Daunted's antibiotic log

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

Postby Daunted » Wed Feb 16, 2005 7:01 am

Tman wrote:Daunted:
What quantities of Doxycycline/Rifampin/Amoxicillin do you take? When you pulse the Flagyl do you take all 4 antibiotics at the same time?

Thanks


It's 500mg of Amoxicillin, 100mg of Doxycycline, 300mg of Rifampin, alll 2x a day.

Then, once a month, add Flagyl 1000mg-1500mg (whatever you can tolerate) for 5 days- so you are taking all four antibiotics for those five days.
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Postby ropingheeler » Fri Mar 11, 2005 4:06 pm

hi daunted
just wanting to know what is this charcoal you talk about
and why do you also use amoxicillin also i dont think this is included in david weldons regem does it do something extra
thank you jeff
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Antibiotics

Postby Daunted » Sat Mar 12, 2005 11:34 am

ropingheeler wrote:hi daunted
just wanting to know what is this charcoal you talk about
and why do you also use amoxicillin also i dont think this is included in david weldons regem does it do something extra
thank you jeff


The activated charcoal capsules are used to absorb toxins (dead CPn, presumably) which may cause a porphyric reaction. If charcoal isn't applied, the CPn bacteria can be killed, and then on the way out of the digestive tract, unfortunately re-absorbed by the intestine, and thus cause a nasty reaction. I must admit I haven't had much of this even when I don't take the charcoal- I'm mostly worried about this "re-uptake" happening and having a negative effect on my liver, which can happen even without any symptoms.

Some people have a really nasty time with this, though, and some patients have reported taking astounding amounts of charcoal in order to minimize these effects. Some doctors are prescribing Questran for this purpose as well. I take either, depending on various factors, but I think the important thing is to at least take the charcoal at night, whether you feel you need it, or not.

You can get activated charcoal (cheaply) at Puritan's Pride.
It's $20 for 3 bottles so taking 15-20 pills a night isn't as expensive as it sounds.

The current protocol for CPn eradication from Vanderbilt, released by Dr. Charles Stratton for compassionate use, recommends the use of Amoxicllin, Zithromax (azithromycin), and Rifampin, with pulses of Flagyl (metronidazole). One can substitute Doxycycline for the Zithromax, which I have done. This lowers the cost substantially.

The reasons for the use of Amoxicillin are not clear to me but I think Sarah mentioned that it was to prevent the emergence of antibiotic resistance. Whatever the reason, it is really cheap and quite easy to take as compared to Rifampin and Metronidazole.
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Postby HappyDaddy » Sun Mar 13, 2005 1:46 am

Hi,

The use of Amoxicillin as a beta-lactam antibiotic might be explained by the following paper http://www.ncf-net.org/pdf/NCFForumF03.pdf.

Best wishes,
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zithromax?

Postby butterfly » Sat Apr 02, 2005 7:51 am

I see posted that the current protocol for CPn eradication from Vanderbilt, released by Dr. Charles Stratton for compassionate use, recommends the use of Amoxicllin, Zithromax (azithromycin), and Rifampin, with pulses of Flagyl (metronidazole).

I have a question about the use of azithromycin.....I thought I read in David Wheldon's paper that roxithromycin was the only drug in it's class to enter the CNS. Now I see azithromycin being used as well.

This is a very pertinent question for me because two months ago I was on zithromax for a sinus infection. The day I finished the z-pack I started in with an MS relapse. Could there be a connection? The relapse was corroborated with a MRI showing an enhancing lesion. I subsequently did three days of steroids. But it is all very complicated because the day the relapse started was also the day I discovered I was pregnant. It was only after a miscarriage that I underwent the MRI and the steroid treatment. Now my neuro wants me to go back on copoxone. I am torn about trying to get pregnant again starting copoxone or trying antibiodics. Now might be the time to say how deeply I appreciate the willingness and thoroughness with which you all are sharing your experiences and expertise.

Does anyone have an informed opinion as to whether or not the round of zithromax could have been involved in the relapse? If so, this might be further mounting evidence to consider antibiodics.

