Avelox (Moxifloxacin), Yersinia, and KDM???

[NilaJones]

Hello everyone .

I saw KDM in November, and now I finally have his diagnosis and suggested treatment.

He says I have a Yersinia (bacteria) infection and should take Avelox (= Moxifloxacin, a fluoroquinolone antibiotic), 400mg, 1x/day for 20 days.

I had not heard of this drug before, and came here to look it up. I see a lot of threads by people saying it, or its related drugs (like cipro), *caused* their ME/CFS.

Ummm.... should I take this stuff? Should I ask for an alternative? ARE there any alternatives for Yersinia?

I am excited about the Yersinia diagnosis, and treating it in one way or another, because when I look it up here I see references to enthesitis (inflammation and pain where tendons attach to bones). Enthesitis is one of my primary symptoms, and no doc ever seems to have any ideas about it.

Tagging in some folks here who have been awesome to me in the past, and who might have suggestions on this: @Sushi, @Critterina, @caledonia, @Star-Anise @ahmo

Thank you, anyone and everyone who has thoughts to share .

 

[ahmo]

Hi Nila. I had to look up all those terms. The onlything I can offer is my blog post which has a list of herbal anti-fungal/bacterials, with suggested dosing schedules, and references you can follow up. I hope you're able to clear up the enthesitis now.

 

[NilaJones]

Oh, thank you, @ahmo, and thanks for the heads-up about defining terms! I will edit the OP for clarity .

 

[Vojta]

Hi,
I was taking moxifloxacin for 11 days last year (I wanted to do 20 days). It's the nastiest drug I'v ever taken. All fluoroquinolones have potentially very toxic side effects but this one caused me very severe and unpleasant neuropathy. I had mild neuropathy before but after 4-5 days it became much worse. I had to stop after day 7 for 1.5 day because extreme tremor, brainfog and severe tingling in limbs. I did 3 more days then it was clear I can't continue. Fortunatelly side effects started fading away after I stopped and it took few months to reach previous level of my neuropathy symptoms.
But it was only antibiotic which improved my chronic prostatitis so I guess it could be very effective.
I would try it but watch for developing side effects and stop befor they accumulate enough to do any major damage.

 

[Vojta]

Oh, and I mentioned it to KDM (he didn't prescribe it to me). He seemed interested and just said that it cannot be taken for longer periods.

 

[ahmo]

Oh, thank you, @ahmo, and thanks for the heads-up about defining terms! I will edit the OP for clarity .

No, I think it's that I just don't know about medications...ah, I see it's a flurquinolone...bad news. As Vojta has already posted.

OK, add: this class of drugs has a tendency to be bad on tendons, can cause real damage. So seems ....unfortunate...to prescribe it for inflamed tendons.

 

[ahmo]

Here are some references. I don't want to scare you, but it's better to be aware beforehand. I researched this awhile back because my DH had been on Cipro, one of the well-know of this class, for an extended period. Fortunately, although he did seem to manifest some tendon issues, they cleared once he was off it. others haven't been so fortunate.
http://floxiehope.com/

http://www.survivingcipro.com/useful-information/three-things-that-worked-for-me/

http://www.survivingcipro.com/my-favorite-links/

 

[AkeBono]

I would ask for an alternative if there is one. I was given CIPRO 3 rounds in a year and it was bad-bad. make sure you dont have snps or metabolic pathways that interfere with your drugs or other condition you have. e.g some antibiotics are sulfa - forms ...fluoroquinones can interfere with thyroid from what Ive read. maybe thats why they recommend short term usage.

I cant remember now exactly the herbal forms but you can check ideas of Buhner for that. the herbalist. He said its also depending if the infection has spread or is limited to one organ etc. Milk thistle seems to help...

How did you find out about yersinia? was it blood test or culture?
If was culture were they able to test also antibiotics on it?
yersinia was the only cause discovered?

good luck,

 

[msf]

Hey Nila,

I was prescribed the same antibiotic for the same infection by KDM. I did not notice any side effects, except for a worsening of my GI symptoms towards the end of the course (when I told KDM about this he said this is common). Unfortunately, it did not seem to clear my infection. 3 weeks of fluoroquinolones, however, is the recommended treatment for Yersinia though, so KDM is doing it by the book here. I assume if this fails he will prescribe a longer course of antibiotics, as he has in my case.

