Posted: Tue May 22, 2007 8:12 am
WOW sounds good..Robbie, this is going to be as big a change in the status quo as when Marshall and Warren proved that stomach ulcers were caused by helico bacter pylori:
This Is MS Multiple Sclerosis Knowledge & Support Community
Welcome to This is MS, the leading forum for Multiple Sclerosis research and support. Join our friendly community of patients, caregivers, and researchers celebrating over 20 years of delivering hope through knowledge.
https://www.thisisms.com/forum/
Chlamydia pneumoniae links
Page 2 of 3
Posted: Tue May 22, 2007 11:15 am
Agreed, Sarah. I was certain I was headed to a wheelchair in short order, what with every new symptom I was experiencing on an almost daily basis. Yesterday, I climbed my two flights of stairs twenty-two times as I helped or monitored my workmen, I scraped hundred year old paint off two huge windows, shopped for restoration supplies and hauled them home, scrubbed a 14 x 18 floor, painted two basement window frames and two antique iron security grilles and STILL joined a friend for dinner. On diagnosis, taking a shower exhausted me and I had to nap.
I am on antibiotics for nineteen months now and feel great. A 'reminder' here or there, like the ghost of a memory of foot burn or unsteadiness, but I'm not sure it's the remainder of debility or a nerve pathway memory of debility. I know it takes time to rebuild nerve connections, as it took over a year when I had my fingertip reattached after a power tool accident. All I know is, I'm hopping, skipping and jumping just fine and I no longer fear a progression into a wheelchair or worse. I am living proof this works and works well. (As is Sarah, who has returned to painting at world-class levels!)
I am on antibiotics for nineteen months now and feel great. A 'reminder' here or there, like the ghost of a memory of foot burn or unsteadiness, but I'm not sure it's the remainder of debility or a nerve pathway memory of debility. I know it takes time to rebuild nerve connections, as it took over a year when I had my fingertip reattached after a power tool accident. All I know is, I'm hopping, skipping and jumping just fine and I no longer fear a progression into a wheelchair or worse. I am living proof this works and works well. (As is Sarah, who has returned to painting at world-class levels!)
thoughts on this subject
Posted: Tue May 22, 2007 3:58 pm
I've found the best description of the mechanisms of Chlamydia Pneumoniae on Cpn Help at this address: CPn Help/?q=recentobservations
I haven't been posting much lately because I am busy getting on with my life. My business has been improving over the last couple of years, as is my golf game.
Five years ago, I thought I had little to look forward to in my future. I just bought a small home in a rural subdivision and look forward to many more years of golf. Life is good on this side.
Dx'd MS in 1984. RRMS-SPMS. Started Mino in May '04. Wheldon protocol since Oct '84. Still moving forward instead of backwards.
I haven't been posting much lately because I am busy getting on with my life. My business has been improving over the last couple of years, as is my golf game.
Five years ago, I thought I had little to look forward to in my future. I just bought a small home in a rural subdivision and look forward to many more years of golf. Life is good on this side.
Dx'd MS in 1984. RRMS-SPMS. Started Mino in May '04. Wheldon protocol since Oct '84. Still moving forward instead of backwards.
Posted: Wed May 23, 2007 2:10 am
Thanks Robbie, 
for copying and pasting some of this in the General Interest section. I would have got too much critisism from some quarters had I done it.
Perhaps we will have Brock joining Colin for a game of golf sometime!
Sarah
for copying and pasting some of this in the General Interest section. I would have got too much critisism from some quarters had I done it.Perhaps we will have Brock joining Colin for a game of golf sometime!
Sarah
decided to come back
Posted: Wed May 23, 2007 7:26 am
ok, I'm back.
Of course all of this, most of the stuff posted here is theory. We are all here to work on theory in hopes of developing our own understandings.
Questions:
1) Which white blood cells are the ones that are implicated in the theoretical pathology of Cpn in MS?
2) Has anyone done a statistical study of folks who have Cpn v/s don't have Cpn and compared the rates of illnesses in the two groups?
3) Given the strong likelihood that your average neuro is professionally restricted from acting on this, which kind of doctor is best to approach with this idea and what should we ask for? How do we present this desire to be tested?
Today, I see this as a "what do you have to lose?" idea. It certainly can't hurt to get tested, right? So how does one go about this without imposing on your doctor's role as your medical expert? napay
Of course all of this, most of the stuff posted here is theory. We are all here to work on theory in hopes of developing our own understandings.
