Daunted's antibiotic log

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

Postby gibbledygook » Mon Jun 20, 2005 7:39 am

Hi Eric,

I have been taking minocycline (200mg = 100 mg in morning with food, 100mg with food at night) since November 2004 after reading successful trial data on it.
I then read the Wheldon regime and in February added roxithromycin 150mg twice daily to the daily minocycline. Doxicycline is a substitute for minocycline as some people are not able to cope with the latter.
Every 2 weeks I try to do 7 days of metronidazole (400mg 3 times a day). However I have only managed a max of 6 days on the metronidazole (otherwise known as flagyl).
I take the minocycline and roxithromycin at the same time as the metronidazole except one metronidazole alone at lunchtime. I always try to take the pills with food as otherwise you can end up feeling a bit nauseous.
The following link may be of use to you.
www.davidwheldon.co.uk/ms-treatment.html
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Postby Daunted » Mon Jun 20, 2005 2:58 pm

There a few different protocols. Each med (or combination) serves a different purpose:

1. Kill active CPn:
Minocycline 100mg 2x a Day + Zithomax 250mg Mon, Wed, Fri

2. Kill 'cryptic form' CPn
Flagyl (1000mg per day, 500mg 2x a day in America; in Europe thay have 400mg pills and go 3x a day, at 1200mg) or pulsed (5 days per month is a conservative schedule; every other week is my current schedule)

3. Disrupt elementary bodies
Amoxicillin 500mg 2x a day
(Some have omitted this step; my doctor believes it is helpful).

For line #1, there are multiple regimens that could be used
Here's a few
Doxycycline 100mg 2x a Day + Zithromax 250mg Mon, Wed, Fri
Doxycycline 100mg 2x a Day + Rifampin 300mg 2x a Day
Doxycycline 100mg 2x a day + Roxithromycin 150mg 2x a Day
Zithromax 500mg every other day + Rifampin 300mg 2x a Day

And if you wanted to go completely nuts you could do actually do Rifampin+Zithromax+Doxycycline for line #1

My current regimen is:
Amoxicillin 500mg 2x a day
Doxycyline 100mg 2x a day
Zithromax 250mg Mon/Wed/Fri

Flagyl 500mg 2x a day, pulsed every other week. (One week on, one week off).
On Vanderbilt Antibiotic Protocol since January
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Nifedipine

Postby gibbledygook » Thu Jun 23, 2005 2:35 am

Hi Daunted!
My parcel of nifedipine just arrived from Fiji and I was wondering how much to take. I also have noticed that in the Taking Other Medicines section on the consumer information leaflet this medication may interfere with erythromycin and rifampicin. I am not taking either of those but am assuming that the nifedipine should be taken a few hours away from the antibiotics as it seems that it may interfere with certain classes of antibiotic. Anyway I was hoping that you might explain how much and when you take nifedipine. Could you? :?
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Re: Nifedipine

Postby Daunted » Thu Jun 23, 2005 8:04 am

gibbledygook wrote:Hi Daunted!
My parcel of nifedipine just arrived from Fiji and I was wondering how much to take. I also have noticed that in the Taking Other Medicines section on the consumer information leaflet this medication may interfere with erythromycin and rifampicin. I am not taking either of those but am assuming that the nifedipine should be taken a few hours away from the antibiotics as it seems that it may interfere with certain classes of antibiotic. Anyway I was hoping that you might explain how much and when you take nifedipine. Could you? :?


I take 30mg of Nifedical XL (generic for Procardia XL) at night.

I haven't noticed any effects, really, and don't know that I will, but it's supposed to reduce the chronicity of CPn by encouraging it to leave the cryptic form.

I looked up the interaction, see http://dmd.aspetjournals.org/cgi/conten ... 24/10/1121 ...
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Thank you!

Postby gibbledygook » Thu Jun 23, 2005 8:12 am

Thank you! I find your research is reassuringly thorough as evidenced by Dr Wheldon nearly prescribing nifedipine for the reasons you mention. Let's hope all these pills keep working!
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Postby SarahLonglands » Mon Jun 27, 2005 4:11 am

Yes, Daunted's research is nothing if not thorough, but I must say, if I had known at the time that David was thinking of putting me on nifedipine, I would probably have declined the offer, because I can be as annoying as anyone if I put my mind to it and pride myself on not needing to take statins for their real purpose.

I am thinking of swapping from metronidazole to tinidazole for my next booster dose, though, because it is often much more easily tolerated, apparently.

