Interesting "bacteria" story...

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Interesting "bacteria" story...

Postby Chris55 » Sun Sep 17, 2006 9:46 am

I know this is not "MS related" but certainly could be (read on FOX NEWS website last week). Briefly, a lady with asthma so severe she was given 6 months to live. On a "hunch", her doctor performed a lung biopsy and found, guess what? A bacteria--which he treated with antibiotics. The lady has improved dramatically. What is interesting, however, is that he tested all of his patients and found 50% had this bacterial infection.

How many years have we been treating asthma? And only NOW do they find a bacteria. Very similar to the stomach ulcer...which only recently when looking at the history of this medical condition was a bacteria found responsible for the common stomach ulcer. And the researcher had to literally ingest the bacteria to prove to the medical community it actually was a bacteria!

Repeating myself again, I am on medication for periodontal disease. In some of us, our bodies release too many enzymes in response to the inflammation caused by gum infection. This actually causes gum detachment. I take 2 very low doses a day of a drug, Periostat, which stops this action. I have never had gum disease again--and it actually causes some gum re-attachment! (I still have to floss, darn it!) Periostat is from the Tetracycline family although it does not work like an antibiotic. (Kind of sounds like the Minocycline for MS trial, huh?) If I could find the researcher who had this novel idea in the first place, I would kiss the ground s/he walks on!

I am convinced at least some cases of MS are bacteria driven. It's just a case of finding it..

I keep my fingers crossed everyday. My daughter is currently being treated for a strep infection and her improvements so far are alarming! I am still remaining conservative. Only "time" (and MRIs and EDSS scores) will convince me.

My prayers for all of you...
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bacteria

Postby gwa » Sun Sep 17, 2006 7:23 pm

It would not surprise me at all to find out that some little critters have been munching myelin in my brain and are under the radar screen.

The thing I remember about ulcers before the bacteria was discovered is that doctors would tell patients that "stress" was causing ulcers. Does this sound at all familiar??

A doctor in Bombay has recently discovered that a bacteria in chicken guts has been shown to cause obesity in the chickens. This was a random discovery.

He is now working at the University of Wisconsin at Madison trying to find the bacteria strain that may be responsible for human obesity. I read this last week on medicalnewstoday.com.

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Postby Chris55 » Mon Sep 18, 2006 6:12 am

And researchers recently found 3 bacteria in the digestive tract that, if allowed to enter the blood stream, could cause the symptoms of MS! I am convinced the "side effects" of MS are due to inflammation. Inflammation comes from infection--virus or bacteria.

I am so disenchanted with the current MS drugs in that they suppress the immune system and I just do not buy the autoimmunity theory. It is kind of a "catch-all" phrase these days. They also not only monopolize the market--they completely control it keeping other--possibly better--drugs from making it to market.

I hate to sound like a cynic..but alas, that is what I have become!
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CRABS

Postby gwa » Mon Sep 18, 2006 11:27 am

One of my neurologists from about a dozen years ago had previously been a researcher at a prestigious university. She did not want to put me on one of the crabs because she was convinced that the research was flawed on this particular drug.

Many of the posts I have read over the past 5 or 6 years are from people currently taking one of these meds. Their descriptions of how they used to have 4 or 5 relapses a year and then a few years after starting one of these crabs they would reduce their relapse rate by 50 %.

The thing is, I also started out with a relapse every 3 or 4 months for the first several years and then dropped to one or two a year for another decade without meds. Now I do not have relapses because I am SPMS, so I slowly get worse.

So I am not at all convinced that the drugs are as great as the companies want us to believe. A 33% rate is a failing grade in any school system.

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Postby mrhodes40 » Mon Sep 18, 2006 3:40 pm

One of my neurologists from about a dozen years ago had previously been a researcher at a prestigious university. She did not want to put me on one of the crabs because she was convinced that the research was flawed on this particular drug.



