This Is MS Multiple Sclerosis Community: Knowledge & Support

Lucy and Soccer



She is a Mini Goldendoodle. Oh, no soccer isn't getting trained......
Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

She's adorable Ken!

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

Soccer looks like he's past getting trained.

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

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.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken
Thanks for the update. I have been wondering how Kim was doing this month. Give her my best!
Lori

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.

Walk Date ______ Seconds ____ 8-Week Change

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 _________ 25.8%
04/20/08 ________ 10.81 ________ -12.3%
04/27/08 ________ 12.28 ________ -12.6%
05/04/08 _________ 8.97 _________ 46.4%
05/11/08 _________ 7.81 _________ 17.4%
05/19/08 _________ 6.60 _________ 23.2%
05/31/08 _________ 6.50 _________ 30.4%
06/08/08 _________ 5.78 _________ 26.0%
06/15/08 _________ 6.03 _________ 44.2%
06/22/08 _________ 6.16 _________ 49.8%
06/30/08 _________ 6.06 _________ 32.4%
07/13/08 _________ 7.72 _________-17.0%
07/19/08 _________ 5.19 _________
07/26/08 _________ 5.53 _________ 14.9%
08/03/08 _________ 4.72 _________ 18.3%
08/10/08 _________ 5.35 _________ 11.3%
08/17/08 _________ 5.50 _________ 10.7%
08/24/08 _________ 4.91 _________ 19.0%
08/31/08 _________ 4.84 _________
09/07/08 _________ 4.62 _________ 40.2%
09/14/08 _________ 5.06 _________ 02.5%
09/28/08 _________ 4.78 _________ - 1.3%

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)



……but then I also found a paper titled, “Influence of Temperature and Relative Humidity on the Survival of Chlamydia pneumoniae in Aerosols”, which says:



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:



It’s things like this that really give me perspective.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

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.

I started Googling and learned that Kim has been breaking into the range of times considered to be “minimally effected by MS”, 3 to 5 seconds. I found this in the abstract of the article “The significant change for the Timed 25-Foot Walk in the Multiple Sclerosis Functional Composite”. I also learned that Kim is required to walk the 25-feet and that she cannot jog or run it. I found this in the Dictionary of Multiple Sclerosis By Lance D. Blumhardt, Xia Lin, Serono Symposia on page 212.


Aleve

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<br /><br />

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!

Lori

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.


MMP-9

So I read Longing4Cheese’s post about MMP-9 and this got me interested in how MMP-9 might relate to MS, CPn and everything. I remembered reading about MMP-9 and CPn in Chlamydia pneumoniae infection of microglial cells in vitro: a model of microbial infection for neurological disease. It’s one of the articles I originally referenced in the “Notebook”, many posts ago.

So here are some potentially relevent ideas I have found about MMP-9:


Metalloproteinases in Biology and Pathology of the Nervous System
This is a great “Learn about MMP’s” article, with excellent references.
---------------


Matrix Metalloproteinases Limit Functional Recovery after Spinal Cord Injury by Modulation of Early Vascular Events
---------------


Matrix metalloproteinase-9 and -7 are regulated in experimental autoimmune encephalomyelitis
Yes, it’s EAE, but they are identifying MMP-9 as a likely source of inflammation.
---------------


Inhibitory Effect of Polyunsaturated Fatty Acids on MMP-9 Release from Microglial Cells—Implications for Complementary Multiple Sclerosis Treatment
I thought this was an interesting reason to be taking fish oil.
---------------


Matrix metalloproteinase-9 (gelatinase B) is selectively elevated in CSF during relapses and stable phases of multiple sclerosis
It’s a pretty straight forward study linking MMP-9 and MS
---------------


Experimental models of neuroprotection relevant to multiple sclerosis
The Journal of Neurology publishes research that suggests Minocycline has protective qualities.
---------------


Matrix metalloproteases activity and ultrastructural changes in the early phase of experimental allergic encephalomyelitis. The effect of oral treatment with spinal cord hydrolysate [correction of hydrolisate] proteins in Lewis rat. The pilot study
It’s another EAE study, but this one shows a direct impact on myelin.
---------------


The Effects of Acute and Extended Inhibition of Matrix Metalloproteinases on Demyelination and Functional Recovery after Spinal Cord Injury
Yes, it’s a spinal cord injury article. But, it’s very much about damage to myelin involving MMP’s.
---------------


Persistent Macrophage/Microglial Activation and Myelin Disruption after Experimental Autoimmune Encephalomyelitis in Tissue Inhibitor of Metalloproteinase-1-Deficient Mice
Tissue inhibitors of metalloproteinases (TIMPs), which inhibit MMP’s, mitigate myelin injury. It’s slightly round-a-bout point, but it’s a supportive point nevertheless.
---------------


Gelatinase B/matrix metalloproteinase-9 cleaves interferon-b and is a target for immunotherapy
Really interesting, the interferons are known to have diminished effects that are attributed to neutralizing antibodies (NAB’s) but this article suggests that MMP-9 might fill atleast part of the role. Minocycline is discussed as useful as an MMP-9 inhibitor.
---------------

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?