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 Daunted » Thu Jun 30, 2005 1:27 pm

I've been on the antibiotics six months and so here's a short update. Actually it's turned out to be a very long one, so no hard feelings if you don't read on, I just would like to pass my experience on so that it may benefit others, and of course, it is helpful to express myself, as well:

I have switched regimens a couple of times, unfortunately. The hope was to switch, once- from Doxy+Rifampin+Amoxillin to the regimen recently used in the Vanderbilt Study, Azithromycin+Rifampin. They eradicated CPn in six months and I'm an impatient sort so I thought I would use that regimen, especially since it has been verified in a study.

That regimen is brutal, at least in my experience; it is VERY expensive (the Azithromycin is about $250 a month alone) and it is was very uncomfortable. I later learned that the reason they used Azithromycin 500mg every-other-day is because they only had six months for the trial; one can use 250mg M/W/F and it should work, if treatment is extended to a year. The idea in the trial was to wipe out CPn, FAST, and without using anti-inflammatory antibiotics. It's hard to think why this regimen would be used by anyone outside of a research setting.

But after concluding I couldn't sustain that regimen (cost-wise or side-effect wise, I switched to the most recent regimen out of Vanderbilt per Charles Stratton- Minocycline+Zithromax+Flagyl (and I chose to keep on with the Amoxicillin, see the patent above for the rationale). Unfortunately, Minocycline made me so dizzy that it was dangerous.

So, I'm curently on Doxycycline, Azithromycin, Amoxicillin, and Flagyl. I am now taking the Flagyl much more frequently than 5/30 days. This is up to individual tolerance of course. This is a comfortable regimen and I intend to stay on it for 6-8 more months.

I initially panicked at the switching of regimens, thinking this would be a huge problem in treatment (I envisioned Cpn bugs just multiplying like crazy and having to start over from ground zero), but then I read this in the the most recent patent for treatment of MS with antibiotics (you should all consider reading this link if you haven't already, it has really great info).

It may be desirable to change one or all of the drugs in the middle of the long-term therapy. Changes in drug combinations may be for many reasons, such as to reduce side effects or cost to the patient, or in response to a change in the patient's condition or degree of infection. Moreover, while it is preferable that the therapy is continuous, it is understood that interruption for as much as two weeks or even a month may be desirable or necessary.

So while it would be undesireable to be constantly revolving the antibiotics, there is no reason to think that changing regimens is a tragedy. On the other hand it is obviously best to find something that works and stick with it. That's what I am hoping to do from now on.

I have had some improvement of my leg weakness and I have had days where I could actually jog, which was incredibly exciting. I also have evolving spasticity so I am not sure about the relationship between the weakness, spasticity, and the antibiotics.

I have also had "old" symptoms pop up- issues that I guess would be classified as mini-exacerbations (a week or so of bladder problems for instance in the content of otherwise consistent symptoms) that happened prior to being on antibiotics and these have certainly not dissapeared completely. My neurologist tells me that this happens even in monosymptomatic clinically isolated episodes, he says that re-appearance of symptoms are 'constitutionally modulated'.

I have had my 3rd negative MRI since beginning treatment and a set of visually evoked potentials that were identical to those taken last year. My neurological exams show no progression. My visual field tests are stable as well. I go into a Tesla 3.0 next month which should be illuminating.

As far as what I have noticed from the treatment, the one thing that is prominent, while on the Zithromax, is that my joints are popping constantly. When I was on the week of minocycline this was even more pronounced. My doctor has patients reporting this with a variety of diagnoses linked to CPn infection; he thinks it is the bacteria dying, causing inflammation, hence the popping. It's chlamydia dying, he says! (He's a great doctor, he seems to relish the death of CPn).

I had decided to re-assess at six months to see if I would continue the treatment, as I have "suspected MS" and this is empirical treatment (although well-justified on clinical grounds). I will continue with the treatment. I have enough evidence that something is going on, to continue. If nothing had happened or I had progressed significantly in spite of it, I'd think I was barking up the wrong tree. Instead I have enough clues and vague indicators that I feel it is worth finishing up.

It is very difficult to assess how I am doing, though. This is only the 2nd year that I've had major symptoms and it is impossible to distinguish between an evolving disease process, side effects from antibiotics, and bodily reactions to bacteria die-off, if that is indeed what is occuring.

