Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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enthesitis/pain in tendons

Discussion in 'Pain and Inflammation' started by msf, Nov 11, 2014.

  1. msf

    msf Senior Member

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    Hi,

    I've been diagnosed with Yersinia by KDM, but all my Lyme tests have been negative so far.

    I would like to know if anyone else has enthesitis, that is, pain where the tendons meet the bone. I developed this symptom soon after I contracted Yersinia, and it comes back whenever my gut/sleep is bad.

    I have asked several doctors about it, but none of them seemed interested apart from KDM, who said it (pain in the tendons, I didn't know the word enthesitis then) was common amongst his patients. Now I wish I had asked him why my tendons/entheses are inflammed, and how I can stop it from happening. I will ask him next time I see him, but I just thought I would put it out in there in case anyone else has the same symptoms.

    Mark
     
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  2. Martial

    Martial Senior Member

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    Whoah I was just saying how I never heard of the plague in this day in age... Crazy to hear you got something like that, guess not as rare as I thought! :O Anyways to answer your question yes I have a lot of tendon pains, I also have Lyme disease but not sure if that is a factor for you. It is possible with certain infections that are co morbid like babesia and bartonella especially to cause it, also any kind of arthritis will also tend to cause tendon inflammation as well.

    Yersinia is treated with antibiotics so if its the cause of your inflammed tendons it should reverse with that. One more thing, a lot of people ask if I used quinoline antibiotics in the past when I mention tendon issues. I myself never used them but inflamed tendons are a very common side effect of that antibiotic. Do you know if you were ever treated with quinoline antibiotics in the past? Also just going forward never use the antibiotics if suggested for treatment, there are plenty of other class antibiotics with none of the repercussions.
     
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  3. msf

    msf Senior Member

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    Hi Martial,

    I can see I'll have to be more specific in future, that's the second time today...I tested positive for Yersinia Enterocolitica, I presume (the test just called in Yersinia), I don't think I would have lasted a year with the bubonic plague!

    Re: quinolones, I have taken them and am actually taking another course now, but I had the symptoms before I took any, and ironically I think my reluctance to take them in the first place (for that reason) might have allowed this infection/disease process to get established.

    I know there are horror stories, but it seems to me that fluoroquinolones are just an extreme example of modern medicines, i.e. what doesn't kill you makes you stronger.

    Have you had any luck with reducing inflammation in the tendons? Mine seem to flare up whenever my gut gets worse, which I would love for a doctor (or anyone) to explain...

    Mark
     
  4. Martial

    Martial Senior Member

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    Well not bubonic plague specifically but the same bacteria for that has multiple forms that can cause different symptoms for each person. Its closely related in the same family of gram negative bacterial pathogens transmitted through rodents mainly. I don't intend to make the fluoroquinolines sound like a horror story lol, just that they have their own share of side effects and that other antibiotics can accomplish the same benefits quite well. It is great it is working for you but the gut issues can easily be traced back with it.

    The infection you mention is notorious for also causing a crohns like presentation because it inflames the gut. Probably the flare of the infection happens to coincide at the gut and in the tendons simultaneously? There is also the issue that antibiotics will clear out your gut bacteria and cause gut dysbiosis. Its really important to be using strains of probiotic/prebiotics to help replenish the gut biome when this is going on. The best bet would be using VSL 3 prescription based probiotics from your doctor, alongside fermented foods, prebiotic containing foods, and supplements if need be.
     
  5. msf

    msf Senior Member

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    Thanks for the advice, all of it sounds very sensible.

    I've been prescribed vsl-3, and I was doing okay on it and the fluoroquinolone for the first 15 days, but I think it's affecting the gut now. I've only got 5 days left, so I hope I can manage to finish it.

    The gut symptoms predated any antibiotic use in my case, but I'm sure they haven't made it any better. It's difficult, because as you know, any of the Yersinia species aren't very good for you, so it seems worth the risk if I can get it out of my system.

    The one I have, Y. Enterocolitica, is mainly food-borne, but I read recently that it shows evidence of (at some point) being insect-borne (some kind of insecticidal gene or protein). The article suggested (I think) that insects might be reservoir of infection, although pigs seem to carry it too.

    Anyway, thanks for the concern.

    Mark
     
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  6. lnester7

    lnester7 Seven

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    I am soooo struggling with tendon pain myself (I have been for a while but it took me this long to figure where the pain was). I just finally figure what it is so I have not tell my doctor about it yet, so far I have a few bottles of water in the freezer then I put them in all areas for 10minutes (it cannot be longer than that), then let it rest and after a while repeat, Is keeping the pain at bay for now. I read about many reason for this even Fibromyalgia.