Questions:
1) Which white blood cells are the ones that are implicated in the theoretical pathology of Cpn in MS?
2) Has anyone done a statistical study of folks who have Cpn v/s don't have Cpn and compared the rates of illnesses in the two groups?
3) Given the strong likelihood that your average neuro is professionally restricted from acting on this, which kind of doctor is best to approach with this idea and what should we ask for? How do we present this desire to be tested?
Today, I see this as a "what do you have to lose?" idea. It certainly can't hurt to get tested, right? So how does one go about this without imposing on your doctor's role as your medical expert? napay
Posted: Thu May 24, 2007 3:07 am
Here is a piece published by David yesterday over on CPN, in response to a query about double blind trials:
Naypay, you really do sound like an accountant. If you really want to find something out, you investigate, not just ask other people to do the work for you. If you do investigate yourself, you remember it more.
Sarah
The two trials which found improvement in MS using antibiotics are the US one (S. Sriram, C. Stratton and co-workers) and the Canadian one (L. Metz and co-workers). The US trial is particularly compelling because it showed objective halting of the rate of loss of grey matter. As far as I am aware the only trial which found no improvement is that of Woessner et al. [Woessner R, Grauer MT, Frese A, Bethke F, Ginger T, Hans A, Treib J. Long-term Antibiotic Treatment with Roxithromycin in Patients with Multiple Sclerosis. Infection. 2006 Dec;34(6):342-4.] This last is badly flawed in that it used intermittent monotherapy with a macrolide, likely inducing persistence in the organism without eradicating it. An excellent discussion of the problems of treatment of chronic chlamydial infectionsi can be found here [Villareal C, Whittum-Hudson JA, Hudson AP. Persistent Chlamydiae and chronic arthritis. Arthritis Res. 2002;4(1):5-9.] This is a highly recommended article, and the full text is available in pdf format. The authors ponder whether eradication of chronic chlamydial infection is possible. Fortunately, it is; Chuck Stratton and colleagues found ways to address all forms of the organism simultaneously, and have demonstrated this in tissue culture and animal studies. It's a brilliant insight, and it works in humans, too.
Are double blind studies necessary? Not strictly in progressive MS where the natural history is toward inexorable deterioration. Halting that deterioration is of itself completely unprecedented. Double blind studies are something of a shibboleth. They are often used to make a big noise about tiny statistical differences. They are likely to be difficult to recruit for; if you had a wife or daughter with rapidly progressive disease you'd want her treated, wouldn't you, rather than risk her languishing on a placebo arm. Of course, the situation is rather different in mild relapsing-remitting disease.
Acceptance of MS being primarily an infection is difficult, not because of the evidence, which is both abundant and difficult to refute, but because of the difficulty of effecting a paradigm change. All the eggs are in the autoimmune basket.
Naypay, you really do sound like an accountant. If you really want to find something out, you investigate, not just ask other people to do the work for you. If you do investigate yourself, you remember it more.
Sarah
Re: decided to come back
Posted: Thu May 24, 2007 3:57 am
dont know.notasperfectasyou wrote:1) Which white blood cells are the ones that are implicated in the theoretical pathology of Cpn in MS?
Cant remember. But I do remember some study (cheq I think) that studied farmers (who worked with animals and therefore exposed to bacteria) and found they were generally more prone to illness. Not specifically MS.notasperfectasyou wrote:2) Has anyone done a statistical study of folks who have Cpn v/s don't have Cpn and compared the rates of illnesses in the two groups?
From what I understand, the problem is that you cant really test for it, or everyone would show positive, and hence the controversy.notasperfectasyou wrote:3) Given the strong likelihood that your average neuro is professionally restricted from acting on this, which kind of doctor is best to approach with this idea and what should we ask for? How do we present this desire to be tested?
As for which doctor to speak to, I asked my general gp. He was comfortable with it, as he writes scripts for these abx's all through the day. Its not like yr asking for drugs that are abused, or have a bad safety profile.
I took to him various print outs such as that from PubMed. The "other" website will have many links to published studies.
