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

[Gingergrrl]

I am not in my home yet and have no computer or belongings at the moment. I have no links to provide and on my phone. Read the Flox Report, FDA black box warnings, info from Dr. Jay Cohen's site, movie "Certain Adverse Events" etc. The choice is individual, I gave my opinion and people can investigate further or not. If I prevent one person from suffering what I did it is worth it. Not here for debate on the FQ's. Best wishes to the original poster whatever you decide.

 

[msf]

Hmm, I don't think warnings without any evidence are very helpful. And I would trust a 14 year review of comparative data over websites and a movie any day. Again, I'm not trying to pretend that these drugs are harmless: I am just pointing out that doctors are prescribing them for Yersinia infection without considering their safety profile.

 

[Gingergrrl]

Do as you wish. The woman who made the movie lost use of both her knees from Levaquin and can no longer walk. She was an award winning director prior to this and it ended her career. I will never regret trying to warn people about these meds. People can listen or dismiss me. I have nothing else to add or any agenda except to prevent another person from suffering as I did. Honestly you can take the info or leave it.

 

[msf]

You don't seem to consider the possibility that your advice has the potential to cause suffering as well as the potential to prevent it. Doctors have to weigh up both these possibilities when they decide whether to prescribe a drug or not. Since every drug carries a risk of anaphylatic shock, I could warn people against taking any drug, but I am pretty sure this would cause more suffering than if I did nothing (if people listened, of course). Every time you take a drug, therefore, you have to weigh the risk of taking it against the risk of not taking it. When you do this it helps to have data that can inform your decision, which is what I tried to provide, although you would need some data about the risk of not taking it to make a truly informed decision.

This is hard to find in the case of Yersinia as there are a lot of arguments about its long-term effects, but the one large epidemiological study that has been done showed that 'For males, the observed and expected cumulative survival rates were significantly different after one year of observation (0.9802 < 0.9941; p < 0.025), thereafter life expectancy did not deviate from that of the general population. For females, the deviation of the curves was significant, and still present at the lapse of the 10-year period (0.8980 < 0.9315; p < 0.05). Regarding the whole material, the difference between the observed and expected cumulative survival rates remained significant for 8 years (0.9189 < 0.9456; p < 0.025).'

http://home.online.no/~asaebo/clinical.htm

Despite the fact that, as a male who has had the infection for over a year, I am statistically unlikely to die from it in the next 10 years, I would still consider taking months of fluoroquinolones if other treatments failed to clear the infection, because when you make the decision you also have to take into account your current quality of life.

 

[msf]

Finally, you also need to weigh up the efficacy of different treatments for Yersiniosis. Unfortunately, only one paper has been published on this, over 20 years ago: http://link.springer.com/article/10.2165/00003495-198700341-00029

Since then, however, Fluoroquinolones have become the standard treatment, based on clinical experience.

Since Co-trimoxazole does not have a better safety profile than Fluoroquinolones, you would have to weigh the apparent greater effectiveness of Fluoroquinolones against the possibly better safety profile of tetracycline, whilst taking into account the evidence for increased resistance of Yersinia to Tetracyclines in the years since the above study was published.

 

[Ema]

FQ's also have the greater potential to cause harm in our population because they work via the GABA receptors. Many of us have dysregulated GABA/glutamate already causing neurotoxicity. FQ's thus have more potential for adverse effects in us than in "healthy" people. This is a little known fact that hardly any doctor takes into account when prescribing this class of drugs to those with ME/CFS.

If it were me, I would only take FQs if it were literally the last thing standing between me and death's door.

 

[msf]

I think this is more of a theoretical risk than one with any evidence to back it up. It is therefore difficult to judge how seriously to take it.

I appreciate everyone's concerns about FQs, but I feel that most of you are unaware of the difficulty of treating chronic Yersinosis, and I was therefore trying to provide a more complete picture. Perhaps I did not stress this difficulty enough - basically FQs are almost always used for Yersinosis these days, due to the clinical evidence of its efficacy I mentioned above, and because they have by far the lowest MICs against Yersinia. No serious adverse effects have been reported (to my knowledge) in any of these cases, including one small trial of 3 months of Cipro for Yersinia-triggered Reactive Arthritis.

