Another new adventure - Natgas's antibiotic log

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

Postby LifeontheIce » Thu Dec 08, 2005 7:10 am

Roy, I keep teasing you. Actually I would be pleased, if you got ahead of me with your health. B.
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Postby natgas » Thu Dec 08, 2005 8:50 am

Barbara

Is it snowing up around the windy city yet? We are expecting 3-5 inches before the day is gone here in SW Indiana. I know that's just a dusting up your way.

I know your kidding, keeps thing interesting though. I'm just trying to fine tune things a bit.

Day 7/21 on flagyl, it's just another day, well almost.

Roy
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Flagyl

Postby Katman » Thu Dec 08, 2005 12:29 pm

Hi Roy

How do you do all that Flagyl? It has always put me in such a state that I was not sure I would be back. Raven said on CPn Help that there seems to be a difference between the brain and muscle tissues victims. Since I am getting a little smarter each day and the Flagyl affected me so much less this time, I think she may have a very good point. If so, I'm sorry you have to be so aware and were unable to spend the bad time in (un)blissful unawareness.

I keep my 15 pm pills in 15 little bottles in a place other than am pills and remove the bottles 1 at a time, putting the pill into a small bowl. When I have all of them in the bowl, I replace all the bottles. Some look so very much like others that I can't trust myself unless I have a fairly infallible system. My "daily drigs" (Doxy and Rifampin) are always in a tiny bottle, filled each am, in my pocket.

Stay well, get better, enjoy the snow, and I hope to see you in June or July.

Rica
Last edited by Katman on Sat Dec 10, 2005 9:05 am, edited 1 time in total.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby natgas » Thu Dec 08, 2005 5:53 pm

Hello Rica,

The first time I was out of it. This time I was the first 3 or 4 days but not to bad now.

That is the first I've heard about the brain and muscle tissues deal. Does the ABX work on either?

We have about 5" of the white stuff, but it is over with now. These folks around here forget how to drive on it.

Roy
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Brain and muscle

Postby Katman » Thu Dec 08, 2005 6:39 pm

Ravem was speculating. She wondered if some of us have more infection in the brain and some of us in other tissue. I don't know, but yes, some abx crosses the BBB (blood brain barrier) I believe Rifampin does this. One of the drs. on this site can speak better to that. I was greatly affected mentally by Flagyl and some people, like you, don't seem to be affected much in the head
but are instead in pain physically And there are others who have mentioned this.

It was very thoughtless of me not to ask about your wife. How is she? Is she responding to abx?

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby natgas » Thu Dec 08, 2005 7:06 pm

Hello Rica,

Thanks for asking. She is on doxy/roxy and seems to be doing alright with it. Her tremor in right hand has gotten alot better, she can eat corn / peas again without throwing it everywhere LOL.

Roy
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ABX & BB Barrier

Postby Jimk » Thu Dec 08, 2005 8:06 pm

Hi Guys-
Glad to hear you are managing, Roy, and delighted that your wife isn't throwing peas and corn at you, except I assume when she's aiming to!

One of the links on the links page (http://home.earthlink.net/~robert016/antibio.htm) on this thread has this info posted on abx which cross the blood brain barrier or not. Only Roxithromycin crosses the BBB to a sufficient degree, azith does not. Doxy and Rifampin are clearly the ones on the major existing protocols available in the USA which will get into the brain.
Flagyl gets into the brain readily (it's less clear in the chart below) from all the studies I've seen (see for example http://www.lymenet.de/literatur/flgylcsf.htm).

In order to kill pathogens, there must be at least a certain minimum concentration of antibiotic--
MIC=minimum inhibitory concentration.
MBC=minimum bactericidal concentration-the killing concentration.
**********************

Table of Antibiotic properties in CSF-For Those That Cross BBB Easily
(units: micrograms/milliliter)
Pathogen is C. pneumoniae
The way to read this table is to look for MBC values that are less than the CSF concentration. Those antibiotics will be effective against C.pneumoniae. Those MBC values are underlined. More data are needed to complete the table, and will be added as found.


Ofloxacin CSF level=.9-4; at dose of 200 mg, b.i.d.; 50% active isomer MBC=.5,
Rifampin CSF level=.4-1; 600 mg/day; MBC=.005-.1
Moxifloxacin CSF level= >.125; with dose ----- MBC=.01-.125
Doxycycline CSF level =.5-2.6; with dose of 200 mg/day; MBC= .06-.5;
Isoniazid CSF level= 2.4-4; at dose of 300 mg/day; MBC=?
Metronidazole(flagyl) CSF level= >10xMIC; at dose of 2.4 mg/kg/day
Cotrimoxazole (Bactrim)CSF level=---, with dose=---; MBC=---
Sparfloxacin CSF level=---, with dose=---; MBC=.063
Grepafloxacin CSF level=---,with dose=---; MIC= MBC=.06-.12
Levofloxacin- at least as effective as Ofloxacin;100% levo (active) isomer MBC= < .5
Minocycline CSF level=.65-.83;at dose of 400 mg/day; MBC= .25
***************************************************************************
Properties of Antibiotics which cross the BBB less well.
Erythromycin CSF level=?; MBC=.25-1.0 or .05-.1
Amoxicillin CSF level=.35; at dose of 33mg/kg, or 1600 mg/day for 110 pound person
***********************************************************************
***********************************************************************
Antibiotics effective against C pneumoniae but which do NOT cross the BBB
-except possibly, minutely. Thus they cannot effectively act on C pneumoniae in CSF, but may be effective for CP in the rest of the body. thus they can be of use in multiple antibiotic treatment regimen.

