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Severe CFS Relapse After Campylobacter Infection

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by LillyME, Jul 6, 2016.

  1. LillyME

    LillyME

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    Hello,

    I am new here and before talking about my current situation I just want to introduce myself shortly.

    I am 37 years old and came down with CFS/ME in January 2013 with an acute onset of a respiratory infection. I was not completely bed bound but severely affected. Could go to doctors but had to rest. Orthostatic intolerance was very bad. Could only sit for a few hours. Had to quit my job for 9 month and could luckily return to work in October 2013. I would say I reached 35% of my former healthy level. I was able to work 80% but had to rest after work at home. Housework (grocery, cooking, cleaning ...) was done by family. My employer is only 2 min drive far away from my home but could not walk, had to go by car. At the weekend I could go for a walk for 30 min once a day, resting, doing light housework and meeting friends at home, cinema or restaurant but no shopping tours and or long walking was possible. I relied on my car.

    I was pretty much stable till march 2016. End of March I got an infection with campylobacter . My GP did not took it seriously and did not prescribe my antibiotics. Sadly the situation in Germany with regard to CFS/ME is not very good. Although my GP went with me through 2013, she seemed to forget that I am seriously ill. The campylobacter infection itself good better after 1,5 week, although cramps lasted for 2 weeks. But after 1,5 weeks permanent goosebumps started and I had the feeling something had started. I went to work but realized something had been triggered.

    In the beginning of May the first relapse of campylobacter came and I went downhill and could not work any longer. I persisted of a second stool sample but the second one was negative in comparison to the first one. And so I did not get any antibiotics. I rested at home and tried to get appointments with alternative doctors. But after 3 weeks the next relapse occurred. It was very mild but took me deeper into my CFS/ME. I had trouble to leave the house and just 2 weeks later in the beginning of June the 3rd minor relapse occurred and left my bedridden from one night to the other.

    Since June I cannot leave the house, I can shower only every two week, I have to lay down 23 hours and still my body is not recovering. I cannot speak for a long time. Cannot watch TV, read. Just on occasion got into the Internet with my smart phone. I am totally shocked to be bed bound do suddenly.

    I cannot go to doctors any more. I am totally reliable on my family.

    Since this situation my GP is overwhelmed and was now willing to contact the charité in Berlin (prof Scheibenbogen).

    First the charité said it makes no sense to take an antibiotics but now they say I should try ciprofloxacin although all stool samples with exception of the first one in the beginning of April are negative. All stool samples were done with antigen test EIA.

    I am now so afraid to take an antibiotics. I should have get it right from the beginning. But I don't now if I am benefiting from it now?

    Do you have any recommendation?

    I also could not find someone who got CFS or worsens after a campylobacter infection.

    Do you have other tips what could help me?

    I am so terrified that I am so suddenly bed bound since the 3rd of June, and I cannot get out for therapy.

    And even though I am lying in bed 23 hours my body does not recover and I wake up with exhaustion.

    Thank you

    Lilly
     
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Hi Lilly,

    It is frightening to be so disabled so quickly without much, if any, healthcare system support.

    I wish I had some suggestions for your situation.

    Your quote above is very powerful. And terrifying.

    Welcome to PR. We all wish we did not have to meet this way.

    Sending you good vibes.
     
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  3. sarah darwins

    sarah darwins I told you I was ill

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    X 2.

    Welcome, Lily.
     
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  4. NL93

    NL93 Senior Member

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    I am sorry Lilly. Do not loose hope. I too had a very very bad relapse 4 months ago. Went from sort of functional to 99% bedbound.
    But now my situation is improving again. I wear a pedometer and my activity level has tripled in 3 months. (300 to 1000 steps a day).
    I would suggest to listen to your body at all times. If you still feel like overdoing it when lying down 23 hours a day, then lay down 23,5 hours a day. If talking feels like too much, don't talk. I am not joking. Avoid PEM at any cost. That helped a lot for me.
    Hopefully things will improve again slowly. :)
     
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  5. Groggy Doggy

    Groggy Doggy Moved to S4ME.info

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    Welcome @LillyME

    Regarding Cipro, its a fluoroquinolone. I posted a reply to a thread here about the serious and sometimes disabling side effects of taking fluoroquinolones.

    GD :dog:
     
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  6. TigerLilea

    TigerLilea Senior Member

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    @LillyME I would recommend that if you do use an antibiotic that you do NOT use ciprofloxacin. It is known to severely disrupt the gut microbiome and has some very serious, and sometimes, irreversible side-effects. Anything in the Fluoroquinolone family of antibiotics should only be used as a last resort treatment. In fact, any antibiotic should only be used when absolutely necessary. I truly believe that had I not been put on any of the Penicillins I would not have CFS today.
     