I also think it is unrealistic to expect too much in the way of results, quickly, especially if one does not have especially severe symptoms. In the Vanderbilt Study using Rifampin and Azithromycin, "There were no clinical changes." In the minocycline study in Canada, some patients had relapses (and lesions) during the first six months of taking minocycline. And I already have a negative MRI and CSF!

So, in my mind, the idea is to ensure that CPn (and possible Lyme) is eradicated, but to expect immediate relief from 'mild' symptoms is unrealistic. Perhaps others have had more impressive results, I don't know. But my symptoms do not lend themselves well to monitoring of improvement- no L'Hermittes, almost nothing that doesn't wax and wane, anyway, without the antibiotics. And many symptoms that have been with me for over a year now, and may be permanent or intractable. I will re-do the visually evoked potentials in a year, but for many people those remain delayed for a lifetime once an episode has occurred, so they may not reflect much for me. We'll see.

I continue to use the anti-endotoxin measures such as charcoal, chlorella, and Questran, but the effect of these is difficult to measure. If I lay off of them, it seems that I do feel cruddy. But not immediately. And if I take them regularly, it doesn't immediately resolve the issue- it takes time, which makes some sense. So it often seems as if I am feeling the results of whatever anti-endotoxin measures I used several weeks earlier. But even this is hard to assess. Comments on this idea would be welcomed. I guess overall the caution would be, it is much better to use some regularly, i.e., every day, then to take 60 pills of charcoal per day for 3 days and expect to feel better quickly. I have found that this simply doesn't happen.

I wish I could report more but I think that's all for the moment!

I'm still hopeful that this is a very positive intervention I am using, I just don't think it is 'magic' and think it will take some time to see the results.

All the supplements Sarah has listed are important, and I personally pay special attention to Vitamin C (forces Cpn into cryptic mode, 1g 3-4 times a day), Niacin (toxic to CPn), Vitamin D, B12, fish oil, and B-vitamin complex.

To summarize my current antibiotic regimen:

Doxycycline 100mg twice a day ($8 a month)
Amoxicillin 500mg twice a day ($20 a month)
Azithromycin 250mg Mon/Wed/Fri ($100 a month)

and

Metronidazole 500mg twice per day that it is pulsed ($1 per day)

(Dr. Wheldon and Sarah recommend 5 days per month; I am pulsing it every-other-week myself; it will vary by individual tolerability and bacterial load).

God bless you if you have read this far!
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Postby VladFT » Fri Jul 01, 2005 2:27 pm

Hi Daunted,
thanks for extensive update and all your posts which I'm following quite closely as well as Sarah's.

A few words about myself. I'm on an antibiotics regimen as well.
Around 5 months by now. Just like you I can't tell if there're many results or not at this point, though I'm a little optimistic. Part of it is definitely because I didn't have many symptoms in the first place. And even those seem to be fading. I still can jog , jump , play basketball etc. And what's more important I don't have any new symptoms - which is hopeful. The only interim result that I had was the second MRI that I took 5-6 weeks into the regimen (I didn't use Metronidazole at that point yet). My neuro seemed quite optimistic cause there was only a single enhancing lesion on it as opposed to around 8 on the first MRI. The old spots seemed to be healing. she said that apparently the medicine was working for me cause she would expect many more new lesions. The only thing she didn't know was that I was on antibiotics , and not on the Betaseron that she had prescribed. It's a bit complicated, but I can't tell that to her. At this point I want to proceed with the whole regimen for at least one more year and get a chance for another MRI.

I'm currently on Minocycline and Roxitromicin + Metronidazole. And so far I seem to take it quite well. I thought of adding amoxicillin as you do but here's what I 've come across as posibble interactions with other antibiotics of amoxicillin:
What other drugs will affect amoxicillin?
• Some drugs may decrease the effects of amoxicillin and prevent it from properly treating your infection. Before taking amoxicillin, tell your doctor if you are taking any of the following drugs:
· cholestyramine (Questran) or colestipol (Colestid); or
· another antibiotic (for the same or for a different infection) such as erythromycin (Ery-Tab, E-Mycin, E.E.S., others), tetracycline (Sumycin, others), minocycline (Minocin), doxycycline (Doryx, Vibramycin, others), or any other antibiotic.



What do you think about that - adverse interactions of amoxicillin with minocycline/doxycocycline ?

And also , about nifedipine - do you know if there is any way to get it through Internet Pharmacies, an Australian Pharmacy which is popular in this community (that's where I get all the antibiotics too :) ) does not seem to have it.