 

[msf]

This paper suggests it may be possible to counter the neurotoxic effects of FQs with benzodiazepine-agonists.

http://www.japer.in/doc/jan-march 2013/93.pdf

 

[Ema]

This paper suggests it may be possible to counter the neurotoxic effects of FQs with benzodiazepine-agonists.

http://www.japer.in/doc/jan-march 2013/93.pdf

It isn't actually recommended to take benzodiazepines with FQs (or during withdrawal)as they seem to increase the incidence of adverse effects due to the FQs.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2435654/

Further, the study referenced used *healthy* subjects so absolutely nothing can be inferred as to what would happen when used in a population that is already neurotoxic.

 

[msf]

Hmm, but then we are back into characterization of disease cohorts again - I think that I may have more in common with some of those who have been treated safely and effectively with FQs for Yersiniosis than with some people with ME. I guess if you know that you have dysregulated GABA/Glutamate then this might be a concern, but I have no reason to think that this applies to me too, even if it has been shown to be the case in a significant proportion of people who fulfill the ICC/Fukuda/SEID criteria.

 

[Jonathan Edwards]

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.

There is a difference between a pain in the knee, which is a symptom, and enthesitis, which is defined pathologically as an inflammation of a tendon or ligament attachment. MRI often shows that even when there are no symptoms so it seems to be very sensitive. And enthesial pain does not have to be enthesitis. If it is not enthesitis then it probably has nothing to do with Yersinia and not an additional reason for taking potentially toxic antibiotics. People on PR are constantly complaining about not getting proper investigations and I support that. This is the sort of investigation that provides evidence doctors cannot ignore, I would have thought.

 

[msf]

Enthesial pain in or near entheses all over the body might not be enthesitis, even when there is IgA positivity to Yersinia, and the pain started shortly after the first classic symptoms of Yersinia infection? That seems incredibly unlikely.

Unfortunately, no one in the NHS was at all interested in my enthesitis, or most of my other symptoms. That is why people like me go to see KDM, who actually finds a plausible reason for such symptoms based on diagnostic tests.

 

[NilaJones]

Hello everyone, thank you so much for your posts on this topic!

@Jonathan Edwards: I live in the US. My health insurance recently denied MRIs for my TMJs (I have been on a liquid diet + high dose Celebrex for a year due to jaw pain), wrists (nerve damage from tendoitis and CTS), and knee (suspected torn meniscus). I don't think they are going to pay to MRI for enthesitis, although I certainly believe you that it would be medically appropriate.

My entheses, body-wide, are painful to the touch and easily injured. I have been diagnosed with EDS-3, but I don't know if this is a typical symptom for EDS.

 

[NilaJones]

I just want to say that I have read and am very grateful for everyone's posts here. I am having a bad brain fog day and so I feel I cannot reply coherently to specifics as I want to... tomorrow might be better. I don't want you all to feel you are dropping your responses down a well -- you aren't! I am reading and learning and thinking. And sleeping.

 

[Jonathan Edwards]

Hello everyone, thank you so much for your posts on this topic!

@Jonathan Edwards: I live in the US. My health insurance recently denied MRIs for my TMJs (I have been on a liquid diet + high dose Celebrex for a year due to jaw pain), wrists (nerve damage from tendoitis and CTS), and knee (suspected torn meniscus). I don't think they are going to pay to MRI for enthesitis, although I certainly believe you that it would be medically appropriate.

My entheses, body-wide, are painful to the touch and easily injured. I have been diagnosed with EDS-3, but I don't know if this is a typical symptom for EDS.

Yersinia-relateed enthesitis looks quite different from problems related to hypermobile joints (EDS III) at least in more long term cases. Enthesial pain and tenderness on their own would not necessarily be an indication of a Yersinia related problem. A good rheumatologist should have no trouble distinguishing, but good rheumatologists are not to be found everywhere!

 

[NilaJones]

Enthesial pain and tenderness on their own would not necessarily be an indication of a Yersinia related problem.

