Cpnhelp.org

First, I wanted to say I found reading this forum to be a great resource. I'm a little sad that it's not more active, but maybe that's an indicator that people are finding answers and getting help out in the real world or on the forum without having to ask many questions.

I've been dealing with many symptoms for a while and I've come to suspect some kind of stealth infection. I do have a few questions:

I've been tested via blood for chlamydia antibodies, would dormant or cryptic ctn or cpn show up on these tests? Some of what I've read indicates synovial fluid needs to be tested. I was positive for c.trach years ago for what it's worth, which is what landed me here

What are die off symptoms like and are they common? I was on doxycycline from my urologist who suspected a possible spreading prostate infection but after 8 days I had to quit. I was getting horrible night sweats, blotchy rash from my upper back and neck up into my head, burning electric fire from neck into head and from prostate area down leg into bottom of feet. Palpitations, flushing, sensation of blood being thick/full. I actually went to the ER the next day because the symptoms were so severe. Now I'm wondering if these were die off symptoms and I should not have stopped.

All tests have come back normal so far and I've seen many specialists including infectious disease, nothing has been found and blood work is *mostly* normal. What scares me is the intensity of some of these attacks, it feels like something is getting in my head and could get the best of me one day. Feels like I'm going to have to figure this out myself, so I greatly appreciate anyone willing to help by taking the time to reply.

Thanks

Your description does match some people's reports of die-off reactions. The thing to think about is, unless you're allergic to an antibiotic, there is no reason a 'healthy' body should have any reaction to an antibiotic. However, a 'sick' or infected body certainly would.

If an antibiotic encounters an enemy, it's going to basically do battle. The organism isn't going to accept being decimated without a struggle. In fact, most people feel worse the first day or two they're put on antibiotics for infections, with a short ten-day course of meds.

Now, Imagine you've got a full-body, long term infection, totally entrenched in your system. Of course you're going to feel pretty awful when the antibiotics start to do their job. Not only is the disease fighting for its life, literally, but the battle is creating inflammation in blood cells, organs and the circulatory system.
Add to that, the recirculation of dead and dying debris taxing your liver in particular. It can be pretty miserable, for weeks and months.

What were you prescribed?

Thank you so much for taking the time to reply.

I was prescribed doxycycline and levofloxacin, though I chose to only start with the doxy. I have no reference as to whether or not I'm allergic to it, all I can say is this was day 7 of taking 100mg 2x/day and I had no prior side effects. I've been told that I get a rash from amoxicillin since I was a kid, but that's all I know about my own allergies to meds.

I do feel like my body was full of toxins/sludge. My heart clearly does not work right for days after these flare-ups. I felt compelled to stop the doxy because of how my entire system was feeling at the time. Then I went on a very strict, low histamine, almost zero carb diet, and started taking antihistamines and mast cell stabilizers (just throwing the sink at it if it happened to be long covid). 3 days later I started feeling great, though I have no idea what worked. There's a good chance the abx were doing their job like you said and I shouldn't have quit them, I probably would have improved regardless. I have since flared again, about a week ago, and am still dealing with persisting symptoms that unfortunately the diet and histamine reducers don't seem to be fully addressing this time. I'm hoping I didn't introduce abx resistance if this is a bacterial infection. Been to many specialists including ID and still no one can find anything.

Do you have any advice on getting through the die-off? Any thoughts on tests I should ask for? It was absolutely intense but what's interesting is it's exactly where I usually feel symptoms. I just thought it was a flare.

Any other guidance or advice/thoughts would be greatly appreciated as well. Thank you

Hi, thanks again for the reply. I have read the protocol and I'm familiar with the variations, I do have doxy/azithromycin and flagyl. However, there has been no confirmed infection so far. We're just firing blind at this moment and I wasn't sure if it was wise to self diagnose/self treat. Continuing seemed like perhaps it could even make things worse at the time

I'm only taking 600mg NAC right now since it seemed to be giving me stomach issues. Besides that I'm taking quercetin, Vit A/C/D/K2. Occasionally taking EGCG, Curcumin, magnesium. Do you have any other suggestions? Thanks

I really appreciate the reply.

I agree with you on levofloxacin and that's why I chose to only start with doxy. I really cannot tell if I had die-off symptoms or if something else started working. After my terrible night of nerve pain, electric fire in head/legs/feet and terrible night sweats, I started feeling very good for about 3-5 days. Unfortunately after that, everything came back but I had already quit the ABX. Now it's tending to flare up and go away with no discernible trigger.

I'm really not sure what the correct path is here. I have no idea how to get a test that could verify a cryptic chlamydia infection or anything else. Right now they want to do a lumbar puncture and go from there, I don't understand why they can't just swab my sinus where I have consistent pressure and occasional leakage, the severity of which is linearly correlated to my other symptoms (Higher pressure = everything else is bad). It's frustrating. I suppose I could try doxy again and try to push through those horrible symptoms if they come on. 

Is it safe to take something like Allegra alongside doxy if that happened to be a histamine response?

Lumbar puncture can be useful if they test the CSF for the right things.  That is, the sort of infections that can be subtle long-term infections: Lyme, Cpn, Bartonella, and such.  If you test CSF that leaked into the nose, you may just be finding nose germs.  (Or nose-made antibodies to nose germs, if it's an antibody test.)

The Mayo Clinic now offers a test where they take a should-be-sterile sample and do 16S ribosomal RNA typing on it.  That tests not just for specific bacteria but for all bacteria, and figures out which species they are.  I'd be asking for it if I had a spinal tap done today (in addition to whatever tests the doctor wants to order).  Your doctor can mail them a CSF sample to be tested.

Anyway, what antibody tests for Cpn show if you have a chronic infection is elevated IgG and normal IgM.  What doctors will usually tell you is that it's just a sign you were infected within the last few years.  Which it could be -- but that pattern is also what you get from a chronic infection.