Re: Moxifloxacin, I looked into it a bit and it seemed to be the case that it is one of the safer fluoroquinolones, for reasons to with its chemistry (and possibly the dosing too). There seem to have been very few cases of tendon damage so far, however I think the risk is always there with fluoroquinolones.

 

[msf]

Btw, why did it take so long to get the diagnosis? I have never heard of it taking seven months before.

 

[Valentijn]

@NilaJones - I've heard anecdotal and vague recommendations to use NAC to protect against the damage which some types of antibiotics might cause. In the case of fluoroquinolones, it does seem to be backed up by research. Here's a few free-access studies:
http://aac.asm.org/content/44/4/867.full.pdf html
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2916349/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3981197/

Regarding the use of fluouroquinolone antibiotics, they might be somewhat advantageous in that they might have a more equitable impact on gut bacteria. I've been taking antibiotics for Lyme and Bartonella, and now have a usually benign bacteria (Bacteroides) which has been able to take over my gut, probably due to it being resistant to most other types of antibiotics. In addition to an imbalance being bad in general, this type of bacteria can cause extremely serious issues if it makes it into the blood stream. So a heavy-hitter like Avelox might help avoid that sort of situation.

I'm still waiting to hear what Dr de Meirleir wants to do about my gut issue, but I suspect a similar antibiotic might be used. And I'm glad to know that there's an easy way to help prevent the antibiotics from causing collagen damage, especially since I already take 1800mg NAC per day

 

[Jonathan Edwards]

Hello everyone .

I saw KDM in November, and now I finally have his diagnosis and suggested treatment.

He says I have a Yersinia (bacteria) infection and should take Avelox (= Moxifloxacin, a fluoroquinolone antibiotic), 400mg, 1x/day for 20 days.

I had not heard of this drug before, and came here to look it up. I see a lot of threads by people saying it, or its related drugs (like cipro), *caused* their ME/CFS.

Ummm.... should I take this stuff? Should I ask for an alternative? ARE there any alternatives for Yersinia?

I am excited about the Yersinia diagnosis, and treating it in one way or another, because when I look it up here I see references to enthesitis (inflammation and pain where tendons attach to bones). Enthesitis is one of my primary symptoms, and no doc ever seems to have any ideas about it.

Tagging in some folks here who have been awesome to me in the past, and who might have suggestions on this: @Sushi, @Critterina, @caledonia, @Star-Anise @ahmo

Thank you, anyone and everyone who has thoughts to share .

An experienced rheumatologist should not have much difficulty confirming enthesitis and it there is doubt an MRI scan would show it definitively. If there is untreated bacterial infection it is right to deal with that with an antibiotic but in the vast majority of cases of enthesitis the infection has gone and the process continues for other reasons we do not fully understand. So in general antibiotics are not used to treat recurrent enthesitis. It is treated with a range of anti-inflammatory drug types ranging from things like ibuprofen to TNF inhibitors.

I would be interested to know how the diagnosis of yersinia infection was made and how come if it was made it took six months to get around to recommending treatment! In general an active bacterial infection should be treated within a couple of days.

 

[Gingergrrl]

I know this will not be a popular response but in good conscious I have to write it anyway. Avelox is one if the most dangerous of the FQ antibiotics and I would not touch it if my life depended on it but that is just me based on the horrific nightmare I went through with Levaquin.

 

[msf]

Gingergrrl, do you have any evidence for Moxifloxacin being 'one of the most dangerous of FQ antibiotics?' Just curious, because all the articles I read seemed to suggest it was one of the least, apart from perhaps the increased risk of QT prolongation, which I think was implicated in 3 cases, all in the elderly.

NilaJones, enthesitis is also one of my primary symptoms, and no doctor apart from KDM could provide an explanation for it either. As Prof. Edwards says, enthesitis in Reactive Arthritis is not completely understood yet, but several studies have shown that YadA, a Yersinia protein, can adhere to collagen. Another study showed an increase in auto-antibodies to type 1 collagen in patients with Yersinia-triggered Reactive Arthritis.