-- Christy
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Postby SarahLonglands » Sat Apr 02, 2005 10:43 am

Hello Christy,

Yes, roxithromycin is the only macrolide to get into the CNS in appreciable quantities, but for some reason it can't be prescribed in the States, so Vanderbilt use zithromax instead. David uses doxycycline and roxithromycin because they work in synergy with each other, avoiding the danger of resistance. This is the same idea with Vanderbilt using zithromax. It works for them so enough must get through the blood brain barrier for the synergic effect to work, and remember that they have been doing it for much longer. David was able to 'improve' upon this because we aren't quite so restricted in this country, but the main effect is probably that the pathogens are expunged that bit quicker.

As to whether zithromax might have been involved in your relapse, if you take the view that much MS is caused by a CPn infection, the short course of this drug would hopefully clear it from your sinuses but wouldn't do much to the CPn in your CNS. In fact the new infection of CPn would seem to make a relapse quite likely, but who can say?

As to your dilemma, well, copaxone will never stop the relapses, just lessen them. If you are aiming never to have another relapse, the antibiotics would seem to be what to go for. There is a slight danger period of three or four months after starting when if you got say, 'flu, this might trigger a relapse, but after that you should be OK. Since people often have very little in the way of symptoms whilst pregnant, a possibility would be to get the pregnancy over with and then straight away start the antibiotics. Then, after a couple of years you should be able to go without the top up doses to try for a second one.

Sarah
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Postby treez » Sat Apr 02, 2005 10:51 am

Just another idea............I think it is commonly believed an infection my trigger an exacerbation. A few months back I got the flu that was going around my community. Didn't take any meds, just let it run its course. I didn't have it near as bad as some. A few days later I had the worst relapse of symptoms I've ever had. Took several weeks to clear up.

Perhaps it was the sinus infection and not the antibiotics?? Not that there is an answer to be had.not that it really matters either huh?

Treez
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Re: zithromax?

Postby Daunted » Sat Apr 02, 2005 11:47 am

I see Sarah (owe you a message, so sorry!) and Treez have already chimed in with some very good responses, but let me add just a bit:

Below I have partially reproduced the abstract from the poster presentation reporting some of Vanderbilt's latest results. They used Rifampin and Zithromax, alone, for six months, in order to eradicate CPn which had been confirmed in the CNS via spinal tap.

In six months, 3 of the 4 patients had CSF free of CPn. And interestingly one of the placebo patients kicked the CPn infection without antibiotics (but, had no clinical changes).

The rifampin is a pretty hardcore antibiotic all by itself, keep in mind, having been used for years with tuberculosis and now, I am reading, in Lyme.

What I don't understand about any of this work is that they don't address the 'cryptic' form of CPn, which is killed by the Flagyl (metronidazole). Flagyl certainly gets into the CNS in necessary qualities- it gets everywhere from what I've read.

The science around the specifics of all this stuff is still evolving- and I wouldn't make a decision based on whether or not Zithromax provoked a worsening of symptoms.

I really think to give this a chance, do the whole protocol for six months and see what happens. That's Amoxicillin, Zithromax (or Doxycycline), Rifampin and, most importantly, the pulses of Flagyl. The response to Flagyl might give more clinical clues- I just did a 10-day pulse which resulted in some wicked symptoms, including muscle soreness and spasticity like I've never had.

Assuming you arein the U.S., of course, we know a doctor to send you to (if you can get to CA), or if you have a doctor of your own who may be open-minded, have him contact Dr. Charles Stratton at Vanderbilt University for his protocol.

If I can be of any help, please let me know.


[P06.095] A Pilot Study To Examine the Effect of Antibiotic Therapy on MRI Outcomes in Relapsing Remitting MS

Subramaniam Sriram, Song Yi-Yao, Harold Moses, Charles W. Stratton, Nashville, TN, Jerry Wolinsky, Houston, TX

OBJECTIVE: To examine the efficacy or oral anti-chlamydial antibiotic therapy in relapsing remitting MS

BACKGROUND: We have previously reported on the presence of C. pneumoniae in the CSF of MS patients but not controls. The relationship between the presence of the organism in the CNS and either the development or progression of MS is not known.

