Daunted's antibiotic log

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

Postby Anecdote » Mon Apr 11, 2005 5:22 am

Done my homework - well some of it!

I'm not sure about the reasons for Benicar, since it is used to treat high blood pressure in the British National Formulary. However I found this about Questran. It is part of this page about treatment of Lyme disease, so the similarities are obvious:

Two groups have reported evidence that Borrelia, like several other bacteria, produce neurotoxins. These compounds reportedly can cause many of the symptoms of encephalopathy, cause an ongoing inflammatory reaction manifested as some of the virus-like symptoms common in late Lyme, and also potentially interfere with hormone action by blocking hormone receptors. At this time, there is no assay available to detect whether this compound is present, nor can the amount of toxin be quantified. Indirect measures are currently employed, such as measures of cytokine activation and hormone resistance. A visual contrast sensitivity test (VCS test) reportedly is quite useful in documenting CNS effects of the neurotoxin, and to follow effects of treatment. This test is available at some centers and on the internet.

It has been said that the longer one is ill with Lyme, the more neurotoxin is present in the body. It probably is stored in fatty tissues, and once present, persists for a very long time. This may be because of enterohepatic circulation, where the toxin is excreted via the bile into the intestinal tract, but then is reabsorbed from the intestinal tract back into the blood stream. This forms the basis for treatment.

Synthetic fiber agents, available by prescription for the treatment of high cholesterol, have the ability to bind some bacterial toxins. When take orally in generous amounts, the neurotoxin, present in the intestinal tract, binds to the resin, is trapped, and then excreted. Thus, over several weeks, the level of neurotoxin is depleted and clinical improvement can be seen. Current experience is that improvement is first seen in three weeks, and treatment continues for two to four months. Retreatment is always possible.

Two prescription medications that can bind these toxins include cholestyramine resin (Questran), and Welchol pills. These medications may bind not only toxins but also many drugs and vitamin supplements. Therefore no other oral medications or supplements should be taken from one hour before, to three hours after a dose of one of these fiber agents.

Cholestyramine must be taken four times daily, and Welchol is prescribed at three pills twice daily. While the latter is obviously much simpler to use, it is less effective than cholestyramine. The main side effects are bloating and constipation, best handled with increased fluid intake and gentle laxatives.

http://www.ilads.org/burrascano_1102.htm



And also this about Pangestyme, which you probably alreasdy have:

http://www.pangestyme.com/pages/pdf/58177002904_PIS.pdf

So, 'could do better'.

But I also thought to add this:

Yaeyama Chlorella is a single-celled algae, a whole food, containing zero binders, preservatives or fillers, but filled with 100% natural ingredients.

Millions worldwide are taking Chlorella because it:


Lessens the severity of an illness, and you recover more quickly from it
Relieves the effects of arthritis and fybromyalgia pain
Protects the brain from age-related memory loss
Normalizes blood pressure and promotes a lower 'bad' cholesterol count
Detoxifies the body, removing even heavy metals and pesticides
Protects against some cancer-causing agents found in food
Boosts the immune system, increasing the body's resistance to bacteria, viruses, and toxic chemicals
Regulates digestion and supports good bowel health

Copied from here:

http://chlorella-europe.com/index.html

I don't think I have added it to my regimen page yet, but I do take between eight and twelve of these a day. They taste a bit like an accidental mouthful of seawater and they mean you need to take much less charcoal.

I hope this helps!

Sarah :)
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Postby Daunted » Mon Apr 11, 2005 1:12 pm

Sarah,

Thanks so much. I've ordered some Chlorella, am taking Questran, Charcoal, Fiber, Benicar, and now, Pangestyme.

The uncertainty is the worst! The myalgia doesn't respond to any of these measures quickly and I guess it is important to be quite religous about taking all of this stuff. Still, I keep worrying that the myalgia is just a side effect of the Rifampin, as it is a labeled adverse effect...

Still it's a bit too much of a coincidence that a few of us have had myalgia of the back, neck and shoulders...