Interesting I also had my first neuro be a person who had been in research. his take was a little different in that he said MS is not and cannot be autoimmune because if it were you'd be able to cure it and or manage it by filtering the immune cells and that does not work , he said "people progress anyway"(the research he had been in on). He was of the opinion we simply had not come close to the cause yet, maybe a prion or some other tiny small organism we cannot culture was the actual culprit. He told me "symptom management is all we can get at this point in time". He had big sad eyes and was very depressing to be around as a patient. So I changed to a more upbeat one. And progressed anyway using every current strategy. :roll:

Interesting that these neuro's are out there, but they are very quiet. I do not often read of one standing up and telling everyone how poor today's care for MS patients is, htough once in a hwile you'll get a research paper like those done by CHaudhuri or Sriram that balk...
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technology not good

Postby gwa » Tue Sep 19, 2006 6:30 am

My neuro told me that she believed that the technology is still not available that would allow researchers to get to the root cause of MS.

The fact that we are dealing with areas of the body that cannot easily be biopsied is also a problem, in my opinion. I do think a prion, bacteria or virus is a very plausible culprit for the myelin destruction.
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Postby bromley » Tue Sep 19, 2006 7:04 am

GWA,

I think your neuro is right about technology. But the researchers have been doing autopsies of MS victims for some time and the UK has a tissue bank where MS sufferers donate CNS tissue which is then forwarded on to researchers.

I imagine that there are thousands of molecules to investigate, and better technology will allow these to be screened much more quickly.

Ian
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autopsies

Postby gwa » Tue Sep 19, 2006 7:18 am

Ian,

Autopsies are a definite help in research, but I believe it should be easier to spot culprits in the CNS when we are alive.

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Re: Interesting "bacteria" story...

Postby Minai » Tue Sep 19, 2006 9:29 am

Hi Chris,

Chris55 wrote:Repeating myself again, I am on medication for periodontal disease. In some of us, our bodies release too many enzymes in response to the inflammation caused by gum infection. This actually causes gum detachment. I take 2 very low doses a day of a drug, Periostat, which stops this action. I have never had gum disease again--and it actually causes some gum re-attachment! (I still have to floss, darn it!) Periostat is from the Tetracycline family although it does not work like an antibiotic. (Kind of sounds like the Minocycline for MS trial, huh?) If I could find the researcher who had this novel idea in the first place, I would kiss the ground s/he walks on!


Repeat yourself all you want :)

My MS symptoms, especially my latest relapse, have all coincided with peridontal disease. In fact, it was this link to Periostat that convinced me to start Doxycycline, recently:

http://www.mayoclinic.com/health/drug-i ... n/DR203724

Chris55 wrote:I am convinced at least some cases of MS are bacteria driven. It's just a case of finding it..


I'm certain some pathogen has something to do with it, in my situation.

I didn't even know I had peridontal disease, until recent wisdom tooth extraction. It had not shown up with either X-rays or ultrasonic cavitational scans. It was only discovered when my dentist made the incision to extract. Infection causing osteomyelitis of my jaw. He promplty sent one of the teeth to this lab for enzymatic testing:

http://www.altcorp.com/AffinityLaboratory/enzymes.htm

The results all came back as "severely toxic."

Chris55 wrote:I keep my fingers crossed everyday. My daughter is currently being treated for a strep infection and her improvements so far are alarming! I am still remaining conservative. Only "time" (and MRIs and EDSS scores) will convince me.


I wish you both the very best!!!

It's becoming very hard for me to remain "conservative," since the symptom relief I'm experiencing, since starting Doxycycline, is remarkable. No more walking with my cane, feeling like my body is strung together with coat hanger wire, and more. I just can't believe it, and neither can friends and family. Just hope that this will last!

Next on my list is to find a new neurologist who will monitor me with MRIs, rate my EDSS, but without pushing CRABS. Since, I haven't started Betaseron, my current neuro refuses to do so.

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Doxycycline

Postby Chris55 » Wed Sep 20, 2006 6:49 am

Your know it's funny...Doxycycline is the new generic form of Periostat. As I said, I have been taking Periostat for over 5 years. My druggist changed to Doxycycline as soon as it became available (much cheaper). Within a few months, I had severe--and I mean severe--periodontal disease! To me, it seemed to happen overnight. Gum boils, abcesses, canker sores, etc. I honestly never thought of gum disease as I was on medication! After about 3 weeks of this mess, it finally dawned on me it was the change in medication! I went back on Periostat and within 3 weeks was fine again. Unfortunately when I went to my oral surgeon I had developed pockets in just that short period of time! He also STRESSED to me that if it ever happened again to call him immediately. One note of importance: This medication acts as a blood thinner. Be sure to tell your doctor that if you ever have to have any kind of surgery. My doctor didn't even know this.