Hope this helps.
investigation
Posted: Thu May 24, 2007 5:53 am
a compliment, thank you!Anecdote wrote:Naypay, you really do sound like an accountant.
exactly! I great way to initiate an investigation is to ask folks who are experts in the area under review.Anecdote wrote:If you really want to find something out, you investigate
CureOrBust, Thanks for taking a shot at this. I think it would be fascinating to learn that a large percetnage of folks with MS have this Cpn thing. I did try reading the post that was a "role call" for this but it didn't seem to go anywhere. ciao, napay
Posted: Thu May 24, 2007 6:38 am
Most of the population has antibodies to cpn by the time they're fifty, so whether it's 'interesting' or not doesn't really matter. Start with NAC. If you feel flu-like when you take it, you are reacting to cpn kill-off.
NAC
Posted: Fri Aug 17, 2007 11:41 am
MacKintosh,MacKintosh wrote:Most of the population has antibodies to cpn by the time they're fifty, so whether it's 'interesting' or not doesn't really matter. Start with NAC. If you feel flu-like when you take it, you are reacting to cpn kill-off.
I'm not sure if this works out since my wife has been taking NAC for more than a year already. She doesn't have regular "flu-like" symptoms so I'm guessing this would not be a helpful thing to try. Is there another way to check this out?
napay
Posted: Fri Aug 17, 2007 1:23 pm
I didn't either, so it isn't always the case.............Sarah
Posted: Fri Aug 17, 2007 2:06 pm
Well, I don't know of anybody who has flu-like symptoms after a year on NAC. Most report a few days to a couple of weeks, at the most. Unless you're looking for it, you might not even notice the nasal drip or the achey calves or the stuffy ears, to be honest. At least, by already taking NAC, she is nipping one phase of cpn in the bud.
I don't have the time at the moment to cut and paste from the cpn website(racing between work and a dinner party), but there are a couple of lengthy discussions thoroughly addressing cpn testing over on cpn help dot org. It's difficult, regardless, as the bacteria is a stealth bacteria, living inside the cell rather than ON it, so it often doesn't show up on standard tests (which test what's on the OUTSIDe of cells). Basically, if you test positive, great, and if you don't test positive, you could easily still be infected.
I am reminded of an old Ann Landers column. "Q: Should I start law school or am I too old? A: Well, in three years you will be three years older, regardless of whether you go to law school or not. Wouldn't you rather be three years older and be an attorney than not?" I didn't research antibiotic therapy for two years. I DID it. And now it's almost two years later and I'm healthy, rather than it being two years later and still being locked in a downward MS spiral.
I don't have the time at the moment to cut and paste from the cpn website(racing between work and a dinner party), but there are a couple of lengthy discussions thoroughly addressing cpn testing over on cpn help dot org. It's difficult, regardless, as the bacteria is a stealth bacteria, living inside the cell rather than ON it, so it often doesn't show up on standard tests (which test what's on the OUTSIDe of cells). Basically, if you test positive, great, and if you don't test positive, you could easily still be infected.
I am reminded of an old Ann Landers column. "Q: Should I start law school or am I too old? A: Well, in three years you will be three years older, regardless of whether you go to law school or not. Wouldn't you rather be three years older and be an attorney than not?" I didn't research antibiotic therapy for two years. I DID it. And now it's almost two years later and I'm healthy, rather than it being two years later and still being locked in a downward MS spiral.
Posted: Sat Aug 18, 2007 2:16 am
If you get no reaction to NAC because of the time it has already been taken, the surest way to check is to start doxycycline. I started straight on that before NAC. Unfortunately I don't remember much of my reactions because my disease was affecting my cognition very badly, but I do vaguely remember the night sweats, feeling so tired I wanted to sleep all the time and a certain amount of gastro-intestinal upset. Even this isn't guaranteed, though. Well, unless people experience it but don't admit to it!
By the way, naypay, how much NAC has your wife been taking? If only 600mg, for example, if she ups it to 2400mg, she might still get a runny nose. I did when I started it several months into abx.
Sarah
By the way, naypay, how much NAC has your wife been taking? If only 600mg, for example, if she ups it to 2400mg, she might still get a runny nose. I did when I started it several months into abx.
Sarah
Posted: Sat Aug 18, 2007 6:37 am
Sarah, I still get the runny nose when I take all 2400mg at the same time. Now that I'm aware of it, I sometime take the NAC all at once just to provoke the reaction. I figure the concentration of taking the daily dose (which I usually split in half, morning and night), might help to hit the cpn bacteria in my sinuses harder. I don't recommend it to newbies, though.
Posted: Sat Aug 18, 2007 6:56 am
No, not every day, but just the once for a try-out. The thing is, though, when I started it, straight away at full-dose all I got was a runny nose.
Sarah
Sarah