Stay tuned I guess!
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Postby Daunted » Thu Apr 14, 2005 10:23 am

I am waiting for a few more months before posting any further "progress notes" but I am noticing this pattern:

During metronidazole pulse: Mood is depressed, very tired. Sometimes, symptoms flare up a bit; when they do, it is dramatic (like fasiculations) and oftentimes in areas I haven't noticed before.

3-7 days after pulse: Symptoms get very bad. Leg weakness much worse!
Resolves within a week.

I also find myself "craving" the Metronidazole pulses, which I find very intriguing, since they make me feel like crap.

This could all be random, but I wonder.
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Me too!

Postby gibbledygook » Thu Apr 14, 2005 11:19 am

I am on the third day of my first "pulse" and I am tired, emotional, cold and my symptoms have also flared a bit especially the spasms. I think I also had fasiculations or an odd sensation of things creeping under my skin but I may be imagining this now. I am also very thirsty. Mmmm.
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Re: Me too!

Postby Daunted » Sun Apr 17, 2005 1:21 pm

Just started pulse #4 of Flagyl (metronidazole).

Hours after my first dose on pulse #4, I walked outside, and the bright light hurt my eyes...and, in addition, it felt like I was walking on the deck of a ship! Very unsteady...and not a symptom I've ever experienced before.

The lesson: Dramatic new side effects can appear "late" in therapy (I've had 22 days of metronidazole previously, in my first 3 pulses).
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Re: Me too!

Postby Daunted » Sat May 07, 2005 2:28 pm

I switched from Doxycline to Zithromax a few weeks ago.

Immediately, all my joints started popping like crazy. It was almost ridiculous. It's settled down, now, but for the first two weeks, it was POP, POP, POP POP POP POP...and that was just the sound of me getting up and walking across the room!

Has anyone else experienced this?

My doctor states that he has seen LOTS of patients with CPn infections popping as they kill the infection.

I'm feeling better than I have in months, don't know if that is connected or not.

Lesson: I would go with Zithromax before Doxycyline, now.

Take care all!

D.
Last edited by Daunted on Sun May 08, 2005 12:20 pm, edited 1 time in total.
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Postby Anecdote » Sat May 07, 2005 4:39 pm

Hello Daunted,

I'm afraid I have only just fully taken note of your previous update about walking on the deck of a ship, I'm sorry, because if I had fully taken it in I would have replied! This is exactly what I have experienced, in fact still do from time to time. Do you still get it? You in fact are getting it sooner than I did, which is maybe good news for you. I have it on someone's personal experience that it does eventually go.

As for the joints popping, it maybe because the azithromycin is less immunomodulatory than doxycycline, apart from the fact that it is better at getting into the joints. This is an interesting thought: a few years ago a young friend (12 years old then,) kept commenting upon my popping knees, way before I started antibiotics. Then, every time I went to see them she would listen and they would pop. Now, after over eighteen months of treatment they don't, at all. I have just been walking round my studio to check. Explanations, please!

Reply to lesson: Azithromycin does not get into the brain so well, so both at various points could be an idea with some people, but with definite MS, bearing in mind that you are taking the stuff for a year, by that time it should have cleared out all the joints as well. It seems to have done with mine. I did, by the way, get little visible inflammations on the outer part of the knee joint. Those have gone as well.

PS: I was going to email you tonight, but it is now 00.30, so you will have to wait until tomorrow, I'm afraid. If the world was flat, rather than a sphere, we could do away with all these time zones.

Take care,

Sarah :wink:
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Postby Daunted » Sun May 08, 2005 12:16 pm

The 'walking on the deck of a ship" phenomenon only happened once or twice, while on Flagyl. My symptoms are pretty mild (objectively, not to ME) so maybe that's why I'm not having the same degree of reaction.

I'm not sure I understand why the differences in immunomodulation would cause more popping on Zithromax rather than Doxycycline...? But this is quite a puzzle to me. I have been meaning to post another log entry, and I will eventually...but in the meantime I will just say that the joint popping began IMMEDIATELY the day after I began Zithromax (and perhaps 48 hours after discontinuing doxycycline).

