The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Chlamydia pneumoniae - maybe? Help!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by JaimeS, Aug 6, 2015.

  1. JaimeS

    JaimeS Senior Member

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    Hi, all!

    I was recently diagnosed with CP by KDM, and feel that it is responsible for at least part of my symptoms.

    That said, I am having a very unusual symptom and I was wondering if you all knew whether or not it was related. Just since starting probiotics and lactoferrin - no abx yet, even - breathing symptoms seem much worse. (The apparently CP-typical dyspnea that is very air-hunger-like.) Today I took a break from the probiotics because my herx was getting a little untenable and I needed a 'rest day' to recover, but I took 20 drops of GSE in water over the course of the day just to keep kicking some a$$.

    I had been noticing that my left side was achy, and it felt like I pulled a muscle in my neck yesterday. Then today, I realized that ache was traveling down to my side, right over the lungs. Over the course of the day I realized it felt more like I'd been bruised than like I had pulled something far up that was yanking other things out of alignment. Like I'd been poked in a few spots with a sharp stick. I pressed against my ribcage and not only does it hurt in certain places over the lungs, but I can feel distinct little lumps just below the skin, none larger than the flat of a pencil eraser, some much smaller. There's a little cutaneous cross-hatch in microcirculation above each one, though I had to eye my skin very carefully and press a few spots where I thought I saw that before I confirmed they were associated with one another. It's very subtle.

    So far as I'm aware, this is too low to be swollen lymph nodes.

    TELL me that isn't CP in little pockets over my LUNGS. Holy crap.

    Has anyone noticed anything like this? I'm not in screaming agony or anything, but it aches - and burns, just a little - and I'd be lying if I said I wasn't freaking out just the tiniest bit.

    Oh, and just for kicks, my tick bite reappeared in the exact same place. [Edit: not in the same place as the lesions, in the same place as it had initially appeared.] I'm glad either the lactoferrin, the probiotic or both is kicking my immune system into gear, but also #()*)(#*$!#!~. ANY INFO would be helpful, because I cope through research.

    -J
     
    Last edited: Aug 6, 2015
  2. JaimeS

    JaimeS Senior Member

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    Everything is on Phoenix Rising. Everything. This place is amazing.

    Unfortunately, while I've got a lot of people on that thread going, "hey, me too!" there's nothing to indicate what could be causing it, really. Still, I'm glad to know that it's probably not going to kill me or anything. And of course, one thinks, "lumps? Cancer!" but even brain-fogged and creeped out, I figure that cancerous lesions don't tend to appear literally overnight. :p

    Still, I'd love to hear some speculation if anyone has any up their sleeve, as to what is causing this...

    -J
     
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  3. JaimeS

    JaimeS Senior Member

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    Sorry to poke at you guys several times in a row, but it looks like both the reappearance of the tick bite and the nodules could be due to Bartonella die-off. So, they're little nodules of Bartonella, rather than little nodules of CP?

    A moderator at prohealth says,
    This was in the context specifically of people talking about lumps between their ribs.

    The article here states that Bartonella has subcutaneous lesions as one of its primary symptoms. Sorry, guys, should be a blog post and not a forum post, it appears. :(

    Still, competing theories or 'me toos' are valued.

    -J
     
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  4. Hutan

    Hutan Senior Member

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  5. msf

    msf Senior Member

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    Did you say your tickbite reappeared?
     
  6. justy

    justy Donate Advocate Demonstrate

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    I have those painful lumps come and go on left side ribs by lungs also...I have Cpn and Bartonella.

    Do you have Histamine issues? thought I read somewhere you did? which might explain the breathing problems on probiotics - some people with MCAS can't tolerate probiotics. Will find link.
     
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  7. justy

    justy Donate Advocate Demonstrate

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  8. JaimeS

    JaimeS Senior Member

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    I did. Same spot. No chance it was a second bite - the pattern of inflammation was even identical.

    This is the first time I've been really convinced that my illness is the result of multiple bites. That bite was less than a year old, but my illness is definitely older. I thought it might be a spider bite or something, because it wasn't 100% tick-characteristic; but it did form a halo around the bite, even if it wasn't quite a 'bull's eye'.

    Thanks, Hutan - already started watching! :)

    -J
     
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  9. JaimeS

    JaimeS Senior Member

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    Justy and Jaime - symptom twins! :lol:

    Seriously, you and I have the same everything!

    Anyway, I definitely commented that I had more trouble breathing on these probiotics, but I also assumed that was because they were messing with the CP population. I got lactate-free probiotics because I thought that, too, was part of the problem. I'd have no idea if I had histamine issues, though I feel like I researched this at one point. How do you tell?

    [Edit: the kind of probiotic I take is, according to the article you linked, particularly low-histamine.]

    -J
     
    Last edited: Aug 7, 2015
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  10. msf

    msf Senior Member

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    When I googled it, I found one case report of a recurring Erythema Migrans, supposedly in the absence of reinfection. This phenomenon doesn´t seem to be well documented when compared to recurring Erythema Nodosom in chronic Yersiniosis. Perhaps you should take a photo this time, and if it happens again any sceptical doctor is going to have to go for the ´total coincidence´or ´it could be anything´ line of argument.
     
