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I have a few questions for those of you taking antibiotics (I am on Amoxicillin and Doxycycline, adding Rifampin soon):

1. I take Bromelain and I see that it interacts with amoxicillin, making it more bio-available, supposedly. Good thing or bad thing?

2. I am having some GI difficulties despite taking loads of probiotics. How much is too much when it comes to that? I wonder if am taking too much.

3. Is the charcoal necessary if I am having no dramatic Herx reaction? I have a heck of a time scheduling it into my day; I do manage to take some now and then at night. I think I recall the doctor saying that it would be hard on my liver if I didn't take the charcoal...?

4. Has anyone else noticed that the most common antibiotic side effects are also signs of a mild Jarish-Herxheimer reaction? I've had a strange taste in my mouth, headache, some agitation....all can be explained on the basis of side effects OR Herx reaction. How confusing to someone in limbo like myself.

I've been on them just a month now, just about to start Rifampin, and nothing to report yet....probably won't report in until I've had two or three pulses of Flagyl. But thought I would ask these questions as the answers could be helpful to me and others taking abx.

Thanks

D.

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Quick answers!

1. Anything to make one of the antibiotics more bio-available must be a good thing.

2. This is difficult if you are spacing your probotics throughout the day, but if you can leave at least two or three hours after taking them before taking the probiotics, this should help. I managed better when just on doxycycline and roxithromycin, because I took them all together: well, the doxy when I got up and the roxy with elevenses. Rifampin you have to take in two lots, so I took one first thing and the next mid-afternoon. Flagyl is more problematic, but luckily is only taken for five days at a time! Actually I had some GI difficulties at first, no matter what I did, but this sorted itself out after, um.....about a month to six weeks, I seem to remember.

3. Like you I never managed to take charcoal regularly, but always very last thing at night, two hours after anything else. Depending on the exact sort of GI difficulties, ie: not constipation, charcoal could be useful but there are only so many hours in a day.

4. Yes, I have and I think this maybe because the side effects are due to the Herx reaction. Remember that these antibiotics were not developed specifically for C Pn infection, in fact some were even developed before C Pn was known to be a pathogen. Therefore it seems to me that what was thought to be a side effect is really a reaction to the pathogen, and thus evidence of its existence. Or evidence of some other pathogen not yet discovered?

I hope this helps and doesn't confuse you more!

Sarah

Sarah (or anyone else):

I am taking Doxycycline; supposedly the protocol came right from Vanderbilt as of 11/04.

Any idea why Doxycycline instead of Minocycline? The patent reads that Minocycline is the preferred agent.

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Minocycline certainly gets into the brain in somewhat larger quantities, but doxycycline has far fewer side effects and can be taken more or less indefinitely for this reason. This is not the case with minocycline, so I wonder how the people taking it for purely immunomodulatory reasons are going to fare when they have to stop.

David's protocol uses doxycycline and either roxithromycin or rifampicin because the two constituents act synergically and therefore far more effectively than using just minocycline by itself. This is probably why Vanderbilt revised their protocol for people not in a trial.

Remember that in their recent trial, Vanderbilt were not using any antibiotics with immunomodulatory qualities, so as not to confuse the issue:any improvement it can't be put down to immunomodulation.

Sarah
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Sarah,

Thanks for the answers, I am sure others appreciate it as well.

I know the Vanderbilt scientists recently used Zithromax and Rifampin, hopefully to demonstrate an anti-bacterial effect rather than anti-inflammatory...but then I found this on the web:

(Found at http://www.mayoclinicproceedings.com/in ... D=302&UID=):

Macrolide antibiotics have several anti-inflammatory effects. They affect migration of inflammatory cells and production of proinflammatory mediators, cytokines, and superoxide by activated leukocytes.72-77 By subduing inflammation, these antibiotics may stabilize atheromatous plaque, which may in part explain some of the benefits noted in the trials involving patients with acute coronary syndromes.

Erythromycin increases constitutive nitric oxide synthase and thus nitric oxide release in human endothelial cells.78 Both erythromycin and roxithromycin have antioxidant properties.73

So while it's not immunomodulation, what do we do about this problem? Or is this data from coronary artery disease not relevant?

Any information would be appreciated...if it was the express purpose of the Vanderbilt docs to avoid anti-inflammatory meds, and they used one anyway, that just seems bizarre- but this just doesn't compute.

Well, zithromax (azithromycin) is to a certain extent anti-inflammatory, but it doesn't get into the brain in any appreciable quantity. Roxithromycin is the only macrolide which is supposed to be able to do that.

http://jac.oupjournals.org/cgi/content/ ... suppl_2/47

"There are many published reports on the anti-inflammatory effects of macrolides, some dating back to the introduction of erythromycin. Macrolides have been shown to affect a number of the processes involved in inflammation, including the migration of neutrophils, the oxidative burst in phagocytes and the production of various cytokines, although the precise mechanisms are not clear. These effects have been linked to the ability of macrolides to accumulate in mammalian cells. Roxithromycin, a macrolide with better plasma concentrations and higher tissue concentrations than erythromycin, has been tested in a standard animal model used for evaluating anti-inflammatory drugs. When rats were given a prophylactic dose (20 mg/kg), roxithromycin suppressed the oedema produced by injecting carrageenin into the paw with effects almost equal to that seen with the non-steroidal anti-inflammatory drug nimesulide. Azithromycin and clarithromycin, macrolides with better pharmacokinetics than erythromycin, only showed slight anti- inflammatory effects. These results confirm that roxithromycin has anti- inflammatory properties in vivo and encourage the investigation of its mode of action. "

Sarah

My fellow takers of antibiotics,

I have been on Amoxicillin for about a month, Doxycycline for over two weeks, and Rifampin for five days.

