Chlamydia Pneumonia with possible Porphyria

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WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 9/3/2017 8:19 PM (GMT -6)   
Does anyone have chronic chlamydia pneumonia / porphyria? Did it cause you to have worse herxes? Did you have strong sensitivities from it (mold, chemicals, or EMF)?

The reason I'm asking is a year ago, I saw a functional MD, who did baseline tests on me. I was tested for a bunch of bacteria/viruses like chlamydia p., mycoplasma p., EBV, etc. I had very high IGG titers on most of them, but the only one I had positive IGM titers for was chlamydia pneumonia. The doctor never addressed any of those things and when I asked about it a few months ago, she was not interested in digging deeper and acted like those tests were not how you diagnose those illnesses and they were just an indicator of the state of your immune system or something like that.

In the foreword of Buhner's Healing Lyme 2nd edition, Neil Nathan wrote something about Chlamydia Pneumonia and porphyria toxins that it produces and how it can cause what appears to be an extended herxheimer reaction.

goshawk
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Date Joined Sep 2016
Total Posts : 2115
   Posted 9/4/2017 4:22 AM (GMT -6)   
Bumping for more views

LymeDontKillMandysVibe
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Date Joined Sep 2017
Total Posts : 17
   Posted 9/4/2017 5:32 AM (GMT -6)   
Hello, I have Chlamydia Pneumonia. It's my "strongest" coinfection. I herx very badly and over the tiniest increases in meds/supplements that cause any die off. It also causes recurring pneumonia for me every september/october. I am having s flare right now. I find i have to be very careful what I breathe and my lungs can't handle any running, even like a super short distance. I carry an inhaler for emergencies.
I'm also very sensitive to mold, smells, chemicals, body products, food, anything that is fake or smells strongly.
I've had horror story experiences with normal MDs i can't recommend an LLMD strongly enough no matter how far or how much you have to pay. i'm in debt for a long time and travel 7 hours to see my LLMD but she's been a lifesaver.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 9/4/2017 7:13 AM (GMT -6)   
LymeDontKillMandysVibe,

THANK YOU so much for sharing with me. I do not get recurring pneumonia, but I do have all the sensitivities and I have not been able to tolerate so many things. I couldn't tolerate cholestyramine for mold treatment. I took minocycline for only 7 days and continued declining for 2 months after stopping it. I'm now on Buhner's herbal protocol and have to start at tiny doses and slowly work up.

After I got Buhner's book and read that foreword by Neil Nathan, lights went on and I thought that CPN might be my hiccup. I went to CPNHELP.org site, but it was kind of confusing to me. Anyway, I did find the info about the "poor man's" porphyria test, so I did that. My urine did not change color, so I kind of put it in the back of my mind after that. I do remember reading that the medical test for it is 2 parts - urine and stool. I believe the urine was for the water soluble porphyria and the stool for the fat soluble. I suppose I could still have fat soluble porphyria.

I hope to see an LLND soon. I've been in contact with her office and she agreed to help me. That's one of the first things I need to ask about.

I was working on Buhner's bartonella protocol and was having some improvements until I added Cordyceps. I don't know if I did too much too fast, or if it just triggered something, but I last took it one capsule on Thursday, and I'm still having toxin pain and heightened sensitivities.

I did have some kind of mild walking pneumonia around 1999. When I first got sick in 2009, the doctor who was trying to help me tested me for mycoplasma and I had antibodies for that back then. I assumed that was when I got mycoplasma. In 2015, I got the 2nd wave of illness after getting a contagious form of bronchitis. That illness triggered something like an autoimmune response and sent me on a nosedive into constant chronic Lyme symptoms. Between 2009 and 2015, the symptoms were just random and came and went and new ones appeared over the years. Since 2015, it's been non-stop.

Sorry for all the rambling.

All I know about treating CPN/porphyria is that strange diet. How have you treated yours? Did treatment help you any?

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4715
   Posted 9/5/2017 4:47 AM (GMT -6)   
I believe i had porphyria and vasculitis from a bactrim short course and i have cpn .houttynia and rifampin with either allicin or zith seem to hit it..i think bvt gets it too.
Glutithione and liver support has helped .on this site it give some awesome info . Cpn is a pleomorphic opportunistic intercellular bugger requiring different approaches to different forms (cough borrelia)
a friend with ms has both .they recommend a nac challenge if you get a herx something something
www.cpnhelp.org/cytochrome_p450_drug_inte

carbs and spirulina seemed to help

Kraken7777
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/22/2017 1:29 AM (GMT -6)   
Holy Cow. This is me!!!! Started combination minocycline with azithrmocyin on top of cefuroxime and I absolutely could not tolerate. GI symptoms severe nausea and vomiting and wheezing. I thought for sure my liver was shutting down. After trial and error and reapproaching this combination, I realize tonight I think it is all C. pneumoniae and porphyria. I read in an article that the three forms of the disease (not dissimilar to Lyme) require these three meds to hit everything simultaneously in order to get effective control and even then it can take over a year.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/15/2018 8:43 PM (GMT -6)   
Hey WBF, Did you ever get tested for Porphyria?

I just ran across this and it is something I should talk to my LLMD about.
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