Roxythromycin-Macrolide-used in multicenter trials in Germany, to start in 2000. Data not available. Note: this data is dated, there have been other studies showing good BBB crossing by Roxy- Jimk
Biaxin (clarithromycin)-MacrolideCSF level=.02, at single dose of 500 mg; MBC=.125or .03
Azithromycin-(Zithromax)-Macrolide MBC= .25-1;or .05; CSF level low.--in VU study
Vancomycin, a glycopeptide with M.W. of 1485.7, a very large molecule.
[/b]
Last edited by Jimk on Fri Dec 09, 2005 5:27 am, edited 1 time in total.
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Postby LifeontheIce » Thu Dec 08, 2005 10:48 pm

Roy, I spent over two hours in the traffic today on the way back from work. It would be much longer if I took Central Ave ( extention of the Midway Airport today)

Jim, I have to protest about the BBB permeability for roxithromycin. I chose it because it easily crosses it and in addition works synergistically with the doxycycline. The only thing that makes me uneasy about Roxi is that I am due for the baboon syndrome any day.
Barbara


http://www.davidwheldon.co.uk/ms-treatment.html

Why doxycycline and roxithromycin (or azithromycin)?

Both are oral, both are active against Chlamydia pneumoniae, both are relatively inexpensive. They are relatively risk-free. They act synergically against test strains of the organism; giving both together would be the equivalent of giving a four-fold increase of each drug were it to be given alone. The drugs work on different steps in the bacterial protein synthesis pathway. Combination therapy reduces the chance of the emergence of resistance. Both drugs pass into the brain. Both reach good levels inside cells. This is very important. Both are well tolerated. Azithromycin is an alternative to roxithromycin. They deplete the organisms slowly: this is very important, as the release of bacterial endotoxins should not be sudden.

Rifampicin may also be considered. It, too, is synergic with doxycycline, penetrates the brain and is active intracellularly. It is not suitable for intermittent use. It is highly active, and, in patients with a large bacterial load, it may give rise to intense reactions.
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I agree!

Postby Jimk » Fri Dec 09, 2005 5:23 am

Barbara-
I have to agree with your disagreement with me!
Actually, I corrected this almost immediately, you might have gotten an email or viewing of my original post before I corrected it. I've added that caveat to the posting above.
Yes, Roxy does cross the BBB, as David points out it is the only macrolide to do so. The research I've scanned though is mixed. There are varied reports about the actual concentrations.
However, it's practice that tells all, and those taking Roxy have distinct reports of it affecting CNS infection and functioning. Hope I didn't add confustion to the whole protocol thing!
Jim
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Postby Anecdote » Fri Dec 09, 2005 5:37 am

Jim and everyone else,

I have a paper somewhere, as does David, about the fact that it has recently been shown that azithromycin also reaches the brain tissue, although it is not found in the CSF. This has now been shown by biopsy, so although when Barbara and I started, we took roxithromycin, azithromycin is also as effective. I can't find the paper for the moment and I must dash because acrylic paints dry so fast compared to what I am used to! I'll look later.

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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Paint, Paint!

Postby Jimk » Fri Dec 09, 2005 6:06 am

Paint while the acrylic is wet, an ancient saying.

This reminds me that it is time to do an update on the abx/BBB list. I think a page on CPn Help.org would be in order. Lot's happened since that old link posted. Any takers?
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Postby natgas » Fri Dec 09, 2005 2:56 pm

The beginning of my adventure into life with PPMS.

I was going to Vandy originally w/ my wife as she had symptoms that appeared to relate to MS,
I started doing a lot of research into MS trying to find all that I could about MS. Well what I was finding related so much w/ what I was experiencing too.

I set out to get a referral with a local Neurologist in a fairly large metropolitan south of where I live. This guy I believe had yet to complete his course at Sears. He scheduled me for a lumber puncture (LP) to be performed at his office. Well the day of the LP came around and I went in to have it done. This guy stuck me not once but three times and misses it all three times. Now mind you my wife was the nurse after the third time he got a little miffed and left the room. My wife had to clean up the mess that he left.