I also did not realize they will not do any heart surgery if a person has gum disease until all of the infection is cleared up.

Again, don't you think it is novel--ney, bizzarre--that a researcher would even think about a new direction for gum disease when everyone knows it is caused by plaque--and have known for eternity! Also of interest, I NEVER had any gum disease problems until I became a single parent with 3 small children and 3 jobs. My dentist kept saying: Single parent, single parent--meaning it was stress. Also started having sinus infections--something I had never had in my life!

This Periostat/enzyme interaction, etc. theory is why I have such an interest in Minocycline for MS. The very same theory could apply. The enzymes create inflammation--the Periostat--a very small dose of Tetracycline, stops this action. Does NOT work like an antibiotic.

As I said, I am such a cynic now when it comes to the MS medical community. I honestly feel Minocycline, now that it is in the hands of Copaxone, will never see the light of day! What an awful tragedy for all of you poor souls who, I believe, are being forced to live with this hidious and insidious disease!

Please do keep me posted on your progress and thanks for responding!
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Postby Anecdote » Wed Sep 20, 2006 7:19 am

Chris55 said:

Your know it's funny...Doxycycline is the new generic form of Periostat. As I said, I have been taking Periostat for over 5 years. My druggist changed to Doxycycline as soon as it became available (much cheaper).


Let's get our facts straight: Doxycycline has been available for over twenty years, although maybe not in the US, certainly in Europe. Periostat is a low dose doxycycline produced for periodontal disease. Doxycycline is very similar to minocycline but is more easily tolerated. If you want to take it for MS there is plenty of information about in both the Regimens section and the Antibiotics section.

Sarah
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.
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Postby Chris55 » Wed Sep 20, 2006 7:42 am

Perhaps Doxy was not available as a "replacement" for Periostat. I have state government insurance and they are buggers for cost! My Periostat costs over $40 a month because there was no generic form available--the key being the amount--20 mg. I believe 80 mg. was available in generic but I could only take 20 twice a day. When my script was changed to Doxy, it was only $7. Also, Periostat has been used for years, in liquid form, after oral surgeries.

All I know is when I was changed, my condition disintigrated so quickly and severely, I had problems I had never had before! As my surgeon and I say: Periostat for life!
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Postby Chris55 » Wed Sep 20, 2006 7:48 am

Not to be anal here, but one more point--Periostat is from the Tetracycline family. I believe Doxy and of course Mino are also from Tetra. I believe Tetracycline is the original form but don't quote me on that!

Bottom line, the "cyclines" seem to have very positive results for MS. As I have said, there may be strong similarities between the enzyme action that can cause gum disease/detachment and MS. The keys being faulty enzymes and inflammation. I am totally NOT convinced MS is an autoimmune disease. Just does not make sense to me.

We must all continue to share our trials and tribulations. Knowledge is definitely power!

My best to all of you--I truly love and care for each and every one of you. Chris
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Hey Minai---

Postby Chris55 » Wed Sep 20, 2006 8:37 am

---your second web reference on the enzyme research was really interesting! You know there is recent research that indicates heart disease could be caused by an infection/inflammation. The same for Diabetes. Maybe we should send our neuros to the teeth doctor--LOL!
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Postby Minai » Thu Sep 21, 2006 7:34 pm

Hi Chris,

Sorry so slow to respond, but in order to complete a major school project; I had to completely restrain myself from forum reading for two full days! :roll:

Chris55 wrote:All I know is when I was changed, my condition disintigrated so quickly and severely, I had problems I had never had before! As my surgeon and I say: Periostat for life!


The theory that I would be wondering about applying, if this had happened to me; is that the Doxy was causing a die-off reaction. That it was killing some sort of pathogen off, and your body was responding to this with these symptoms. I'm currently taking 200mg/day of Doxy.

I see Sarah has pointed you in the right direction to find out more. She really is the resident antibiotic/CPn pathogen expert. Which I came to realize after being initially intimidated by all of what she, and others, who don't buy into the MS autoimmunity theory, share, here :wink:

You're in good (no, great!) company :D

Minai
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