up, she has signed up for an aqua aerobics class. She did not sign up for the “handicapped” class, she signed up for the regular class. Starts in a week. I think this says something about her outlook that’s extremely positive. Kim’s timed 25-foot walk has maintained despite the tough month of pulse 7. We’ve also been going to TopGolf more regularly and Kim’s hand/eye coordination is holding its own. She has way fewer “misses” when swinging the golf club than she did 3 months ago. Kim is still very susceptible to heat (or humidity, depending on how you look at it) and sitting out at TopGolf when its 85 degrees is tough on her. I anticipate that this fall the cooler weather will help Kim to feel new improvements again.
Elections
I think it’s interesting that Mitt Romney’s wife and Michelle Obama’s deceased father have/had MS. I don’t care who you vote for and voting isn’t my point. I simply think, wouldn’t it be nice if one of them could get the government moving on MS like Roosevelt got Polio done? I imagine it’s a long-shot wish. It’s just that listening to Kim’s neurologist say that the therapy would have to be FDA approved to get his attention frustrates me. Isn’t there a way to get more attention on MS and most especially, on the ABX protocol?
Lucy
Lucy’s been keeping Kim busy too. She really is a brilliant dog and she’s learned quite well that “Bah” means “stop what you’re doing”. Or maybe it’s the brilliant owners? Or actually, it’s the brilliant people trainers we’ve been working with. Sarah, so intuitive you are - Soccer has not done so well and seems to lay around a lot, impervious to Lucy’s chewing and pouncing.
Joined: Feb 10, 2006 Posts: 358 Location: Northern Virginia
Posted: Mon Sep 29, 2008 2:59 pm Post subject: Your Faith Will Be Tested
Pulse 8
We began September with a Labor Day party at home. Kim felt good and she cooked up a storm and if you check your calendar, our party was on the 1st, Kim’s first day of her pulse. We delayed the first day of her pulse until the 2nd, the day she started her aqua aerobics class. Kim said the class was hard but she finished it on day 1 of pulse 8. On day 3 she had her second class and it went much better. She also had a couple falls on the first day, but recovered the following days. Kim tends to push her limits, which is good – she’s always looking to be reaching higher. I really, really respect this quailty in Kim. On Day 2, 3 and 4 Kim had chills. She also had Avoneskish night sweats one night. Kim said that she was not ambitious on day 4. She was disappointed with herself for taking a nap despite having work she wanted to do in the house. Days 5 and 6 were better for Kim, no falls and no chills. I’ve also noticed that Kim is doing much better at walking up the stairs in this pulse. Day 7 Kim had chills, but was otherwise doing fine.
Aqua Aerobics
It’s really a terrific thing. The boys are back in school and the first thing Kim wanted to do was sign up for aqua aerobics. Kim finds being in a class motivating. She also is one of the younger members of the class, yet finds the determination of the ladies there inspiring. We have talked about it a few times and I saw an analogy with Rica. I see Rica pushing herself to get better and find new improvements. I don’t see Rica solely waiting for the ABX to fix everything for her. I think the Aqua Aerobics class is just a start, but I’d say that continuing to be motivated to push your limits seems to be important.
I suppose another way of saying this is; ABX can’t do it alone. Much of the anecdotal measures we have here are impressions or accomplishemnts that are grouned in overcoming challenges. If we don’t continue to challenge ourselves, it’s much harder to feel and see results. No one is going to teleport us from point A to point B, we have to walk the walk and that requires personal effort. The amount of pride and feeling of personal accomplishment is directly proportional to the effort and struggle expended. I am so very proud of Kim’s desire to take this Aqua Aerobics class.
Vitamin D
I didn’t know it came in “flavors”, D2 and D3. I’ve learned from web research and posts at CPn that D3 is the one that’s better. I e-mailed Dr. Sriram and he said that it was fine to stay on the 6000IU D3 per day instead of switching to the 50,000 D2 per week.
Walk Chart
Kim’s getting real good with the weekly walk. It’s almost as if she has a weekly Olympic competition that she gears up for. She’s figured out that she walks faster after eatting. Just for disclosure purposes, I start the watch when Kim’s got her first step going and I click the stop when she’s steped on the mat on the other side. We could argue about me not being Swiss, but I figure it’s the same person with the same watch doing the same thing over time – so there is informal consistency. The watch measures hundredths of a second but the goal isn’t to be Michael Phelps, the key is in establishing a trend which is clear when charted.