Clinical and Biochemical Results of the Metalloproteinase Inhibition with Subantimicrobial Doses of Doxycycline to Prevent Acute Coronary Syndromes (MIDAS) Pilot Trial
It’s not MS, but reading this gives you a strong impression that CPn, MMP’s and Macrophages could very well be detrimental together.
---------------


Chlamydia pneumoniae Proteins Induce Secretion of the 92-kDa Gelatinase by Human Monocyte–
Derived Macrophages
This article also discusses CPn causing the activation of NF-kB
---------------

And then there’s this one:

EMMPRIN (CD 147) is a central activator of extracellular matrix degradation by Chlamydia pneumoniae-infected monocytes. Implications for plaque rupture
---------------

And this one:

Matrix metalloproteinase-9 expression is associated with the presence of Chlamydia pneumoniae in human coronary atherosclerotic plaques
More on heat shock protein later.
---------------


Ibuprofen

There are two threads (one and two) at CPn Help.org 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.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Pulse 11

Kim started pulse 11 on Saturday, November 29th with the intent that she would be able to feel more “active” the following weekend as we are closing in on the Christmas holiday. Kim started taking 400 mg of Ibuprofen at lunch and at dinner to control inflammation and we temporarily scrapped the idea of using Naproxen for reasons posted last month.

Days 1 and 2 were ……… uneventful. Seriously, it seemed as though Kim wasn’t on a pulse week at all. The only effect that was slightly noticeable was that she got a little tired at the end of day 2 and was walking a little slower. Kim felt like she was belligerent over the weekend, but (1) that’s a very far cry from Kim being brain fogged and (2) the boys behaved like they were brain fogged. I told Kim that maybe it had to do with the Ibuprofen she was taking. She didn’t believe that and I said, “Well why not stop taking it and see what happens.” I think I was out of line, but it was honestly what was on my mind.

Day 3 was much like 1 and 2. Kim was a little slower wallking, but that was about it.

On day 4 Kim got slammed. She wasn’t walking very well and she was feeling extra annoyed with the boys. By early evening Kim just wanted to watch TV. I even took away a bunch of Lucy’s/our dog’s toys to calm Lucy down, especially the squeeky ones. She decided to start back up on the Ibuprofen on day 5.

Days 5 and 6 were incrementally harder. Kim was not brain fogged, but very short if things weren’t working exactly as she wanted. When I called Kim on day 6 she said she wasn’t doing well. She said she had gone through feeling hot and then feeling cold and her stomach hurt a lot despite taking Chlorella and Glucose. I suggested that she not take Ibuprofen if her stomach was hurting. I’m also wondering about oregano oil. One good thing, her left hand and leg felt just fine.

On day 7 Kim started out feeling pretty good. She dared to think that maybe those last two extreme pulses wiped out a lot of bacteria and …… could it be …. there is less left to kill? Kim had a very good final day in pulse 11. No urgent peeing or brain fog. Wow!


Recovery?

Two-days post pulse, Kim could begin to sense orgasms again. This is new and positive. We don’t know what this means, but it seems like a positive. On the same day Kim had a really good weekly walk. We did the walk late, like around 10:30, which usually means that Kim is more tired and less stable. This was on the second post pulse day also, so we were both expecting a slower walk, maybe close to 6 seconds. Kim clocked in at 5.03 seconds! But even better, she really had stability and there was a firmness and focus in her walk that was unexpected. Kim was surprised how it felt.


Heat Shock Protein 60

While I was reading about MMP-9 last month, I found a lot of references to Heat Shock Protein 60. Apparently there are types of Heat Shock Protein 60, but of interest is that there is a human one and a chlamydial one. Interestingly enough the genetic sequencing of the two are similar.


Chlamydial and human heat shock protein 60s activate human vascular endothelium, smooth muscle cells, and macrophages. This one is subtle, yet I found it powerful after I reread it several times. CPn infected cells were found to release chlamydial heat shock protein 60 (HSP 60) AND human HSP 60.


Chlamydial Heat Shock Protein 60 Localizes in Human Atheroma and Regulates Macrophage Tumor Necrosis Factor-a and Matrix Metalloproteinase Expression. The idea I get here is that human and clamydia heat shock protein often coexist together and perhaps (a very big and speculative perhaps) the immune system doesn’t do such a good job distinguishing between them in.

And then I found this:


Autoimmunity to Human Heat Shock Protein 60, Chlamydia pneumoniae Infection, and Inflammation in Predicting Coronary Risk. Doesn’t this just get you thinking? The cardiology folks seem to have a handle on something we’re still arguing with our neurologists about. CPn tied to autoimmunity, how about that? Wouldn’t it be amazing to learn in the end that everyone is right – perhaps MS is an autoimmune AND bacterial pathology.

