Chlamydia pneumoniae: the possible cause of MS?

A forum for the discussion of antibiotics as a potential therapy for MS

Postby karrie » Wed Sep 29, 2004 12:36 pm

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Postby SarahLonglands » Wed Sep 29, 2004 3:12 pm

Karrie,

What you were experiencing sounded to me very like the Herxheimer reaction, which just shows that you did have an infection, nothing more. Yes, its easy to say that, sorry. Its a jolly difficult thing to go through and now over a year on, I can tend to forget that, because I feel so much better. You have to remember here that C Pn is a primary respiratory infection. Quite honestly I don't remember much of the first few weeks of taking antibiotics, because I was so tired and slept much of the time, but I do remember a constant low level respiratory thing and feeling very asthmatic. Also despite the probiotics, I had dreadful trouble with my bowels.

It is not an easy thing, to know that you are likely to feel worse before you start feeling the improvements.

Sarah
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Thanks Much Karrie

Postby treez » Wed Sep 29, 2004 5:02 pm

Karrie,

I really appreciate your input! My apt. is Thurs. 9/30 so tonight I'm trying to get all my info together to take. I'm most flattered/impressed that you'd join this site just to help because of other posts you've read.

You're right, you do have an open minded neuro. being willing to try the tetracycline route.

What country are you from? I'd appreciate some more specific details if you don't mind. Feel free to Private Message me if you'd prefer. Anecdote has an entire treatment regime posted elsewhere on this site for anyone interested. Does it work........?? Anecdote is kinda biased because she's doing fabulous. Remember, everyone is different! I have to keep reminding myself of this fact too.

Again Karrie, thank you for the thoughtfulness and concern.

To all, I'll post the outcome and details when available

Treez
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Postby Byron » Thu Sep 30, 2004 8:03 am

Karrie, it might be worthwhile to keep in mind the possibility that you are allergic to Minocycline. It is a very safe drug: tens of millions of people have safely taken Minocycline - I have been taking it myself for several weeks now. Still, it is a drug.

I am allergic to garlic. The latter reaction you describe with regards to Minocycline is exactly the reaction I have when I eat any garlic (it's much more difficult to avoid than one might think since it shows up in all sorts of foods, even garlic bread in an Italian restaurant.) I get the same reaction: can't breath, throat closing up, pain in the upper chest, wheezing, etc.

The earlier reaction does sound like Herxheimer reaction. When I first started on Minocycline, although I am [theoretically] healthy, I also got dizzy for a few days. Eventually, it resolved itself and now I don't notice anything.

There are many bacteriostatic antiobiotics other than the tetracyclines which might be effective if one is allergic to a tetracycline (Minocycline being one of them, of course.) If you are allergic to one tetracycline, it's probably not worth taking chances, you are probably allergic to all tetracyclines.

I am one of those people who were "convinced en route" so to speak, of the bacterial infection theory about MS. When my girlfriend first started taking Minocycline, I was hoping for a gradual improvement due to its neuroprotective properties. However, two days after taking the Minocycline, she got much worse, and about five days after that, she got much better; her fatigue was gone, she slept soundly at night, etc. To me, this doesn't look like the immense improvement could have been caused by neuroprotectiveness, although I am sure it helped.
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Postby SarahLonglands » Thu Sep 30, 2004 10:38 am

Karrie,

I have been thinking about your reaction to minocycline a lot today and have just ascertained the following from my a consultant microbiologist who is responsible for prescribing the antibiotics used in the local hospital:

Allergic reactions are very rare with tetracyclines, unlike, say penicillin and would certainly not take five or six days to show themselves.

Herxheimer reactions, if one has an infection are very common. They can take different forms with different people.

Although one might have been prescribed two 100 mg tablets a day, it is possible to start on one a day or even one every two days and build up to the normal dose.


I guess your open minded neuro. was thinking more of the immunomodulatory powers of minocycline rather than its use in stalling C Pn or any other infection. However, if the infection is there, most people will get a Herxheimer reaction when starting on a tetracycline.

Neurologists really need to work in a more multidisciplinary environment and it is a shame if you have been totally put off the antibiotic regime.

Sarah
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Postby karrie » Thu Sep 30, 2004 12:06 pm

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For sarah

Postby karrie » Thu Sep 30, 2004 12:24 pm

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Postby SarahLonglands » Fri Oct 01, 2004 3:08 am

Karrie,

You are right, I can be a bit too enthusiastic since this worked so well for me. What happened to you must have been very frightening both to you and your husband.

Statins are a good alternative if you really can't stomach tetracyclines although as you say, it might be six months before you feel any improvement.

What should be borne in mind by everyone is the fact that these guidelines on taking tetracyclines were written before persistent C Pn infection really became recognized, therefore a lot of the possible side effects noted are probably caused by the toxins produced when this infection is attacked, probably unwittingly in a lot of cases. (This thought came from my husband, not me.) The fact that you took a first generation tetracycline for acne with no adverse effects would seem to bear this out, if you then subsequently acquired a persistent C Pn infection. Who knows? This is all new stuff. I can see why you are frightened of trying a tetracycline again, though. Luckily these sort of reactions are very rare. So good luck with the statins. Perhaps you will let everyone know how you progress?

Sarah
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Postby Byron » Fri Oct 01, 2004 12:06 pm

One of the specific warnings about Minocycline is to take it with a full glass of water and to not lie down after taking it for at least half an hour(although it doesn't sound like Karrie did that.) The reason is that the capsule might get stuck in the throat. If it does, it will eat through the gullet lining.

