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

[Critterina]

Oh, my goodness! I was snooping around looking at what other things could cause enthesitis-like symptoms, reacting somewhat to msf taking offense, and I found something that sheds new light on something that happened to me. So, thank you everybody for participating in this post, and thank you msf, for taking a bit of offense.

I found this: http://www.uptodate.com/contents/reactive-arthritis. In 1986 I had a campylobacter infection and within 7-10 days I developed what looked like lupus (SLE), with high ANA, negative RA, high sed rate, and a whole host of symptoms. I started into spontaneous remission after 31 days, although it took 6 months to heal enough to function well, worsening changes in brain chemistry at 10 months after infection were treated with antidepressants, and it took 10 years for my sed rate to get to normal again. I always felt they might have been related, the campylobacter and the "auto-immune arthritis" (my diagnosis), and now I know they might have been!

Sorry for hijacking your post, Nila! It was really exciting for me.

 

[msf]

Yes Critteriina, Campylobacter can also cause Reactive Arthritis, just like Yersinia can. However, I was tested negative for Camplyobacter, Salmonella and Chlamydia, and positive for Yersinia, so I would be very surprised if my enthesitis was caused by one of these other pathogens.

Oh, and as I said, I developed the enthesitis shortly after I had had the classic symptoms of Yersiniosis.

 

[msf]

By the way, Nila, I've PMed you (you receive this messages in your inbox, at the top left of the page).

 

[Jonathan Edwards]

To clarify, KDM is definitely not saying that.

KDM did an IgA/IgG Yersinia test and it came up positive.

It was I who noticed that PR posts about Yersinia often talk about enthesitis, and that there a few or no posts on PR that mention enthesitis without Yersinia.

I have not even discussed the possible connection with KDM yet.

Does this help? My brain is a muddle today, so I am struggling to communicate.

Yes, I realise that it was you and not KDM who raised the thought about entheses.

Enthesial pain is very common in normal people - 'tennis elbow' is the commonest and I suspect PWME will have enthesial pain much more often as part of generalised pain problems. But that is not enthesitis, which is an inflammatory condition with oedema of the tendon or ligament insertion and which is specifically associated with problems after infections like Yersinia and with ankylosing spondylitis. There are also mechanical causes for enthesitis but they look different from post infective enthesitis.

 

[NilaJones]

Yes, I realise that it was you and not KDM who raised the thought about entheses.

Enthesial pain is very common in normal people - 'tennis elbow' is the commonest and I suspect PWME will have enthesial pain much more often as part of generalised pain problems. But that is not enthesitis, which is an inflammatory condition with oedema of the tendon or ligament insertion and which is specifically associated with problems after infections like Yersinia and with ankylosing spondylitis. There are also mechanical causes for enthesitis but they look different from post infective enthesitis.

Oh, thank you very much -- I didn't understand the difference at all.

I don't have generalized pain. I have very fragile tendons, ligaments, and fascial sheets (e.g. palmar fascia), and dozens of chronic injuries to specific locations with those tissues. I also have pain to the touch, at every enthesis in my body. But I don't have pain elsewhere -- muscles, organs, etc.

My sister is the same, and our paternal grandmother, which was a major factor in the EDS diagnosis. But it doesn't really seem like standard EDS-3 to me. I could be wrong about that.

 

[Critterina]

Yes Critteriina, Campylobacter can also cause Reactive Arthritis, just like Yersinia can. However, I was tested negative for Camplyobacter, Salmonella and Chlamydia, and positive for Yersinia, so I would be very surprised if my enthesitis was caused by one of these other pathogens.

Oh, and as I said, I developed the enthesitis shortly after I had had the classic symptoms of Yersiniosis.

Thanks, msf. I wasn't saying you had Campylobacter, but that I did. I tested positive for it, and had green algae-like diarrhea. The seventh day after, I had a crick in my ankle, but was feeling better enough to try to walk it off. Then wham, multi-system haywire. I never knew these could be connected before, and my wondering how a person can tell, like you say you can, enthesitis from other joint/tendon issues by experience, not by MRI, was what got me looking.

 

[Critterina]

@NilaJones,

I keep trying to put myself in your place and figure out what I would do.

Even though your insurance turned down MRIs before, it seems worth asking. But if they take a long time to turn you down, maybe it's not worth waiting and you want to start treatment.

