Also Trying Antibiotics

Tell us what you are using to treat your MS-- and how you are doing.

Also Trying Antibiotics

Postby SMAYFIELD » Mon Oct 04, 2004 11:19 am

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
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Postby treez » Mon Oct 04, 2004 1:21 pm

Thanks from all on yet another person willing to give the antibiotic route a try.

You speak of "going it alone", how does one from the "States" go it alone without prescription? Am I just uninformed??

Regular updates will be greatly appreciated.....by all.....I'm sure

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Postby SMAYFIELD » Mon Oct 04, 2004 2:15 pm

You can legally order medicine from overseas without a prescription as long as it's for personal use only. This is how I currently get my LDN.
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Postby Anecdote » Mon Oct 04, 2004 2:45 pm

:lol: :lol: :lol: :lol: :lol: :lol: :lol:

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Also trying Minocycline

Postby slm214 » Tue Oct 05, 2004 9:28 pm

I have been on 100 mg Minocycline twice daily since June. Had major herx reaction the first couple weeks. Also take Cat's Claw. Want to incorporate the Flagyl as well. I am very sure to take the Minocin branded product, as it is pelletized, not the generic. Minocin is made by Wyeth. It is supposed to be more bioavailable. I cannot tell if it is really doing anything; only time and my future MRIs will tell. I am zero on the EDSS scale at this point, and probably have primary progressive.
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Postby Scaggs » Wed Oct 06, 2004 4:10 am

I too am trying doxycycline 200mg per day, after reading David Wheldon's compelling arguments about C-Pn and MS. Whilst my Neurologist and GP have not (yet) given me a positive dx for MS, I wouldn't want to post any adverse comments against using antibiotics in case my condition turns out to be another Neurological disease unrelated to MS, and may put people off from trying it.

I also knew my GP would not be willing to prescribe me antibiotics at this stage in time, so I told her I was going to Thailand and wanted 6 months supply of anti-malarial tablets (ie doxycycline). However, I wouldn't recommend this approach, as you really need a GP or Neuro who will support you all the way, and prescribe Metronidazole at a later stage.

I fully support the need for a list of GP's who will prescribe antibiotics for this treatment.
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Postby SMAYFIELD » Tue Dec 28, 2004 12:33 pm

It has been a while since my last post, so I guess it is time for an update. I was on Doxycycline for 1 month but could not convince my Dr. to refill my prescription. I ultimately ended up ordering the full regimen as outlined by David Wheldon from over seas. I've been on it since the 17th of November. I thought that I had posted my improvements in my first post, but after reviewing it I guess I did not. So here it is.

The first month of Cipro/Doxycycline: During about the third week on the antibiotics, the constant ringing in my ears stopped and the annoying lump in my throat finally went away.

During the month or so off the antibiotics: Ears started ringing again and the lump in my throat came back.

Since Nov. 17th. Ears have stopped ringing. The lump in the throat comes and goes. I finally have the stamina to work a full day at work again and even some overtime. The weakness in my left shoulder has improved. I feel generally better overall. I feel like myself again most of the time. I don't want to give the impression that I feel great all the time because I don't. But When I feel bad, it is for hours and not days. But it's still early and I haven't started the pulses of Metronidizole yet, so we will see.

I realize that I must appear rather careless or stupid, taking prescription drugs now without being under the care of a physician. I guess I can live with that as long as I can enjoy quality time with the wife and kids. I don't want anybody to think that I condone one treating himself/herself without the care of a doctor, that is not why I am posting this. I just think when something works you should share you experience so others can be informed. Just as Sarah has done. I guess everybody has to look at risk vs. benifit for their situation.
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Postby Anecdote » Wed Dec 29, 2004 5:17 am

.
Hello Steve,

Of course it is ideally better to be under the care of a physician, but I guess there are many people who are not. Take a look at Notdoneyet's posting in the regimens section.

Things seem to be very different in the States compared to our British system and many more doctors are not willing to stick their necks out. Well, that is the case here as well, but less so. Also, as I have learnt over the last few months, many people don't have medical insurance, so what are they supposed to do? Not a lot of chance of getting it after an MS diagnosis, I would have thought. I am so very lucky in this respect, having David as a husband, and having a GP who will prescribe whatever I ask for. Also we have the NHS, of course, so aren't reliant upon insurance.

For these reasons I can't call you careless or stupid. Since you have your wife and children to think of, I can't imagine that you are would do anything completely foolhardy. You know that if you don't have a physician looking over you, you do at least have someone to whom you can write.

Best wishes for when you start the metronidizole, but don't rush it: hopefully you will sail through it, but it even makes my GP want to throw up. :(

Sarah

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also trying antibiotics

Postby Notdoneyet » Wed Dec 29, 2004 12:16 pm

I deleted this message. It was somewhat rude and probably ill informed . Apologies.

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