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.

 

[NilaJones]

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.

Do you feel comfortable saying what the new ab is, and how long a course? I think my stateside doc, who will be writing the prescriptions for KDM, would like to know.

 

[NilaJones]

Working my way through questions:

@msf

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

@Jonathan Edwards

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.

Well, IRL medical care is often far from ideal .

The timespan was partially due to a series of unfortunate events, although even under optimum conditions I don't think their process would allow for less than 6 months between tests and prescription.

1. KDM ran a large set of tests, results took 3 months to come in. This is apparently standard.

2. A friendly PR member told me that payment to the lab may be difficult, and to request a credit card form at the OV. I did this, but the nurse said, 'Oh, you don't need that,' and I did not insist. This was a BIG MISTAKE.

The lab said I could send payment by bank draft. I did this. First class mail to Belgium took 6 weeks, and when the draft arrived lab said they could not cash it. They tried to send it back to me but sent it to the wrong address. (I asked them to double check address, they said they sent it to correct one but I later saw the envelope and it was wrong city, wrong state.)

Without the physical copy of the bank draft, my bank could not stop payment on it. They had to wait 90 days for it to expire. (A very stressful 90 days, with my $4000 floating around in the mails. I had the tracking number and it crossed the ocean several times.)

For another payment form, the lab said they could NOT accept paypal. However, after exchanging hundreds of emails and finding no method that my bank could provide and theirs could accept, I just sent one euro by paypal to the secretary's work email account. They decided that was ok after all, and I sent the balance.

3. This released my lab results. Then it was 1 month for KDM to review the results and 2 more months for him to send his recommendations.

Oh, and for the KDM OV bill? A check sent to the address they gave me in Reno was returned, stamped 'address unknown'. But KDM's office does accept paypal (only for OVs, not for the labs).

 

[NilaJones]

More questions:
@Critterina

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.

Do you think you had HI before any of the Levaquin? And do you figure it is due to gut dysbiosis?

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.

Thank you for the warning!

Love to you!

And to you, my dear

@caledonia

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

Well, that is me.

@msf

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.

I agree with you on the first bit, but my experience of docs in general (not people like KDM or our own @Jonathan Edwards) is that they often do not know much about potential harm from the drugs they prescribe.

Last summer, a doc I had just started treatment with dropped me as a patient because I had an unpleasant, listed, side effect to a drug he had prescribed. He was all excited about my case until then. But having a common side effect meant I had Issues.

@msf

I guess if you know that you have dysregulated GABA/Glutamate then this might be a concern

I don't know that I do.

 

[Critterina]

Do you think you had HI before any of the Levaquin? And do you figure it is due to gut dysbiosis?

It's really hard to say whether I had HI before the Levaquin. It was the first Rx and the fourth and fifth, if I remember right. I've read that both viral infections and antibiotics can cause gut dysbiosis, so it's likely that it was one or the other. That whole episode did change my digestion significantly, and for the worse. I think there probably is a connection.

I had tried probiotics that worked as long as I took them, but the effects stopped within a couple of days of stopping. Last October I did a 4R gut rebuilding program for 8 weeks. I stopped it for a week and the positive digestive effects lasted. During that week I was at my brother's for Christmas. I was still reactive, but this year they were very cooperative in having things I could eat. Then I did my fast, the one where the HI resolved for 3 months.

After the three months, I don't know what caused me to start reacting to dietary histamines, but digestive problems didn't come back. After three weeks of reacting (April 21), I fasted again and was OK with dietary histamines again. About May 7 I caught a cold that went to my chest and used a week of Augmentin. The digestive problems reoccurred at that time. Then about May 26, when I was eating YMCA camp food, I started reacting to histamines again. Coincidence? I don't know. Seems related to me.

I've been doing the 4R program again for about a week, but haven't got the digestion fixed yet. I don't remember it taking this long, but it was 8 weeks I did. I have to keep reminding myself that. I'm too busy to fast, but I hope to get to that before the end of next week. I'll let you know.

And you're welcome for the warning about NAC.

Hugs!