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  11. Starlight

    Starlight Senior Member

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    Hi JamieS. I was just diagnosed with CP this week too. I think I've probably had it quite a long time as I have very high antibodies. I've had years of problems with asthma and allergies since I've got sick too although those have been mild compared to how incredibly ill and disabled I've been by the sick feeling and exhaustion.
    I'm not attending KDM unfortunately , I was wondering if you would mind telling me what antibiotics you were prescribed? I have been put on Azithromyciny and Rifampicin.but I haven't yet started them. I think it'll take 6-8 months . I was wondering what KDM suggests the prognosis is, has he told you how long you might require treatment? I'm a bit nervous about starting them.
     
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  12. msf

    msf Senior Member

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    Hi Starlight, the combo you have been given was one of the combos given to patients with CPn and Ctr-triggered Reactive Arthritis in this placebo-controlled trial

    http://www.ncbi.nlm.nih.gov/pubmed/20155838

    The Azithromycin-Rifampcin combo seemed to work better than the Doxycycline-Rifampcin combo, and response to it was associated with PCR testing becoming negative (suggesting clearance).
     
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  13. celeste

    celeste

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    For anyone who hasn't found it, there's lots of info about treating Cpn at cpnhelp.org
     
  14. JaimeS

    JaimeS Senior Member

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    By now I've learned. Pics of everything, including initial bite, too.

    [Edit: and when I looked back at the old picture, I saw it was dated 'Dec 2013' in my phone. Wow, did I ever underestimate how long ago that was! That was when I was sickest, though, so it makes sense - that part of my life is a complete blur. I'm shocked I remembered I took a photo at all.]

    -J
     
    Last edited: Aug 8, 2015
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  15. JaimeS

    JaimeS Senior Member

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    I'm not sure KDM's recommendation is really for the CP - he said he was going to start with the gut, for me. CP appears to require an alternating course of three different classes of abx in order to address the three different stages of the microbe's little life cycle. I'm starting with Ornidazole, which may also kill one of the three, but I think that's coincidental.

    -J
     
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  16. JaimeS

    JaimeS Senior Member

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    I've really only come from my first appointment with him, which was before I had done most of the important testing. We haven't yet spoken of 'how long', and I'm not sure it's realistic to be so specific. Everyone recovers at different rates and has different responses to helpful meds.

    I'm encouraged because my immune response appears to be... robust. I'm discouraged because I hear over and over again that recovery is measured not in weeks or months, but in years. Bartonella and CP in particular seem like devious little suckers. Both are intercellular pathogens - at one point they thought CP was a virus instead of a bacteria - and they seem happy to hide out for months or even years before being reactivated by... who knows? When the moon is in the seventh house? It's not very encouraging.

    Come to think, though, perhaps there is something to that whole reinfection thing. Perhaps when we believe it's eradicated, it really is, but we're still surrounded by the thing that got us the first time, whether that's ticks or, in Bartonella's case, fleas, cats, spiders, groundhogs... life, apparently. And we have some kind of genetic propensity or vulnerability that makes us not quite able to fight it off.

    Still, even with that taken into consideration, it's still a long while until primary recovery. I hate the idea of how far it stretches on into the distance, too, @Starlight . It's not a nice thought.

    However, it is better than sitting on our hands and hoping. And I have to say, I'm definitely noting an immune response, so I must be doing something right.

    BTW, nodules disappeared almost completely, overnight. I resumed the probiotic last night, and feel like stopping it might have been part of what caused the renewed outbreak in the first place? I've switched to probiotic at night and GSE in the AM. Kill everything with fire, re-populate; kill everything with fire, re-populate.

    Hang in there, everyone.

    -J
     
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  17. Starlight

    Starlight Senior Member

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    Thanks so much for posting , this it has really given me heart tonight. I've never heard of CP before this week. After 10 years ill I would be so happy if it were even a part of the puzzle I could hope to solve, any relief would be heaven. Really encouraging to think I'm on good stuff so I'm very grateful to you.

    Thanks very much to Celeste and JamieS too, I'm sorry I can't figure out how to multiquote a few posts and am so beyond tired tonight!
    Jamie I hope you'll have success with your treatment, thanks so much for generously sharing your experience and knowledge.
    The three of you have really been a great help today.
     
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  18. AndyPandy

    AndyPandy Making the most of it

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    Just sharing what has happened to me with CP. I tested low positive for a current infection about 12 months ago. I was prescribed Doxycycline but didn't take it as I just wasn't robust enough to cope with it.

    Dr and I decided to try to improve my immune system and get methylation going first. Six months after the initial test I retested as negative for CP. This was before starting methylation. Not sure if this means my body has fought it off or something else. I will ask for another test in a few months.

    Best wishes Andy
     
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  19. celeste

    celeste

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    Wishing you well, @Starlight. It sounds as though you are now heading in the right direction.
     
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  20. celeste

    celeste

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    @AndyPandy - hoping your immune system has managed to fight it off.

    I test negative for antibodies though, because so many years of Cpn and borrelia infection have suppressed my immune system. Probably worth still keeping Cpn in mind, if you still have symptoms.
     

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