I than went to a local hospital to have the LP performed using a scope, this went as planned the 1st time. The lumber fluid was sent in to have test done. I had an appointment in a week or so and went back to the Nero, went in and he had the results but he had neglected to order some of the tests that most would have performed as standard.

Well you probably have already guessed it, I had to go back to the local hospital to have another LP done to get some more fluid to run the balance of the test that he forgot to order the first time around.

After another couple weeks I had another appoint with the novice. It was decide that I needed to have an MRI done. This was scheduled at my local hospital. Well after an x-ray it showed that there was a piece of metal in one of my eyes. This set off yet another adventure, another doctor and an appointment with an ophthalmologist to try to find and remove the metal.

Well during this time my PCP had scheduled an appointment with an ear nose and throat Doc to test and see if this may be the root of the problem. Well this went on for a couple of weeks and it was decided that wasn’t the problem.

During this time the ophthalmologist decided that the spec of metal was in my face and not my eye and that I could go ahead w/ the MRI.

Had the MRI done at the local hospital and took the film back to the novice Nero and he thought that it may be MS. That was my last visit w/ that terrorist. I found another local Nero @ the hospital complex where I had the LP’s done and got a referral to him. The next appointment I could get in with was another 3 months away.

Well my wife had another appointment with Dr. Moses @ Vanderbilt. I decide to take my MRI films along with us when we went to her appointment. After numerous tests and MRI's it was decided that her's was not MS. I ask Dr. Moses if he would review the films which he did and determined that I had Primary Progressive Multiple Scolisis but the MRI’s were of poor quality and I needed to have them redone with a better quality machine with a larger magnet.

That was her last visit and it was my first as Dr. Moses told us that he couldn't help her as she was a mystery but he may be able to help me. That was in mid 02, the next 16 or so months was spent trying to get LP's, MRI's and such done.

In late 03 Vandy's Doc's had decided that I had MS. I already knew that somehow, I became my own physician in that 16 months or so but that's another story in it's self. They said the Rituxan trial was going to start very soon, remind you that was in 03. Well the trial finally got approve by Vandy's board in December of 04 and the first infusions were March 05. I was one of the first to get the infusions. I had started a post on MS World under New Treatments titled Rituxan and meet several folks that were in the trial and we exchanged experience and it appeared that we we’re on the drug and not placebo. After a few months it appeared that this wasn't going to be the wonder drug and I start looking once again for a treatment that made some sense. I never believe that this is your body attacking it's self but was caused by something we were exposed to, environment or something. I decided to take all this back under my control as what I've tried so far hasn't had any effect and the MS was progressing way to fast.

I was working with an industrial micro biologist in Austrialia on an oilfield project and ask him to do a some research into it. He came upon Dr. Weldon's work and we both persued it further. This all lead me to MSWorld's and this is MS's sites and than right back to Vandy. That is about the time I met Life on Ice @ MS World.

At this that time, mid-August 05 I was on Dr. David Weldon’s protocol. I have had several conversations w/ Dr. Sriram @ Vandy about the antibiotics but he seems to come under such scrutiny that everything has to be very well documented. We have spoke about Sarah and her amazing recovery and several other folks that have literally recovered from being an invalid in a wheelchair to back walking and carrying on a much more normal life.

I have a local Nero that knows the ultimate outcome as well and he'll write the scripts for about anything that I would like to try.

Dr. Sriram would like to work w/ me on Vandy’s abx treatment but we have a few hoop's that we have to jump threw. In the meantime I decide to start Dr. Weldon’s protocol. I've yet to speak w/ Dr. Stratton. The last time I was @ Vandy was to get the LP done as Dr. Moses had a case of mild food poisoning and Dr. Sriram was covering for both and we didn't get to speak with either much but will in the next week or so.

Mid- November – Swapped over to Dr. Sriram’s protocol, we’ll see how this goes.

Roy
Last edited by natgas on Sat Dec 10, 2005 8:22 am, edited 2 times in total.
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Postby LifeontheIce » Fri Dec 09, 2005 6:34 pm

Roy, this is the first time you have written little more about yourself.
Does it mean that you feel better?
If you compare yourself now and before the treatment, can you see any positive difference yet, except for less brain fog?
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Postby Anecdote » Sat Dec 10, 2005 4:12 am

I was wondering this as well. :? I also think you should post the same longer length update as a blog over on http://www.CPn Help.org because I think it will encourage lots of people. It is also very funny! I posted it to David last night and I could hear him laughing across the hallway.

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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Yes, post it as a blog

Postby Jimk » Sat Dec 10, 2005 5:24 am

Roy,
I echo Sarah's request. I bow to you for being able to tell such a horribly time consuming, misleading, difficult medical quest with so much humor and irony. Your persistence in paying attention to your intuition that something else is going on here is a wonderful model for those who go from one doctor to another, yet know somewhere deep inside that their real problem isn't getting attended to. Please post this as a blog at www.CPn Help.org
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