One of my prominent symptoms is "Restless Legs Syndrome"- which doesn't just occur in my legs, it occurs in my trunk and upper body as well. All of a sudden my whole body will just shudder- it's semi-voluntary but if I don't do it, I feel a tremendous tension. Does that make sense?

In any case this symptom has worsened badly since I started the Rifampin. It is so hard to tell, but I think it worsened moderately with the introduction of the Doxycycline.

RLS has has went from something that ocurred several times a day to something that happens several times per hour; or something that was sometimes present continually for 5-10 minutes to something that is now incessant for up to an hour.

Is this in any way a reported side effect of combination antibiotic treatment (Amoxicillin, Doxycycline, Rifampin)...in other words, anything to worry about?

I thought maybe it was due to too many B-vitamins but I don't think so.

Just wondering if anyone had any thoughts. I'm in limbo, with unremitting symptoms, going through empirical treatment for CPn infection.

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I'm afraid I don't know anyone on exactly your combination of antibiotics, but I can say a few words about my own experience and that of others who have given me permission to do so:

What you describe as 'Restless Legs Syndrome' is something that I personally had experienced for several years before starting treatment, mainly affecting my right leg, but sometimes up into my trunk. I would notice it more when just sitting quietly. I would sometimes try not to do it, but I would feel that tremendous tension. This continued for long after starting the antibiotics, but then gradually subsided, more so after a few doses of metronidizole (flagyl). Now, I just don't experience it.

Other people are different. One person being treated with the same regime for arterial disease, experienced comparatively little until he started on the metro, then one night felt a similar thing in his upper body. He removed his shirt to see what was going on and saw what looked like something under his skin, moving from his trunk, up over his shoulder and down his back. It presumably was different muscles tensing and relaxing in succession. It again, was more noticeable when relaxing and gradually subsided. It must have been about a year ago when he first experienced this, but now is not troubled at all.

If you are really worried about this, I should email Dr. Powell, who surely won't mind.

Sarah
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Sarah,

I have an appointment with him shortly, and I will mention it- I'm just always interested in as much info as possible!

The most obvious explanation is to consider it a temporary worsening of my polyneuropathy on the way to recovery. It's also the most optimistic, since I'm doing empirical treatment, so I'm a bit reluctant to pronounce it so immediately- wanted to see if any other possibilites are likely.

I did temporarily discontinue all my supplements except for the charcoal.

The Rifampin is a bit harder to handle than the Doxycycline. You know when you take it. But I've only been on it 5 days so I'm waiting to see if that smoothes out some, and I suspect it will.

Thanks for responding!

.Daunted,

Yes, you are certainly right about knowing when you take rifampicin. I changed from doxycycline to rifampicin after about six months and it really knocked me sideways for a few days, but I soon got over it. I would have gone back to the doxycycline if I hadn't!

The one thing that seems to be certain about this treatment is that it is not easy for most people and is constantly full of surprises. I was very fortunate in being able to have the three MRI scans as evidence of my improvement. I might have thought the neurologist to be moderately interested, but it seems not. I guess that being based at Addenbrookes, he is wedded to Campath, which is no use to anyone with progressive disease.

The latest info about Aimspro is that it will cost about £20,000 a year, by the way, so antibiotics seem like a bargain, with not a needle in sight!

Sarah

20,000 pounds is, if I am not mistaken, almost $40,000. Wow!

The buzz I had read had made it sound as if it would be much cheaper- and it's hard not to see this as excessive.

I guess we'll have to wait and see what materializes but that does sound distressing- especially as far as widespread distribution- who will be able to afford it? They could cover 3 people on Copaxone for the same cost!

For anyone that is interested here in the U.S., if your insurance won't pay (I'm trying, but am not sure yet), the antibiotic protocol for CPn is less than $200 a month. And hopefully you are only on it for a year or so.

Oops, sorry Daunted, a slight slip of the fingers there: the dollar and pound signs are next to each other on my keyboard, so I meant to say $20,000. That is still much more than abx, though!

Sarah

Yes, I snooped around a bit myself and found that they are supposedly charging about $200 an injection for those that aren't in the trial but want the drug on a private, "named-patient" basis.

I suspect the cost will drop once they mass-manufacture it...the question is, how much?

Their earlier press led me to hope for a very affordable product, but one has to wonder.

Of course, hopefully, the antibiotic regimen will be effective and I won't need any further intervention! ...I pulse Flagyl starting tommorrow. Nothing dramatic so far...nothing much at all, really.

I noticed that you were on Metronidazole (we call it Flagyl here) 400mg 3x a day, and I am prescribed 500mg 2x a day. Small difference but I wonder why.

Oh and Sarah, what do you and your husband make of the HHV-6 research...? There's this new study at http://brain.oupjournals.org/cgi/conten ... t/awh390v1 ....any ideas how this logically fits in with CPn infection as the culprit?

Always hopeful but skeptical...

D.

I noticed that you were on Metronidazole (we call it Flagyl here) 400mg 3x a day, and I am prescribed 500mg 2x a day. Small difference but I wonder why.

I don't know, but I kind of wish I was on your regime: easier to fit in! It is probably just down to the doses that metro and flagyl are readily obtainable in.

As for the HHV-6 research, I just know what David will say: CPn is the culprit but it makes way for the much smaller but still easier to find HHV-6 to follow along behind!

Sarah

Hi,

In Britain Metronidazole is available in 200mg. tablets. In Canada and the USA evidently, it is only available in 250mg tablets. I posed the question of dosage to David and he recommended 500mg, three times daily.

Colin