But, I admit this doesn't make much sense. I have been on an unconventional protocol: In addition to Doxycycline, Rifampin, and Amoxicillin, I was placed on a 12-week cycle of Levaquin (levofloxacin) to treat a secondary infection that arose when I applied the full protocol. Levaquin is renowned for its ability to penetrate joints and other tissues. Yet I had no joint popping on Levaquin...?

Curious!

Or, perhaps I do understand, are you saying that Doxycycline slows up the immune response a bit, or has an anti-inflammatory effect, and that's why there was no popping previously...but once it was removed, I started popping? Doxycycline was, of course, one of the first antibiotics I started taking.

Any thoughts appreciated!

And what is the time difference, anyway? As an ignorant American I would like to know!
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Postby Anecdote » Mon May 09, 2005 5:21 am

Well, quite honestly I really don't know. What I do know is that you are right about the doxycycline, so perhaps stopping it was the reason for the popping. I really don't know how it compares to amoxicillin, though, apart from the fact that doxy is better at getting into the brain. Rifampicin is too but without any damping down of the immune system, which is why it hit me for a few days when I changed from doxy to that. I did still have the roxythromycin, but it was still much less damping down than I had got used to.

Going back to your first paragraph I'm glad that the walking on the deck of a ship only happened once or twice. I still have it a bit even now, but have largely got used to it. I would guess your symptoms are comparatively mild because you have less of a bacterial load. This is a funny thing because someone who lives nearby, who was being treated for chronic fatigue, showed quite a high level, certainly compared to me, but I am the one who felt the unpleasant effects more, and almost instantly I started, but I would hazard a guess that my germs were more well-hidden. That sounds really scientific, doesn't it! He is now striding about like I don't know what and looks incredibly healthy. Mind you, so do I, I just have difficulty as yet doing too much striding. I'm working on it though.

And what is the time difference, anyway? As an ignorant American I would like to know!


Oh, so you are ignorant, are you? You could have fooled me! Five hours, if you really don't know, and no, the earth isn't flat. How are you with centimetres? That really confuses a lot of Americans, but I find it so much easier to use than feet and inches. :wink:

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Postby Daunted » Mon May 09, 2005 6:00 am

Sarah,

I did some reading and I suspect the reasons are two-fold; one, Doxycycline is anti-inflammatory; two, Zithromax does penetrate into joints quite well; withdraw the first and begin the second, and wham, pop pop pop. Interestingly, the popping is already receding, now, so I had perhaps 4-7 days of intense popping and a couple of weeks of moderate popping. I still get the occasional "pop" but it is nothing like it was.

I wasn't sure if the time difference was 5 or 8 hours! And I'm not so good with centimeters, meters, or any of that...I was of the age, that they taught us all metrics in school, quite aggressively, because the USA would be switching, soon...(1970s)...but it never happened!

For anyone that is interested, there is an article in Scientific American this month on Chlamydia. I don't know if the UK and US versions are different, or not.

I am sure I do have a relatively low bacterial load. Having said that, it is quite uncomfortable, so I feel for those of you who had a more obvious toxic reaction!
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Postby Anecdote » Mon May 09, 2005 7:57 am

I wasn't sure if the time difference was 5 or 8 hours! And I'm not so good with centimeters, meters, or any of that...I was of the age, that they taught us all metrics in school, quite aggressively, because the USA would be switching, soon...(1970s)...but it never happened!


Well, I was assuming you lived on the east coast! :wink:

We also were taught metrics at school a few years before you, but it never has happened properly here. Some things are, some things aren't: very confusing. So I tend to think in metric, but that confuses a lot of my friends, who went back to the old ways as soon as they left school.

The Scientific American article, on line at least, appears to be just about 'the other' chlamydia, but I only had a quick look.

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Postby Daunted » Mon Jun 06, 2005 1:40 pm

I am adding nifedipine 30mg to my regimen; it supposedly helps in driving CPn out of the cryptic form, and may block some endotoxin-related unpleasantness.