    I need to get tested and see if something else is going on.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    If you are already having tendon pain, you do not want to take a fluoroquinolone antibiotic (unless your life depended on it.). I am speaking from experience and the effects of FQ's are cumulative. They are extremely neurotoxic to the entire body and can not only rupture tendons but damage the mechanism that allows them to repair. I would be very cautious here!
     
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  8. msf

    msf Senior Member

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    I know it's risky, but so is having Yersinia in your body for the rest of your life, and unfortunately the most reliable antibiotics for treating it are the fluoroquinolones.

    Thanks for the concern, anyway, and if my Achilles tendon breaks I will probably agree with you. Unfortunately, medicine seems to progress more by trial and error than anything else.

    There was an antibiotic that showed promise in terms of resistant infections and seemed to have no side effects, but unfortunately only the Soviets seem to have mass produced it so far. It's called albomycin - if I could get that I would probably try that first, but when I looked online it cost 500 dollars a milligram.

    I guess this shows that medicine doesn't always progress in a straight line.

    Mark
     
  9. rosie26

    rosie26 Senior Member

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    This is getting a lot more noticeable for me now. When I get up to walk sometimes I have to be careful not to overstretch the back tendons in my ankles until they have 'warmed up' and flexible again. I haven't got pain, just a tight locked feeling from back of ankle to the foot.
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Mark,
    The presence of enthesitis after Yersinia infection is Reiter's syndrome. The persistence of the enthesitis has nothing to do with persistent infection, it is a post-infective phenomenon related to a hypersensitive immune response, very often linked to the tissue types HLA-B27 and B7. The problem tends to resolve over a period of 6 months to three years but in a proportion of people it persists long term. If it is severe it can be effectively treated with drugs like sulphasalazine or etanercept. Antibiotics are irrelevant after the initial infection has cleared.

    The reason for the enthesitis is not fully understood but we know quite a lot about this sort of condition. Reiter's is due to an overactivity of T cells in the MALT or mucosa-associated lymphoid tissue trafficking domain - that includes mucosa like conjunctiva and mouth. It may overlap with gut symptoms with GALT T cell trafficking. Enthesitis is a feature that occurs with all four of the T cell trafficking domain problems - Reiter's, Crohn's, Psoriasis, Ankylosing Spondylitis. The most plausible explanation I can find is that the enthesis is a site of high TGF beta production, which switches off certain T cell interactions with a paradoxical effect of allowing inflammation or fibrosis to set up (the reasons are complex relating to cytotoxic interactions). Inflammation in these conditions occurs at a wide range of tissues under high tension (like ligament attachment) throughout the body but enthesis and nail bed are the most common.
     
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  11. msf

    msf Senior Member

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    Thank you Prof. Edwards for a scientific explanation once again - the last doc I saw talked about a 'belief system.'

    I realise this might be what's going on in my case, but I am also open to the other possibility, which also has a lot of evidence for it - so far as I know there have been two studies of antibiotics in Yersinia-triggered reactive arthritis patients: the first (Dutch) showed faster remission of symptoms in the antibiotic group, with a corresponding reduction in antigen and antibody levels; the other (Finnish) showed no benefit initially, but in the 3-year follow-up there was a clear difference between the two groups.

    I guess these results could be explained by some other mechanism than bacterial persistence, and I would love to know which is true in my case, but since antibiotics seem like they might work, I think I will give them a try.

    I am interested in what you said about T-cell domains, as I seemed to have the classic Reiter's triad, but since I have gut inflammation too, I would be interested to know whether you think more than one T-cell domain can be affected at the same time (both my gut and tendon problems started with the infection).
     
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  12. msf

    msf Senior Member

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    Sorry, I've just seen that you said that GALT and MALT symptoms may overlap.
     
  13. msf

    msf Senior Member

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    That just leaves my nerve (fasciculations) and sleep issues unaccounted for...
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think there is no doubt that an appropriate course of antibiotic to clear the initial infection is often relevant in Reiter's syndrome. And it makes sense that the sooner the infection is cleared the less severe the post infective prpblems are likely to be. However, there is no doubt that the Reiter's syndrome symptoms themselves are post-infective and not directly due to infection. They respond well to TNF inhibitors without any evidence of reactivation of infection. TNF inhibitors are very good at reactivating intracellular infections if they are dormant - the chief problem is tuberculosis. So if Reiter's features were due to persistent infection we would expect to see that infection re-appear and it never does to my knowledge.