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  7. msf

    msf Senior Member

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    Hi Lilly,

    My ME was triggered by Yersinia, which along with Campylobacter is one of the triggers of ReA. I think that some cases of ME are basically ReA without the immune reaction. I am still positive for Yersinia over 2 years later. I have had treatment for it, but these infections are hard to get rid of, particularly after the initial period. The thing that has made the biggest difference for me has been adopting the FODMAP diet - this immediately reduced most of my Yersinia-specific symptoms, and left me with just the general ME ones. The treatment may have helped too, but the dietary change had the most noticeable effect.

    I do not know much about Campylobacter, but I know that Yersinia is very hard to culture, particularly in chronic infection. Perhaps you should do some research to see whether this is true of Campylobacter before you decide whether to pursue treatment. The other thing to consider is whether the course you have been prescribed is likely to get rid of a chronic infection, if that is what you have. Oh, and are there any other tests for Campylobacter that show, or are supposed to show active infection? Perhaps you should try to get one of those done, if they exist.
     
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  8. TigerLilea

    TigerLilea Senior Member

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  9. LillyME

    LillyME

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    @NL93:

    The thing is I try to break the vicious circle and try to rest as much as possible. I go only to the toilet and back to bed or couch. But after 5 weeks everything starts to pain, my back, my shoulders, legs because I am lying down so much. So I move a little bit of get out of bed to get a tee but than I crash at night.
    So there is this problem I now understand that severely sick people have. 2013 I had enough scope to save energy but still to be active so that my body does not detoriate because of to much rest. I'm shocked that my muscles have reduced that much because of lying in bed for nearly 24 hours.

    I really ask myself how do people cope with that if this situation stays longer or even lifelong (I don't not want to think that way that terrifies me).

    Never in my life I new the decubitus but now I have to think about having a decubitus mattress.

    My GP prescribed me passive physiotherapy. So someone will come to my house and just mobilize my body. I hope it is not to exhausting.

    And my be I can pay out of my pocket an osteopath.

    The thing is my orthostatic is so bad. And I have this loud tinnitus in my ears which I only get when I am definetely pushed my self to much. And also a kind of vibration in the body. Mostly noticeable in hands arms and legs.

    And if I do a little not to much, for instance walking a little bit in my flat I get bone aches, burning bone aches in the lower legs and burning muscle aches in the upper legs. Same symptoms like 2013 but now after tiny movements.

    If anyone has tips how to cope with bed bound situation I would be so grateful.

    Thanks
     
  10. LillyME

    LillyME

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    @Groggy Doggy
    @TigerLilea
    @msf

    I have read that cipro is a strong AB That goes Deep into the tissue and can affect the central nerve system.

    So the thing is all my stool samples except the first one come out negative. But my be they are still there and something seems to trigger every 3 weeks my CFS/ME.

    Sometimes it can happen that campylobacter gets into the liver and gall bladder.

    But I do not now if campylobacter is an intracellular bacteria.

    I now somebody who got CFS after yersinia and also got RA. They can hide inside the cells.

    My be I try to talk with an inflectional disease department what alternative AB there are because of high risk with cipro.
     
  11. justy

    justy Donate Advocate Demonstrate

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    Hi Lilly, i'm so very sorry to hear of your awful situation. It can be a shock to be suddenly so ill after being more mildly affected. I also went from mild to severely affected 9although not permanently bedbound) about 7 years ago.

    I have since found that I have Lyme and other co infections that are chronic such as Cpn. As far as I can tell these infections can become chornic if untreated and then can lay dormant for years until a new insult comes along. In my case I was managing until I caught measles. Then the virus stirred up my immune system and it was overwhelmed and could no longer cope with the Lyme bart and Cpn as well as the measles and I became VERY sick.

    In the beginning the only thing that helped was aggressive rest therapy. sine then I have seen an ME spoecialsit and not much improvement yet, but I keep hoping.
     
  12. msf

    msf Senior Member

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  13. msf

    msf Senior Member

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    If you read the paper carefully, it does not say what percentage were Cipro-resistant, it just says that almost all of the 1% that were Erthromycin-resistant were also Cipro-resistant. So the percentage that are Cipro-resistant could be as high as 100%, or as low as 1%.
     