Thank you very much.
Good luck.

Vlad
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Postby SarahLonglands » Fri Jul 01, 2005 2:41 pm

Hello Vladimir,

If you are on doxycycline/minocycline and roxithromycin, the amoxicillin is superfluous. It is only really for people in the USA who can't get roxithromycin on official prescription.

I'm glad you are doing so well, by the way, and will look forward to hearing of your continuous improvements!

Take care,

Sarah :)
Last edited by SarahLonglands on Fri Jul 01, 2005 2:49 pm, edited 1 time in total.
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 SarahLonglands » Fri Jul 01, 2005 2:48 pm

Hello Daunted,

(Dr. Wheldon and Sarah recommend 5 days per month; I am pulsing it every-other-week myself; it will vary by individual tolerability and bacterial load).

Dr. Wheldon might recommend it, but I would sooner be able to do without it! This verifies that I really am a wimp for stopping my last booster dose just because the temperature hit the mid nineties! 8)

I initially panicked at the switching of regimens, thinking this would be a huge problem in treatment (I envisioned Cpn bugs just multiplying like crazy and having to start over from ground zero), but then I read this in the the most recent patent for treatment of MS with antibiotics (you should all consider reading this link if you haven't already, it has really great info).

It may be desirable to change one or all of the drugs in the middle of the long-term therapy. Changes in drug combinations may be for many reasons, such as to reduce side effects or cost to the patient, or in response to a change in the patient's condition or degree of infection. Moreover, while it is preferable that the therapy is continuous, it is understood that interruption for as much as two weeks or even a month may be desirable or necessary.

Well, at least I am not the only person prone to panic! This is very good advice, though, so long as you remember that once you stop rifampin you can't restart it for about a year, because of dangers of resistance. That's no loss, though, because it is one of the less pleasant antibiotics, to my mind. Although David did say this evening that it is believed to be slightly bactericidal in its own right, which could account for some of its unpleasantness. :?

Good night all!

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 Daunted » Sat Jul 02, 2005 10:47 am

Well one of the reasons for panic is that we're all blazing new territory here, for the most part, and different experts are offering different options.

For those of us who can't get Roxithromycin, both Rifampin and Azithromycin have been recommended. I'm sure they both work but Azithromycin has been so much easier to tolerate, yet I was made anxious by the prominent posts on the Internet which claim that Zithromax doesn't penetrate the Blood-Brain Barrier well enough to be of use in CNS infections; I contacted Vanderbilt asking about this and was told that Azithromycin accumulates in brain tissue quite nicely- see the reference below.

(I'm assuming that it accumulates in spinal cord tissue, as well as brain tissue...if there's any reason to believe this isn't true, will someone please let me know, as I definitely need spinal cord coverage)

ANTIMICROBIAL AGENTS AND CHEMOTHERAPY, Mar. 1996, p. 825–826 Vol. 40, No. 3
Copyright q 1996, American Society for Microbiology
Distribution of Azithromycin into Brain Tissue, Cerebrospinal
Fluid, and Aqueous Humor of the Eye

SUTEP JARURATANASIRIKUL,1* RATRI HORTIWAKUL,1 THAWAT TANTISARASART,2 NAKORNCHAI PHUENPATHOM,3 AND SUKIT TUSSANASUNTHORNWONG3

To measure the concentrations of azithromycin in the central nervous
system, 20 patients with brain tumors (group I) received a single 500-mg
oral dose of azithromycin either 24, 48, 72, or 96 h prior to the tumor
removal operation and 10 patients with cataracts undergoing surgery
(group II) and 7 patients scheduled to undergo lumbar puncture (group
III) received the same dose of azithromycin 24 h prior to the operation or
procedure. Serum from all patients, brain tissue from group I, aqueous
humor from group II, and cerebrospinal fluid from group III were assayed
for azithromycin concentration. The mean concentrations of azithromycin
in brain tissue 24, 48, 72, and 96 h after administration were 2.63 6 2.58,
3.64 6 3.81, 0.74 6 0.37, and 0.41 mg/g, respectively. In contrast, the
concentrations of azithromycin in cerebrospinal fluid and aqueous humor of the eye were very low or undetectable.