What I was wondering today is, how much of your ME/CFS do you think exists apart from the Yersinia/enthesitis? I mean, if you fixed the Yersinia/ethesitis, what do you think would be left? Me in your place, thinking aloud: The less ME/CFS I think would remain, the more I would be in favor of trying the recommended antibiotic. The more ME/CFS I think would remain, the more I would feel fragile and would assign greater risk to the antibiotic.

Of course, you know you better than I know you. I will support you in whatever you choose. For now I don't have much more to offer, and need to investigate possible clinical trials for another friend, so I'm going to turn my subconscious to that. Let me know if you need me back on this, OK? Hugs!

 

[msf]

HI Critterina, I understood you were talking about yourself rather than me. The reason I could tell was that I have had tendon pain before (Achilles tendon) and this felt like it was in a different location, and when I looked up the location online, I found that it was where the entheses are located.

 

[msf]

Actually, the Achilles problem contributed to me not taking a course of Cipro I was prescribed as soon as I fell ill, which had I taken it might have stopped me developing a chronic illness. I mention this to show that sometimes not taking Fluoroquinolones can result in a lot of suffering too.

 

[NilaJones]

@Critterina, and everyone:

I, too, have had my focus pulled elsewhere. Immediately after I posted the OP here, my cat was attacked by a pit bull. Cat was in the ER 3 days, and is now home and requiring a lot of care. I am exhausted -- have not been this sick in a year.

As for how much I think treating the Yersina would help me -- potentially enormous.

Methylation, diet, and warmth have done wonders for my fatigue issues. I am not back to normal (evidenced by my collapse due to caring for cat), but have reached the point where I start to look ahead and try to figure out what 'normal' is .

My remaining disability is 98% due to my tendon issues. If treating the Yersinia makes me able to walk, that would be amazing.

OTOH, if the FQ makes my tendons worse, that would be awful.

Critterina, I send loving wishes to your friend.

 

[Critterina]

My remaining disability is 98% due to my tendon issues. If treating the Yersinia makes me able to walk, that would be amazing.

OTOH, if the FQ makes my tendons worse, that would be awful.

Critterina, I send loving wishes to your friend.

My dear Nila,

98%, and there is standard of care for that condition...it still depends on how big a risk-taker you are. I know your forbears were risk-takers (just from the when and where) and I think you will go for it, acutely self-observing in case it takes a turn for the worse. However, I will support you WHATEVER you choose.

Good news, my friend has chosen a clinical trial. Thank you for your wishes and requesting supporting thought on Wednesday, when she will try to enroll. (I was really too late to do much good beyond showing her I care by trying to figure everything out - that's OK, she is very capable.)

Best of everything, especially health, to you and your kitty!

Critterina

 

[NilaJones]

Updating:

I have been talking with people in the KDM patient group here and, with their encouragement, emailed my questions to KDM. But, before he got a chance to read them, he sent me an updated scrip adding a second fq, Ofloxacin! So I sent updated questions...

 

[Critterina]

Updating:

I have been talking with people in the KDM patient group here and, with their encouragement, emailed my questions to KDM. But, before he got a chance to read them, he sent me an updated scrip adding a second fq, Ofloxacin! So I sent updated questions...

No word back yet?

 

[NilaJones]

No word back yet?

Not yet.... Thank you for reminding me to remind them!

 

[NilaJones]

Woohoo, pestering pays off!

Ira says:

Prof. De Meirleir has suggested alternative antibiotics:
Cefuroxim 500 mg T.I.D. and Doxycyclin 200 mg O.D. They have to be taken simultaneously.

Comments?

@Critterina, @msf, @Gingergrrl, @Jonathan Edwards, @caledonia, @Valentijn

 

[Critterina]

@NilaJones,

I'm fine with the Doxycycline, but now you are weighing a fluoroquinolone against a cephalosporin.

This is what I've read: Cefuroxime crosses the blood-brain barrier, too. And it's susceptible to beta-lactamase-producing bacteria inactivating it, unlike other second generation cephalosporins. Who knows if your Yersinia makes beta lacatmase? Heck, I don't know if any of them do.

Stuff you might look at:

1. http://www.ncbi.nlm.nih.gov/pubmed/3497913 "Eighty five patients, 46 with enteric and 39 with extramesenteric forms [of Yersinia enterocolitica] were treated. The clinical response to co-trimoxazole was 71%, and to doxycycline 75%. Cefuroxime, ceftazidime, cefoperazone, piperacillin and gentamicin failed in seven of eight courses." but most people recovered without antibiotics.