So along this line of thinking, here’s a really good article that talks about bacterial (CPn) heat shock protein and human heat shock protein in several auto-immune pathologies. It’s a long article, but very highlightable. You’ll find LOTS of MS words to get your mind clicking. Here’s just a few quotes:


Role of Heat Shock Proteins in Protection from and Pathogenesis of Infectious Diseases. The real kicker to this article is somewhat subtle. The title says, “Pathogenesis of Infectious Diseases. The article is very heavy on Autoimmune Diseases. The implication is ………..


Travels

We are looking forward to Kim’s one year check up in Vanderbilt next month. Kim will get an MRI. I’ll be back with reuslts.

Have you been to Disney World? Kim and I are taking the boys in March. They love Starwars and I’m wondering if anyone can give us advice on what works and doesn’t work in Disney World. We are going to be time crunched so anything that helps us move more deliberately from thing to thing would be helpful. The boys are 10 and 12. I’ve heard that a FASTPASS is important, what is it? How is Disney with a scooter? Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

One Year Anniversary

As Kim approaches one year on the combined antibiotic protocol we are two-weeks away from her first MRI since being on antibiotics. While she did share with me this weekend that her sense of “how she will know that she is in the process of being cured” was that she would be able to go in a grocery store to pick up a couple of items like milk and eggs - without a cart, I tend to look at where we have come from as providing direction on where we are going. Kim is improved, though it’s a slow and sometimes difficult path at times.

Kim also acknowledges that she has not really noticed the gradual improvements that I do, most likely because she is experiencing them every day. For example, I asked Kim If she can remember the last time she scooted down the stairs on her butt because she was having trouble walking. She couldn’t remember the last time though she knows that there have been times that she did that in the past.

Here are some other observations:

Brain Fog: Way less than before. Before Kim would have days when having a conversation that required significant details would have been frustrating for Kim. It was like she would become overwhelmed with information that she couldn’t handle.

Sensitivity to Light: Sunglasses were an integral part of Kim’s daily life. She had lots of them, especially in the car. If Kim could not find them when we got in the car, she would ask me where her glasses were. She had this cute way of wearing them over her prescription glasses. Kim no longer “needs” sunglasses. It’s not an urgent issue anymore.

Body Heat: Kim would be cold all the time. Perhaps even shivering. I would be comfortable or warm and Kim would be cold. We might be driving in the car and I might turn on the air conditioning and Kim would say she was already cold. Kim’s body temperature now seems to be more normal. Her feet are warmer.

I realize that much of those are symptoms and not necessarily what we might call primary indications of disability. I also realize that all of this is anecdotal. More significant changes are:

No Exacerbations: When Kim was still RRMS she would have about one exacerbation and solumedural treatment a year. While SPMS Kim’s had one solumedural and one IVIG following exacerbations. In the past year while on antibiotics, Kim has had no exacerbations.

Aqua Aerobics: I think it was about two or three years ago that Kim stopped going to physical therapy. This past fall Kim made the jump to signup for an aqua aerobics class at the local recreation center. Although the class has not been easy, she has re-registered for the winter session.

Peeing: Before Kim started the protocol we were regularly buying bladder control protection products. Now we don’t.

Sexual Climax: Following Kim’s fifth and final Novantrone infusion Kim lost her ability to achieve sexual climax. This lasted over 3 months until Kim was on antibiotics.

Walking: This is the best measured improvement. One year ago at Kim’s first Vanderbilt appointment she walked 25-feet in 20.24 seconds. This weekend she walked our kitchen course in less than 5 seconds. We generally do a videoed walk every week and I have all the walks in a chart that I need to upload before I can add it to the post.

Of course a big part of this is the MRI she will have in two weeks. I’ll be back to let everyone know what our results are after we return from Vanderbilt.

Religion, Sex and Politics

Add “cure” to the list. Ok, maybe not, but I want to be clear that I have learned that this is not a word to be taken lightly. Kim is experiencing reversals of several symptoms, which gives us great hope. She follows in the path of some of you who have found success on the combined antibiotic protocol. After the Grocery Shopping criteria, I like Dr. Weiner's scale of achieving "cure" (he wrote "Curing MS"). Dr. Weiner defines personal cure as three years without relapse or progression. Kim’s got one year down and two to go.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken
Thanks for posting this. From all that you have listed I would say that Kim has had a lot of improvement. As I said before, I think for her it is that she "can't see the forest for the trees"! When you live it day to day it is hard to see the improvement. But for those around us the improvements are more obvious. That is why it is so helpful to 1)keep a journal and 2)to have a support system surrounding us. That way we can be reminded how far we have come!
Lori

Thanks Lori. Maybe we form a mutual improvement observation society. This actually, gives me an idea. What if we had a thread at cpn or even here that asked folks to state up front what would be their sense of the 3 things that would signal improvement for them? Then we'd ask folks to comeback and update the thread on their goal? I guess it wouldn't work here because you'd need more people. Just thinking out loud again. What did you think of the "Begin Here" post? Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken
I think the "Begin Here" thread is a helpful place to start if someone is interested in looking into this protocol. I know when I first looked into this I began here at this site (This Is MS). I then went to the CPn Help.org site for more in-depth information. But your "Begin Here" thread is a good quick overview for someone just exploring this. It was nice of you to do this.
Lori