It seems unlikely that something would get stuck in the throat; surely someone would recognize if a pill didn't go down right, but the reason I bring it up is because seems like a good explaination of what might have happened. Such a situation is life-threatening, in fact it is strongly recommended to go to the emergency room in such a case, which certainly seems to fit the seriousness of what Karrie was experiencing.
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Postby karrie » Sat Oct 02, 2004 8:39 am

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Pinched from the regimens section!

Postby SarahLonglands » Wed Oct 06, 2004 2:34 am

I have taken this from Smayfield's entry in the regimens section because I thought it relevant and maybe not everyone reads that section.

I too have also decided to give antibiotics a try. I actually made my decision over a month ago, but could not find a cooperative doctor until recently. He wanted to test me for CPN but before we could do the test I came down with a bad urinary tract infection. Which is probably a good thing, since apparently you can test negative for CPN and still have an infection in the cns, and this just jumpstarted my antibiotic therapy.

So here is a rundown of what has happened so far. Dr. wrote a prescription for ciprofloaxin 500 mg twice daily for U.T.I. Ciprofloaxin crosses blood brain barrier well and is effective against CPN. I took it that evening and was up all night with the sensation that I could not breath, since I experience this from time to time anyway, I thought maybe it was just a fluke. The next morning I got up to go to work and took my second dose. Within a few hours the same thing, this time only worse. Very similar to what Karrie experienced and has explained elsewhere. I also could see myself having to take an ambulance ride to the hospital. I thought I was having a reaction to the cipro so I called the doctor and they wrote another prescription for doxycycline 100 mg twice daily. I've been taking it for about 3 weeks now.

The first couple of weeks on doxycycline I didn't notice any real change and I didn't experience any breathing difficulties. I had been wondering if what I had felt on the ciprofloaxin was mabe they herxheimer reaction. From the research I had done ciprofloaxin quickly spikes in blood concentration where as the tetracycline antibiotics are more of a slow build. So earlier this week I decided to use myself a guinea pig and instead of spacing my doses of doxycycline I took 200 mg at the same time in hopes of getting a quicker spike in blood concentration and duplicating the effects I had on the ciprofloaxin. I did indeed get the same sensations of not being able to breath, although not quite as intense. In my mind this tells me that in all likelihood what I experienced was the herxheimer reaction. I'm going in to see the doctor this week to convince him to continue me on antibiotics, if he will not go along I'm going to go it alone. Ill keep you all up to date on how it's going.
Steve


Sarah :wink:
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Postby Byron » Wed Oct 06, 2004 6:34 am

These are not easy medicines to take, although it increasingly appears that the reason is that there's a large amount of bacteria that die and cause adverse reactions.

Karrie, I am very sorry that you are offended, but I do have the right to try to figure out what happened, as does everyone else. This is how we try to figure out things: we put forth hypothesis and then see if they can be proved or disproved. This is far too important to too many people to allow it to be blocked by people deciding to get offended about something. The antibiotics regimen, taken properly, does seem to be a cure for MS but we are in the uncomfortable position of having a small amount of extremely promising data. We need to build up the amount of information we have so that we know more about the possibilities, both good and bad. The only way we are going to do it, until someone puts forth the money for a full-scale trial, is to share anecdotal information.
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Postby treez » Wed Oct 06, 2004 8:07 am

Karrie,

I for one greatly appreciate your time to join and post re: antibiotic experiences. I would still be willing to try the antibotic route, but thanks to you, I'd be a little more aware and cautious of potential reactions.

Unfortunately, Thurs. 9/30 I had an appt. with Univ. of Mich. Neurology clinic. I actually met with the head of the dept. and a resident. They reviewed all films (MRI's), testing including lumbar P. results, blood work, and put me through a lengthy neuro. exam, which resulted in a disability rating of "0". They are not willing to change my current treatment (Betaseron). I also took much literature regarding antibiotic therapy from this sites extensive posts(Dr. Wheldon in particular), and much other literature I've found elsewhere on the net.

They weren't willing to review it, they wouldn't take it for later reading,, and I was made to feel like...just another ridiculous " hope for a miraculous cure".

For crying out loud! READ IT!

Now what do I do? I even pointed out that I would be willing to take part in an antibiotic study, if such a thing would be in the planning stage. Keep in mind U. of M. is a 2 hour drive for me. No big deal !

Soooooooooo.................I'm right back where I was.

Suggestions are very welcome..........Support would be treasured.

A very disappointed, depressed.....................Treez :cry:
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Postby Byron » Wed Oct 06, 2004 9:10 am

Treez, that was basically what my girlfriend experienced. We bought antibiotics online anyway and she took them. After a serious Herxheimer response, she's much better, almost to the point of being cured. A few more months and hopefully she won't have to take anything.

As I mentioned in an earlier post, we have a small amount of extremely promising data. It seems to be a cure. Emphasis on the "seems." No one at this point is able to predict what will happen if you take antibiotics.

In general, Minocycline, specifically, is a very safe medicine to take. However, because the standard "treatment" for MS is to convince the immune system to not fight, the bacteria that seems (again emphasis on "seems") to be a significant cause of MS takes happy residence. Hence, even though Minocycline itself is a safe drug, the large amount of bacteria for people with MS cause very strong Herxheimer responses. If you are lucky and MS hasn't progressed very far, your response will be not be as strong, but then, you don't really need an antibiotic nearly as much, either.

If I were you, I would try to convince a GP to give me a prescription for Minocycline, and failing that, buy it myself online. But, I am not you. To me, the lack of more data is also a matter of great concern and worry. And someone is going to have to be the in the first few. This isn't theory for anyone nor an issue that is specific to MS. As we all grow older, we are all going to have all sorts of different diseases, and whether or not to be in the first few will always be a question.
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Postby karrie » Wed Oct 06, 2004 12:19 pm

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