DESIGN/METHODS: Newly diagnosed MS patients, were selected to participate in the study if the presence of C. pneumoniae C. pneumoniae gene was seen in the CSF and they had an enhancing lesion on brain MRI. After a four-month run in phase of monthly MRI’s, patients were randomized to receive Rifampin (300mg twice daily) and Azithromycin 500mg every other day for 6 months or placebo. Patients continued to have monthly MRI’s for a total of 6 months and two additional scans, at month 12 and 14. Lumbar punctures were repeated at month 9 and 12. The primary outcome measure was a decrease in the number of enhancing lesions between patients receiving antibiotics when compared with those receiving placebo.

RESULTS: Due to problems with recruitment, the study was stopped after the eighth patient exited the study. Data on 4 patients on treatment and 4 on placebo were available for analysis. No significant difference in either the volume or number of enhancing lesion on brain MRI’s was seen between the two groups. There was a trend for an increase in the number and volume of lesions in the placebo group as compared with the treated group between month 9-14. A significant decrease in parenchymal brain fraction volume occurred in placebo treated patients from the pre to post treatment images (p<=0.001) that was not evident for those on antibiotics. Three of the four patients on antibiotic therapy, cleared the organism from the CSF by month 12 while in the placebo group one patient cleared the organism spontaneously. There were no clinical changes in either group during the period of study. There were no adverse events in patients receiving treatment.

CONCLUSIONS: The pilot study suggests that anti chlamydial antibiotics can clearC. pneumoniae from the CSF in 3 of 4 patients. The relative stability of brain parenchymal fraction in antibiotic treated cohort when compared with the placebo group, must be viewed with caution, due to the small number of patients in the study. These observations suggests that a larger study to examine the efficacy of antibiotic therapy in MS is warranted

Supported by: National MS Society
Category - MS and Related Diseases
SubCategory - Therapeutics
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more on butterfly

Postby butterfly » Sat Apr 02, 2005 2:05 pm

Thank you so much for your QUICK and thoughtful responses! I can't tell you how much I appreciate your compassion and expertise.

The odd thing about the zithromax was the twitching and other mild but unusual (for me) symptoms I had before the onset of the numbness, etc. Most of my relapse symptoms are sensory, although this one did involve some transient muscle fatigue and weakness.

Your comments about the flu are interesting. Around this time, my husband and son did come down with Influenza A, but as I recall my relapse started first. I never did get the flu, which is strange as even my daughter had a very mild version. But who knows, pregnancy...flu... zithromax...moon phases??? We'll never know exactly what triggered the MS.

As to pregnancy, I do have two beautiful children, and of course I must weigh my desire to have another child with my desire to stay as healthy as possible for my son and daughter. However pregnancy has been good to my MS in the past, which made it even more baffling when this relapse started.

One other thing, in January 04 I started in a trial with Avonex and Minocycline. I was sure the minoclyine was making me "sick" but the MS nurse said it was more likely the Avonex, though the nasty effects lasted well past the day and a half I expected with the Avonex. I felt anxious and in a fog and just generally awful. After 4 or 5 weeks I dropped out of the trial because I was having intolerable depression with the Avonex, but on my own I had stopped the minocycline well before that. I had not read anything about Cpn or antibiodics at that time. And per the MS nurse's input, I just wrote that whole miserable winter off to Avonex. In fact, in July 04 I decided on a whim to give the Minocycline another try (I had a three month's supply leftover in my cupboard). I had done some reading on it's neuroprotective qualitites. That week my balance was off kilter (not a usual MS symptom for me) and I was slightly light-headed all week. I attributed that to chiropractic treatments I had just started (for something unrelated to MS). I quite the minocyline after less than a week because I decided to try and get pregnant (i.e. had finally talked my husband into it).

So.....to try pregnancy or antibiodics? And of course I have copoxone waiting at the pharmacy. I live in a midwestern city in the US. I am reasonably certain I can find a GP to prescribe the antibiodic protocol. If not, I appreciate the information on the doctor in CA.

I apologize for the long rambling message. Perhaps this would be better located in "introductions." But, as always, your insights and input are always welcomed and appreciated. Thanks for all you do.

Sincerely, Christy
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Postby treez » Sun Apr 03, 2005 5:43 am

Christy,

Based on the timeline you presented in this thread, perhaps you weren't "pregnant enough". It sounds like you were just pregnant. Maybe the hormone levels hadn't changed enough to influence your MS. It is well know that "pregnancy is a very effective treatment for MS".