Therefore, these data show that azithromycin appears to be widely distributed into brain tissue but not into cerebrospinal fluid or aqueous humor of the eye.
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Postby SarahLonglands » Sat Jul 02, 2005 11:54 am

Daunted,

Yes, you are quite correct and David has discussed this with Charles Stratton, they having become the best of friends fighting a common enemy. The main thing is just that it is the CSF where azithromycin is not found whereas roxithromycin gets absolutely everywhere. If Stratton was allowed to use roxithromycin he would. Even David is treading on thin ice here because it is not on the national lists, but doctors are allowed to prescribe it and import it from France. It is also the most trouble free of drugs to take, which is why David prescribes it out of preference.

Rifampin is nowhere near so easy to tolerate as any of the macrolides (Anything ending in -mycin) and can't be used intermittently, so when the time comes for booster doses one would have to change to a macrolide in any case. I think my panic comes more from the fact that according to received neurological wisdom, I shouldn't be getting better: people with progressive disease don't. They should just accept it and await their fate. Huh! :evil:

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 GPlover » Sat Jul 02, 2005 12:50 pm

If someone wants to order roxithromicin without presciption they can at www.drugdelivery.ca. They sell both brand "Rulid" and generic. Both come from Europe so it is the original stuff.
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Postby Daunted » Sat Jul 02, 2005 1:21 pm

I went to the website- how do you know that what you are getting is reliable?

It said it would ship from New Zealand or Australia...
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Postby SarahLonglands » Sun Jul 03, 2005 8:41 am

GPlover and Daunted,

I had a look at the site, out of interest and discovered things to be somewhat better than I had anticipated, having read through all the guarantees and so on.

However, with regards to Roxithromycin, some is indeed shipped from New Zealand or Australia, where it is incidentally a legitimate prescription drug, by the way. However, the original "Rulid", made by Aventis in France, is shipped from Europe.

It says something on the site which I am not sure about, which is this "Although RULID may be available from different countries, the RULID you receive will be of the exact same quality regardless of where in the world the RULID is shipped from. The different RULID prices simply reflect what the manufacturers charge in that region of the world for the same medication. All prices are listed in American (USD) dollars. We ship RULID world wide, place your order today!" and "In some countries RULID may also be known as: Roxithromycin, Cirumyan, Forilin, Rossitrol, Rotramin, Surlid."
Well, "Rulid" is the Aventis brand name of Roxithromycin, in the same way that "Flagyl" is a brand name for Metronidizole.

It also says in a floating window which can't be copied, when you hold the cursor over "Europe" on the top left hand corner, "Drugs from Europe are filled and shipped by a licensed European pharmacy. No prescription is necessary when ordering from Europe." Well, Rulid is a tablet, not a capsule, so can't be 'filled' as such. Since it says the same thing on any other drug, this might be an oversight, but I'm not sure about the claim that no prescription is needed when ordering from Europe. There are many countries in Europe. I know that you can buy Rulid over the counter in Spain, apparently. But not having bought it there myself, I don't know if is the right stuff. I have never been to another European country and needed to buy antibiotics or anything else that you could only get with a prescription in this country, so I really am not sure if this is correct.

So I am not coming to any conclusions! :?

Edit: 05-07-04-17.04 BST, taken from February's Lancet:

Resistance to antibiotics is more common in southern and eastern Europe than in northern Europe because the regions have high rates of antibiotic use, suggests a study published in this week's issue of The Lancet.
Herman Goossens (University of Antwerp, Belgium) and colleagues compared antibiotic use with antibiotic resistance rates in 26 European countries from the beginning of 1997 to the end of 2002. To control for the different population sizes the investigators expressed data in defined daily dose per 1000 inhabitants daily (DID).

The study found that the prescription of antibiotics in primary care in Europe vary greatly. The highest rate was in France (32?2 DID) and the lowest was in the Netherlands (10?0 DID). Across Europe antibiotic use was lower in northern, moderate in eastern and higher in southern regions. Seasonal fluctuations were high in southern and eastern European countries, whereas in northern European countries the increase in antibiotic use during the winter was less than 25%. In most countries the researchers found a growing use of the newer antibiotics (active against a broad spectrum of micro-organisms) and a decline in use of the older antibiotics (active against a narrow spectrum of micro-organisms).

The authors believe the data will be useful for assessing public health strategies that aim to reduce inappropriate antibiotic use and resistance levels. In the article they write that the differences in antibiotic use between countries might be explained by variations in incidence of community infections, culture and education, differences in drug relations and in the structure of the national pharmaceutical market.

This somehow seems to imply that the floating window is incorrect to say " No prescription is necessary when ordering from Europe"


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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