I was previously taking Benicar, but that was $150 a month; nifedipine (Procardia) is about $50 a month.

See the article, below:

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

Macrophage L-type Ca2+ channel antagonists alter Chlamydia pneumoniae MOMP and HSP-60 mRNA gene expression, and improve antibiotic susceptibility.

Azenabor AA, Chaudhry AU, Yang S.

Department of Health Sciences, University of Wisconsin, Milwaukee, WI 53211, USA. aazenabo@uwm.edu

Recent data have shown a unique relationship between Ca2+ signaling in macrophages through L-type channels and the outcome of C. pneumoniae infection of such cells. The present investigation seeks to provide insights into the manner in which macrophage L-type Ca2+ channel operation affects major outer membrane protein (MOMP) and heat shock protein-60 (HSP-60) mRNA gene expression (factors associated with Chlamydia chronicity), and the possible effect of this on antibiotic susceptibility. Intracellular calcium ([Ca2+]i) chelation using varying doses of 1,2-bis (o-aminophenoxy) ethane-N,N,N'N'--tetra acetic acid (acetoxymethyl) ester (BAPTA-AM) induced an increase in MOMP and a decrease in HSP-60 mRNA gene expression. L-type Ca2+ channel antagonists produced an identical but enhanced effect. Since these findings associate specialized Ca2+ channels to Chlamydia chronicity, it was important to determine Ca2+ channel effect on the usual antibiotic refractory form of C. pneumoniae in macrophages. Inhibition of macrophage L-type Ca2+ channel operation improved C. pneumoniae antibiotic susceptibility assessed by decreased inclusion counts or down-regulated MOMP and HSP-60 mRNA gene expression.

These findings provide molecular insights into how specialized Ca2+ channels influence Chlamydia chronic course in macrophages and demonstrates a role for L-type Ca2+ channel inhibitors in enhanced C. pneumoniae susceptibility to antibiotic therapy.
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nifedipine

Postby gibbledygook » Tue Jun 07, 2005 3:19 am

Hi Daunted! I'm interested that you are adding nifedipine to your regime and was presuming that you have done so because the antibiotic therapy doesn't seem effective. Is this the case or are you just seeing if the nifedipine enhances the antibiotic therapy?

Regards,

Alex
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Postby Anecdote » Tue Jun 07, 2005 3:31 am

Nifedipine? But how does a calcium channel blocker, prescribed for high blood pressure and angina help drive CPn out of the cryptic form? :?

Ok, don't speak before you read the whole thing, Sarah. I know now. Interesting. Perhaps you should add it to that thread in the "Antibiotics" section listing various studies for/about CPn to which I added a couple more. Have you found it works with the 'endotoxin related unpleasantness,' though?

I'll forward this to David, who might well not have seen it because the main microbiological thing at the hospital at the moment seems to be to do with the start of the barbecue season: campylobacter from undercooked chicken, for goodness sake!
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Postby Daunted » Tue Jun 07, 2005 5:56 am

It's not that the antibiotic regimen has been ineffective, gibbledygook, in fact I have been doing quite well in some ways. I was actually back to jogging for a while(!) but then I did 12 days of Flagyl in the past 3 weeks, and that has set me back considerably. I had about a year of unremitting symptoms and only since starting the antibiotics have I had some relief.

I will post a full update in a few weeks, after I've detoxed from the most recent round of Flagyl. I have had "mild" symptoms (by MS standards) and for me, there have been many weeks where the treatment was more uncomfortable than the original symptoms- but that's from the CPn die-off, ostensibly, and not from the antibiotics themselves.

Nifedipine is one option offered by the good Dr. Powell; the article I abstracted seems to demonstrate that it increases CPn susceptability to antibiotics by driving CPn out of the cryptic form.

I can't post the full article here obviously but I would be very interested in Dr. Wheldon's opinion on this- it seems like it would be a great addition to the regimen.
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