2. http://www.ncbi.nlm.nih.gov/pubmed/10803262 Almost all tested strains [199 clinical strains of Yersinia enterocolitica serotype O3, biotype 4] were resistant to ampicillin and cefazolin and susceptible to amoxycillin/clavulanate, cefaclor, cefamandole, cefuroxime, cefotaxime, ceftriaxone, aztreonam, imipenem, gentamicin, amikacin, netilmicin, tetracycline, doxycycline, chloramphenicol, ciprofloxacin, sulphamethoxazole, co-trimoxazole, trimethoprim and furazolidone."

3. This was fun: http://web.stanford.edu/~jonc101/tools/Antibiogram/AntibiogramTable.htm

You put in your organism and your treatment, and out pops likely sensitivity. So, am I reading this right? 90% chance that the Doxycycline will wipe it out, and 50% chance that the Cefuroxime will wipe out anything the Doxycycline doesn't?

4. http://www.researchgate.net/profile...ntibiotics/links/02e7e51c418d30a33a000000.pdf This paper showed 65% susceptibility of Yersinia isolated from pigs in Poland, to Cefuoxime - a bit better than the 50% of the reference above.

So, I guess there's a precedent for this choice.

https://www.gsksource.com/pharma/co...Prescribing_Information/Ceftin/pdf/CEFTIN.PDF is the full prescribing information. I'd look at sections 5 and 6, to see what adverse events were reported in the pivotal trials and post marketing. Knowing that you might be more vulnerable, I'd look at everything that has ever been reported, to see what it's possible you might be up against.

Best wishes on your decision!

Critterina

 

[Critterina]

Just for giggles, I did the fun thing against Avelox:

 

[NilaJones]

@NilaJones,

I'm fine with the Doxycycline, but now you are weighing a fluoroquinolone against a cephalosporin.

This is what I've read: Cefuroxime crosses the blood-brain barrier, too. And it's susceptible to beta-lactamase-producing bacteria inactivating it, unlike other second generation cephalosporins. Who knows if your Yersinia makes beta lacatmase? Heck, I don't know if any of them do.

Stuff you might look at:

1. http://www.ncbi.nlm.nih.gov/pubmed/3497913 "Eighty five patients, 46 with enteric and 39 with extramesenteric forms [of Yersinia enterocolitica] were treated. The clinical response to co-trimoxazole was 71%, and to doxycycline 75%. Cefuroxime, ceftazidime, cefoperazone, piperacillin and gentamicin failed in seven of eight courses." but most people recovered without antibiotics.

2. http://www.ncbi.nlm.nih.gov/pubmed/10803262 Almost all tested strains [199 clinical strains of Yersinia enterocolitica serotype O3, biotype 4] were resistant to ampicillin and cefazolin and susceptible to amoxycillin/clavulanate, cefaclor, cefamandole, cefuroxime, cefotaxime, ceftriaxone, aztreonam, imipenem, gentamicin, amikacin, netilmicin, tetracycline, doxycycline, chloramphenicol, ciprofloxacin, sulphamethoxazole, co-trimoxazole, trimethoprim and furazolidone."

3. This was fun: http://web.stanford.edu/~jonc101/tools/Antibiogram/AntibiogramTable.htm
View attachment 11786
You put in your organism and your treatment, and out pops likely sensitivity. So, am I reading this right? 90% chance that the Doxycycline will wipe it out, and 50% chance that the Cefuroxime will wipe out anything the Doxycycline doesn't?

4. http://www.researchgate.net/profile...ntibiotics/links/02e7e51c418d30a33a000000.pdf This paper showed 65% susceptibility of Yersinia isolated from pigs in Poland, to Cefuoxime - a bit better than the 50% of the reference above.

So, I guess there's a precedent for this choice.

https://www.gsksource.com/pharma/co...Prescribing_Information/Ceftin/pdf/CEFTIN.PDF is the full prescribing information. I'd look at sections 5 and 6, to see what adverse events were reported in the pivotal trials and post marketing. Knowing that you might be more vulnerable, I'd look at everything that has ever been reported, to see what it's possible you might be up against.

Best wishes on your decision!

Critterina

Oh, @Critterina , thank you, that was awesome! I am having a super sick few days and thrilled not do my own research

I thiiiink his idea is that the Doxycycline is for the Yersinia and the other is for tweaking my gut bacteria. But you may be right that they will do a two prong on the Y.

Giant hugs to you