  14. msf

    msf Senior Member

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    As this paper suggests, it may be useful to consider which country you picked it up in. In this American study, 20% of the isolates were fluoroquinolone-resistant, but it was much higher in isolates from patients who had fallen ill abroad, many of whom had a resistant strain that has recently emerged in Europe.

    http://www.ncbi.nlm.nih.gov/pubmed/27199922
     
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  15. LillyME

    LillyME

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    @msf

    Intracellular does not sound good but bacteria are much bigger than viruses so even then they can go into a human cell?

    Well I don't know if there are other tests for campylobacter. It is possible to check if you ad antigen in your blood but mostly these are memory antigen.

    I did an LTT recently in May for clamydien pneumonia but this test came up negative. I have to check if there is something for campylobacter.

    I never heard of fodmap diet. Have to check out what it is.

    @justy

    So sorry to hear that you got worse after measles. I got a vaccination in the youth/child against measles. I don't know if that lasts for ever. So I guess you did not have a vaccination against it. So good to hear that you stay positive. I have to say I always admired people staying positive even if they are bedbound. I was afraid that this could happen to me Somewhere in the future but did not try to think much about when I was moderate. But now I have to say it terrifies me and really deep thoughts are crawling into my mind.
     
  16. LillyME

    LillyME

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    My stool sample campe back negative but the Infectionologist Said That does Not mean that there is no Campylobacter.

    They told me i could try Azithromycin. (Makroloid)

    Does anyone know if that is safer than ciprofloxacin.
     
  17. Groggy Doggy

    Groggy Doggy Moved to S4ME.info

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  18. Rvanson

    Rvanson Senior Member

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    Although I tend to agree with you about Cipro, but had it not been for Penicillin, I would have died as a child, who had a ruptured appendix. I have used oral penicillin's to clear up ear infections since I developed CFS/ME, and I didn't have a relapse due to that medication. But we are all different and what works for some of doesn't work for all of us.
     
  19. bertiedog

    bertiedog Senior Member

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    @LillyME I haven't read all the replies in this thread but wanted to pass on the most recent knowledge I have gained after regarding what can happen when you have had Campylobacter poisoning (I had this in 1998 very badly and given no antibiotics and developed ME/CFS by 2000 and had to stop teaching).

    The situation is that the bad bacteria from the original bug can change the gut lining and make it "leaky" so that proteins from certain foods can get into the bloodstream where it shouldn't be. The main one to do this is gluten but dairy is often a problem too. I am not sure if other foods have the same effect, all that I have read up on seems to be gluten and dairy. Through a process of molecular mimicry (which the doctor on here doesn't agree with) the immune system attacks these proteins all the time we are eating them. This can give us all the symptoms of a severe virus or infection, stuff like -

    aching, burning pains that move around the body, migraines and headaches, brain fog, memory issues, depression, anxiety plus massive fatigue, bloating, diahorrea or constipation etc

    Because the immune system is activated in this way it can go and attack various organs and glands especially the brain. Dr Datis Kharraziac has written books about the brain problems and also how the thyroid can be affected in this way and I would thoroughly recommend a read. I haven't read the one on the brain yet but I do have the thyroid one. He thinks genetics probably play a part as to what area of our body and brain are affected the most.

    These attacks could go on for years and in this case damage to the brain could be permanent if sufficient neurons are killed off. Neurotransmitters are hugely affected too issues with mood and motivation would be the result.

    Some integrative doctors think that for us to go down so badly with this type of food poisoning our bodies must have been in a weakened state for whatever reason and your story seems to confirm this as mine certainly does but I don't know if this is always the case.

    In order for the body to heal obviously it is necessary to take these foods out of the diet and things like digestive enzymes with each meal might be helpful for a while. I think it is pretty common for the HPA axis to be damaged by these immune system attacks and it might be necessary for the thyroid and adrenals to be supported so that healing can take place.

    I have improved hugely over the years but didn't get my energy back until I went gluten and dairy free but I also have to take thyroid and adrenal medication because my body was left untreated for probably 15 years or more and therefore there is some permanent damage but in your case you might well be able to stop this from happening.

    I do hope you can soon start to feel at the very least a little better but a Google search of Dr Datis books might well be helpful.

    Pam
     
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  20. msf

    msf Senior Member

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    Your Infectionologist (I like this term) sounds smart. If you look at one of the papers I posted the links for, resistance to macrolides was much less common (2%) than resistance to fluoroquinolones (20%). I took Azithromycin for a different reason, and although taking it would upset my stomach if I wasn´t careful with what I ate, the overall effect on the gut was less severe than that of the Moxifloxacin I took for the Yersinia infection.
     
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