I notice that Kim’s improvements were greater in the early walks and now that we are closing in on 4.5 seconds, we have to acknowledge that there is likely a limit to how much faster anyone can walk without running. We also need to focus on style, which is hard to measure. Some walks are more linear and others might have a little skew. Some walks tend to be klompier than others too. In any case, making the comparison with Fampridine is slowly becoming useless unless they publish results that extend the effects beyond 8-weeks.
This last weekend, Kim’s walk was very steady and sure. She didn’t curve askew. The 4.78 seconds doesn’t quite reflect how terrific her walk was.
Bump in the Chest
Over the last couple months Kim’s got little bumps on her chest that have given her fits. It’s like an area of them, not just one or two, like she has an area of course grit sand paper stuck on her chest. Does anyone know what this is?
Reading Journals Again
I’m back to reading stuff again. Recently another discussion here at TIM’s got me interested in how humidity effects disability. Remembering the chart of how MS is more common in northern places, I wondered about CPn in this way. I’d love to get ahold of a copy of the full paper, “ Transmission of Chlamydia pneumoniae”, which apparently contains the following conclusion that I found elsewhere. (I was searching the webpage for the word humidity)
Quote:
”Although under conditions of high relative humidity the infectivity of Chlamydia pneumoniae in the open air decreases rapidly, suggesting a direct mode of transmission under these conditions, it is probable that the transmission occurs in some cases indirectly since the microorganism can survive for up to 30 hours in a hostile environment (Falsey et al., 1993).”
”The percent survival of C. pneumoniae in aerosols was highest at high RH and at temperatures between 15 and 25°C. Dehydration appeared to be an important factor in the inactivation of C. pneumoniae, whereas extreme temperatures had a more limited influence on survival.”
Subsequently, I found a Way Better MS Map. I’d love for someone to explain these seemingly variant explanations.
”Your Faith Will Be Tested”
Sometimes I get so positive and encouraging and I lose sight of the fact that Kim has down times too. MS spouses need to know this. It’s human, it’s normal to have a down day; it’s ok to feel discouraged. Kim just updated her blog (Kimscupoftea’s Blog) this month and she noted how she could relate to the discouraged feelings of another ABX’er. Coincidentally, I have been reading “The CEO and the Monk”, which among other things briefly discusses a monastic term of old, “The dark night of the soul”. Yes, it’s kinda religious, but the concept is absolutely applicable to downtimes and most especially (with a few wording substitutions) to discouragement on ABX:
Quote:
When I was in the monastary, my spiritual director, Father Theodore, would occasionally talk to me about “the dark night of the soul.” It was a term used by the monks of old to describe the shadow side of an individual’s pursuit of personal holiness. This was a period of time marked by self-recrimination, discouragement, and a lack of hope. This arid wasteland of spiritual depression could last for weeks or sometimes months and was an inevitable part of one’s interior journey. “Your faith will be tested and you will feel lost and abandoned,” was the way he put it.
It’s things like this that really give me perspective.
Joined: Feb 10, 2006 Posts: 358 Location: Northern Virginia
Posted: Wed Oct 29, 2008 10:46 am Post subject:
A Bad Analogy
In the first week of October we saw the stock market crashing and Kim beginning the most difficult pulse yet, this being her 9th. Kim crashed in this pulse and while I spent a lot of time reading about stocks I also found myself reading about Chlamydia pneumoniae.
I started reading about how CPn infects leukocytes. I’ll read and post more about this later, but my point is that I’m beginning to see how crashing will set Kim up for a stronger recovery. I see the stock market this way too. I think there is a bottom that will start a multi-month rally.
The bad analogy is in the steep decline being a necessary prologue - a wiping out of the negative in preparation for strengthening to come. I know I sound like Chance the Gardner. But, this is the best I can do today.
Pulse 9
This was the hardest pulse yet for Kim and it started with a bang on day 1 Kim had chills, impaired balance and over all wilted feeling. She became easily frustrated and brought to tears over trying to adjust the mirrors in the car. Day 2 was a little better, Kim had a raspy voice, was chilled and tired most of the day. Despite an overall weakness, she was feeling engaged with what was happening around her. Day 3 Kim’s stomach felt upset and she had jumpy leg. She got frustrated over my poor grocery shopping effort. Day 4 Kim became more brain fogged and she was more sensitive to loud noise and by day 5 Kim said she really hated this pulse and did not feel like herself at all. This extended all the way to day 7.
And yes, I was playing around in a non-serious way in response to Kim’s wanting to know how to work the radio in the kitchen. I got slapped real good with a banana, which of course remined me of “How to defend yourself when attacked with a banana”.