All you women out there with MS just have to figure out how to stay pregnant and you'll have this MS thing beaten!

:)


Treez

P.S. I too live in a midwest state. If you know of a Neuro or even PCP that is willing to go with the Antibiotic route, let me know!! No one around here is willing to get off mainstream proven treatments.
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Postby Daunted » Fri Apr 08, 2005 6:23 am

Here's a quick update:

Following my 2nd pulse of Flagyl I developed fasiculations and spasticity that was terrible. It has mostly lifted by now (this was over a month ago).

Around my 3rd pulse of Flagyl I developed myalgia (muscle pain) in my upper back, right shoulder, and neck. It's been constant for 2-3 weeks now. Many of the medications I am on have this as a potential side-effect (and I've also been put on a fluroqunolone short-term and they can cause tendinitis...), but it's also possibly a die-off reaction.

To attempt to treat that, I've been prescribed:
Benicar 40mg 4x a day
Pangestyme CN 2 capsules 15 min before each meal

I'm unclear about how this stuff works (or if it works, since I just started taking it). The Benicar supposedly reduces inflammation (like prednisone, but without the negative side effects) and the Pangestyme is supposed to create a reaction that wipes out the endotoxins when you digest food. But the specifics, I am clueless about.

Apparently some people are getting some relief from these meds, though.

I'm also taking Questran once a day, and taking 16-20 tablets of charcoal at night.

Perhaps someone can chime in with how and why this stuff works. I usually research this stuff thoroughly but this time of year is crazy for me as far as work-related stuff, and I'm very pressed for time.
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Postby SarahLonglands » Fri Apr 08, 2005 6:53 am

Hello Daunted,

Here's a quick semi reply before getting back to work: I also developed a severe myalgia, down my right arm and across my shoulders after the third dose of metronidizole, which David put down to die-off. Someone else I know developed frightful fasciculations, worst in the upper body, but also in both legs, and he wasn't taking it for MS!

Not much help, though, because I just O-Ded with nurofen, which helped little, but only a little. I do know some people who have taken benicar to good effect. If nobody else chimes in I will try to find out a bit more for you in a day or so.

The charcoal is supposed to mop up the toxins produced by the die-off, though. I suppose the only way to tell if it works is to stop taking it for a few days: not something you can really risk at the moment.

Take care,

Sarah
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Postby Daunted » Fri Apr 08, 2005 7:02 am

Sarah,

Thanks and any information you come across regarding the pangestyme, I would appreciate. Dr. Powell seems to know his biochem pretty darn well and had a great explanation when I spoke to him, but I lost it! I've been having brain fog since this latest pulse of Metro, also...a brand-new and very scary symptom I haven't dealt with before.

My take on the charcoal is that it is modestly effective; better to take it than not, but also far from ideal. I'm reassured to realize that you experienced myalgia even while taking the charcoal!

The fasiculations I experienced were identifical to what you described in the patient you are referrring to, I believe. Looked like worms were under my skin or something. And in my chest and gut...can you say "Scared of ALS????". They resolved in a few short days though.

The myalgia is persistent...how long did yours last?
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Postby SarahLonglands » Fri Apr 08, 2005 7:45 am

Daunted,

Quick reply before I get stuck here all day!

That's right, worms under the skin, very weird to look at! I think you can say "Scared of ALS?????" because this person was taking it for 'reasons of the heart' which got him really worried.

The myalgia was at its worst for about three weeks, but lasted in a more subdued state for a long time. Um, thinking back, about six months, but getting less with time. It was not yet at its worst when I had my second MRI. I don't know how I managed to keep still, even so, but the result helped me through the worst period.

Do you think your brain fog might be partly due to the stress of this time of the year for you? :?

I'll find out some info on pangestyme and so on and also send you some info on chlorella: the toxin remover par excellence, I have discovered.

Sarah
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Postby Daunted » Fri Apr 08, 2005 2:05 pm

Sarah,

Thanks for the response and I would appreciate any further information.

Right now I am going full-court press on endotoxins by taking Benicar, pangestyme with every meal, Questran 2x a day and 5200mg of activated charcoal every night. We'll see if that has an effect.
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