I think the diagnosis was made in the same way mine was, using the immunoblot technique that has superceded the antibody agglutination technique pretty much everywhere apart from the UK. The reason the antibody agglutination test is no longer used is that it was found to have negligible sensitivity in chronic Yersiniosis.

 

[Critterina]

Hey Sweetie!

Sorry it's taken me so long to get to this. In these 108-degree days I seem to be in sort of a time-warp.

So, my thoughts:

1. I love the comment @Jonathan Edwards made. An MRI to confirm sounds like the way to go. If it's confirmed, it's a risk vs. benefit decision.

2. Sorry to hear that the antibiotic is a fluoroquinolone. The illness that left me with histamine intolerance included three courses of the fluoroquinolone Levaquin (and one of augmentin and one of doxycycline). It was apparent I had HI before the last course of Levaquin, but my heart sort of blames it.

3. If you really are histamine intolerant, you may react to NAC. I do. It's listed in the literature as one of the supplements to avoid. But since you can use tomatoes, you're not all-reactive like I was. Maybe test it before you start on your treatment, to see if you can use it.

Love to you!

 

[caledonia]

Oh boy - as the others are saying - be extremely careful with fluoroquinolines. I had toxic reactions to Floxin and Cipro, luckily nothing permanent that wouldn't be caused by other antibiotics though.

The issue is fluoride which is a toxin. People who get zapped by the fluoroquinolones are called Floxies. Those who have MTHFR (which is almost everyone on this board as far as I can tell) are more likely to become Floxies.

I would ask your doc if there is any alternative which is not a fluoroquinolone.

 

[msf]

I find the idea that Nila and I need to have an MRI to confirm whether not we have enthesitis slightly offensive and very patronising. This is not something we (or at least I) have been told we have; it is something we experience every day. I may not have a medical diploma, but when I find that I have pain everywhere my entheses are supposed to be, I'm pretty confident in my own diagnosis. How would you like it the doctor wouldn't accept that you have a pain in your knee until he had found the source on an MRI? What actually would have been helpful would have been some old-fashioned doctoring - asking us where it hurts and then trying to work out what is causing it. Furthermore, 'proving' enthesitis with an MRI scan will not show what is causing it, so it will not help Nila to decide whether to take the Moxifloxacin or not.

Re: the people who have warned against taking fluoroquinolones, I hear what you are saying, but fluoroquinolones would not be the recommended treatment for Yersinia if there was a better, or even equally good alternative - doctors know that these are powerful, and potentially harmful, antibiotics.

 

[Valentijn]

Those who have MTHFR (which is almost everyone on this board as far as I can tell) are more likely to become Floxies.

Most of the people not on this board also have MTHFR mutations.

Do you know of any actual research which correlates MTHFR mutations with reactions to fluoroquinolones?

 

[Gingergrrl]

Msf, you asked me about Avelox and at the time that I had a systemic neurotoxic reaction to Levaquin which also nearly tore my triceps tendon I was in perfect health at that time.

These drugs have five FDA black box warnings (no east feat!) and many are banned outside of the US.

I saw over 15 doctors to try to regain use if my right arm after only seven pills if Levaquin. I read the entire Flox Report from cover to cover and became a huge advocate promising I would alert others who asked about these drugs. If someone asks here, I feel a duty to warn. People can then do their own research and make their own decisions.

With informed consent of tendon rupture, fatal tordades de pointes, mitochondrial damage, psychiatric side effects in people with no prior history, permanent peripheral neuropathy etc, this class if meds are poison. Without informed consent, people are taking who may not know.

The original poster asked a question and can now research (or not) on her own.

 

[msf]

Gingergrrrl, you have not provided any evidence for your claim that Moxifloxacin is one of the most dangerous of the fluoroquinolones. This review of 14 years of clinical data found that its safety profile was comparable to comparators, which included Beta-Lactams as well as other Fluoroquinolones:

http://www.ncbi.nlm.nih.gov/pubmed/22715866