On the positive side, Kim didn’t have any bladder issues the entire pulse. Kim also caught a cold somewhere along the way which brings to mind several thoughts.
Isn’t it Great to be Sick!
While having a cold might seem like a bad thing (and believe me Kim’s not happy about how this cold makes her feel), it does suggest a more regulated immune system. But I want to think about it deeper than that. If you’ve done Novantrone, you know that for the first week after the infusion, you feel like total crap. Your white count is reduced very low then it comes back. I believe that ABX is doing something similar in wiping out infected lekocytes. In this pulse a significant load of them got wiped out and this caused inflamation and all the icky feeling. But this also left Kim more open to catching a cold. We don’t have a blood test right now to verify this thinking, but I do see similarity between the post Novantrone infusion period and pulse week being complemented with a cold.
Shocker of the Month
The evening of Friday, October 10th, I was racing around the house turning off lights, locking the doors, etc. and responded in good fun by trying to race me to the stairway. In her moment of silliness, without thinking about it ……. Kim Ran! Or jogged, or maybe lightly jogged. About 10 feet. But it was not walking, Kim was momentarily airborne and I saw the whole things with my own eyes. I said, "how long have you been able to do that?", in an AH HA-like tone. She said, "two seconds, you think if I could run, I'd wait to tell you?" So at 1:00 am on a Friday night there we were, timing Kim's jogging/running across the 25-foot course we have in the kitchen. She could jog the 25-feet in about 4.0 seconds.
Kim has had questions about whether the ABX is really working.
This is not new, click back to page 7 and read about “Pseudo Exacerbation”. Despite her flirting with running, she's had a tough time the past month or so. We've bumped her up to 2gm Chlorella per day and she is still taking charcoal at night. But, Kim keeps asking me if the ABX is really helping. I've been recounting for her how far she's come and how several symptoms are vastly improved, but I can hear in Kim's voice that she's asking in relation to how she feels .... today. In all my recounting for Kim I realized that I keep using the words "die-off" and "inflammation". Kim takes charcoal and chlorella for the die-off, but suddenly, I really paid attention to the word "inflammation".
A few hours of thinking and google and reading at CPn Help netted us Naproxen. I keep this stuff in the house because I have on and off back pain. When I take them, I go to script levels. For Kim, I broke the Aleve tablets in half and spread them into Kim's noon and night vitamins – a very low dosage.
On day 1, also a day-one for Flagyl, Kim said she felt better than normal for a first day of the pulse. On day 2, I noticed that some of the red bumps on Kim's face were clearing and she was pretty tolerant of the pulse. I think it's helping, but it's too early to tell. I can't believe that I didn't think of this before. Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk
Ken
I only have a minute right now but wanted to respond to this with two thoughts that crossed my mind as I read it:
1) Kim had dramatic improvement initially which was wonderful and exciting but also sets a person up to think how much better he/she will be in just a few months. The reality is that the dramatic improvements slow down and although improvements still come, in a lesser degree, it is hard not to be disappointed that they aren't coming as fast as they were initially. I think that is where Kim is now. You know the saying "can't see the forest for the trees"? That is probably how it is for Kim. She doesn't notice the subtle improvements right now because she is looking at the big picture of being well. I believe it will come (maybe not as fast as she wants, but it will).
2) She seemed to tolerate flagyl well at first. But the experiences she had with it with the last pulse was exactly how it made me feel. You know-feel worse before you feel better! But when Dr. S switched me to Tindamax I was able to tolerate it soooo much better. Maybe that would help her to???
I have to run but will get back to you later. Give Kim all my best and tell her to keep on keepin' on! That's what she has to do!
Joined: Feb 10, 2006 Posts: 358 Location: Northern Virginia
Posted: Mon Dec 01, 2008 11:20 am Post subject: Don't Make Pie Crust On Pulse Week
Pulse 10
Kim started her pulse a week early because our anniversary is in the first week of November and we didn’t want to be con-Flagyl for our celebration. Kim added an anti-inflammatory, Aleve to her regimen for pulse 10. On the evening before Kim started her pulse she took half an Aleve. The next morning she said that she thought she felt a little better than normal. She started the first day of the pulse with half of an Aleve in her noon supplements and half in her evening supplements. Kim did not report any side effects on day one.
On day two, Kim reported some difficulty working her left hand – the glove effect. She also got agitated with a pie crust because of her hand, but outside of that, no other issues on day 2. I also noted that Kim’s skin is clearing a bit after just a couple days of low dose Naproxen (not naltrexone).