    The gut GALT domain and the mucosal MALT domain do have overlap - after all the gut is a mucous membrane and the mouth is a cross-over zone. The precise way the overlap shows in clinical disease is complicated and not really understood but gut involvement is not unusual in Reiter's. The CLA-4 skin domain tends to be rather more distinct but even so Reiter's has a skin feature that is histologically similar to psoriasis. My suspicion is that in most cases only one T cell subpopulation is affected but that the trafficking of these cells to a specific domain is not totally watertight.
     
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  15. msf

    msf Senior Member

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    It seems to me that the issue is whether there is still an infection there, not whether it is the T-cells or the bacteria causing the symptoms.

    The Dutch study was done in patients who had been ill for an average of 1.8 years.

    http://ard.bmj.com/content/59/11/914.full

    The Finnish one I mentioned was done with patients who had been ill for less than three months, so that might not be relevant.

    There is quite a lot of evidence for Yersinia causing chronic infection, so this is something I would like to rule out (if possible).

    Re: TNF alpha, I was very interested in what you said about it causing problems in patients with chronic infection, in light of the recent aborted study by Fluge and Mella of Etanercept in ME patients. Apparently this was aborted because of a worsening in the two of the four patient's (small sample, I know) symptoms. Do you know of any other conditions, apart from chronic infection, that might cause this? This would seem to me to be another reason to rule out chronic infection in patients who might potentially be treated with TNF-alpha inhibitors.
     
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  16. msf

    msf Senior Member

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    Oh, and I realise it's very difficult to prove chronic infection, that's why i was very interested to read that two of the placebo group in the Dutch study were positive by culture, one at month two and one at month four. It is possible, but unlikely, that these were re-infections, but it's much more likely that this was the result of a chronic (at least four month) infection. So if it can infect someone for four months, it seems to me that it might also be able to infect someone for a year.
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think maybe the underlying issue is that we know that Reiter's clinical features will occur following other types of infection when that infection has been cleared - salmonella or chlamydia for instance. So there must be explanation for the features, apart from persisting infection, and it would seem too much of a coincidence to me to have two mechanisms producing the same very characteristic pattern of features.

    I do not know what the view is about persistence of Yersinia in gut long term but in this Dutch study the evidence seems to rely on immunofluorescence data fro which they give no technical details. I spent a number of years using immunofluorescence in the days when we were beginning to understand the advantages and pitfalls of monoclonal antibody staining. As it stands I would not rely on the data presented here because pitfalls are so common that I would not rely on a technique unless it was based on a published validation study for the method.

    We also have a problem in that people with HLA-B27 may get their Reiter's features triggered by almost any intracellular infection they happen upon, so it is quite difficult to be sure that any bacteria that are found or to which there are antibody responses are actually specifically involved. I think there are too many unknowns here. Moreover, the Dutch study as it stands does not look to be statistically significant so it may be that one should not take too much note of it as a piece of evidence.

    I am not sure what to make of positive cultures. I am not clear just how frequently Yersinia is found anyway - being widespread in the environment. What may be important is whether or not they isolated specific pathogenic strains.

    All that said, I would not deny that if there are Reiter symptoms and there is a possibility that a triggering infection has not been treated then a course of antibiotic is reasonable. I am just sceptical about some of the claims for needing long term antibiotic therapy and in particular any suggestion that persistence of symptoms must indicate persistence of infection. In ankylosing spondylitis it seems likely that no infective trigger is needed. The clinical features are just programmed to arise in late teenage years by genetics.

    My suspicion about the worsening of ME following TNF inhibitors is that it may be part of a very non-specific sensitivity to environmental stimuli. It might also just be part of an immune response to the drug, which is common enough at least for adalimumab and infliximab. There was no indication of reactivation of any specific infection as far as I am aware. Ruling out infections in people receiving TNF inhibitors is essential but the ones we worry about are TB and fungal infections mostly.
     
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  18. msf

    msf Senior Member

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  19. msf

    msf Senior Member

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    Thanks for the reply, it was very enlightening as usual...I realise that the evidence is not strong enough to say categorically that it is the Yersinia causing the symptoms, or that it isn't, so I appreciate your caution with regard to long-term antibiotics. I hope one day there will be better techniques for demonstrating chronic infection, but I won't hold my breath.
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the problem of pitfalls of immunostaining come up again here. The abstract gives no mention of controls. The problem with a lot of monoclonal antibodies is that they will stain whatever you like. The fact that they are raised against a particular antigen does not mean that when they stain a sample the antigen is there. I have made that mistake myself and published it (in the same journal). It may be that Yersinia does hang around for years but this is not the way to prove it I think.
     

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