On day 3 Kim was doing better than expected with her hand working a little better.
On day 4, Kim went to aqua aerobics and got pretty tired for the rest of the day. Kim sometimes gets a raspy voice when she does her pulse, which started on day 4 too. Kim also got somewhat frustrated with me when we talked about our son’s goals for school and our need to buy some extended day care coupons from the schoool. This is what I’d call light fog. Kim said she hated feeling that way, she just wanted to tear the skin off of her so she could be herself.
On day 5, Kim was feeling more tired and her voice was raspy again. She was not motivated to get ready for Halloween. She seemed somewhat foggier than day 4, but I feel that the “real” Kim is in there just itching to get out. She didn’t feel like decorating, but had tears as she told me that how much she wanted to feel like decorating. I bumped Kim’s Aleve’s to a full tablet at night and at lunch. I assured Kim that she would feel better next week for our anniversary.
Day 6 was better and Day 7 was a pretty good day too. I think that it made a big difference bumping the Aleve up the last half of the pulse. Kim also got a yeast infection which seems to be under control now. On the very next day, post-pulse day one, Kim sounded very chipper and sharp, slowly searching for lost thoughts. Kim also got her orgasm back about 10 days post pulse, which seemed to be much sooner than in the last two pulses.
So here are some potentially relevent ideas I have found about MMP-9:
Quote:
”Specifically, MMP9, which is absent in the CSF of normal individuals, is upregulated in MS and in other inflammatory neurological diseases.” … “By using Gadolinium-Enhanced Magnetic Resonance Imaging (MRI) techniques, it was found that MS patients with high MMP9 and low TIMP1 levels tended to worsen.” … “When injected into the CNS, MMPs can disrupt myelin and cause demyelination.
”92-kDa gelatinase (MMP-9) and matrilysin are selectively upregulated during AT-EAE and thus may contribute to the pathogenesis of inflammatory diseases of the CNS.”
”We have shown that early blockade of MMP’s stabilizes vascular function, improves motor recovery, and reduces white matter damage.” … ”These findings offer the first mechanistic link between MMP’s and early demyelination in the injured spinal cord.” … ”MMP’s also promote demyelination.” … ”Both direct and indirect evidence support the involvement of MMP’s in degradation of myelin. Direct delivery of MMP’s into the parenchyma results in tissue damage including disruption of myelin.”
”Because microglia and/or macrophages release factors that directly contribute to oligodendrocyte injury, we propose that TIMP-1 may be an endogenous regulator of macrophage/microglial activation either through inhibition of a metalloproteinase, or perhaps even through a direct MMP-independent process. Thus, an important physiological action of TIMP-1 may be to delimit macrophage/microglial activities and therein permit effective remyelination after injury, and, consequently, TIMP-1_/_ mice exhibit more persistent oligodendrocyte disruption.”
”Gelatinase B (MMP-9) is capable of destroying the blood-brain barrier, and of cleaving myelin basic protein into immunodominant and encephalitogenic fragments, thus playing a functional role and being a therapeutic target in multiple sclerosis. Here we demonstrate that gelatinase B proteolytically cleaves IFN-b, kills its activity, and hence counteracts this cytokine as an antiviral and immunotherapeutic agent. This proteolysis is more pronounced with IFN-b-1b than with IFN-b-1a. Furthermore, the tetracycline minocycline, which has a known blocking effect in experimental autoimmune encephalomyelitis, an in vivo model of acute inflammation in multiple sclerosis, and other MMP inhibitors prevent the in vitro degradation of IFN-b by gelatinase B.”
There’s a lot more if you want to work Google yourself, in a nutshell MMP-9 seems to be a huge negative in MS, it might even be chewing on your myelin............
So what’s this have to do with ABX therapy?
Quote:
An alternative explanation for an effect of Doxycycline on coronary events may lie in its ability to treat Chlamydia pneumoniae.
”C pneumoniae are able to multiply within macrophages, where they persist for long periods without causing any damage until they are reactivated by immunosuppression or by coincidental infection with other organisms.” … “Stimulation of monocyte-derived macrophage 92-kDa gelatinase production by C pneumoniae occurred via the chlamydial derived proteins Omp2, MOMP, and HSP60.
There are two threads (one and two) at CPn Help that Farandaway (John) and I have been pinging in. So far I've gotten the idea that Naproxen can impact vitamin D3 and Kim is switching to Ibuprofen during the day time and moving her vitamin D3 to the late evening. The idea is to space the Ibuprofen several hours away from the D3.
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