Positive for chlamydia pneumonia via PCR test: treatment experience?

[helen1]

My doc suggests treating with doxycycline for 6 weeks then pulsing Flagyl. What has been other members experience with treatment? It seems effective treatment is usually more complex than just doxy and Flagyl, is this accurate?

I would also much much rather not use abx, as I've been diligently treating and improving my gut health for almost 2 years and don't want to wipe out all that improvement. Is this highly unrealistic?
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Has anyone used herbals, high levels of Vit C, quercetin or other alternates for c pneumonia and to what effect?

Found this excellent interview part way down the page with a Dr A on intricate details of treating c pneumonia on this c pneumonia (cpn) site:
http://www.cpnhelp.org/taxonomy/term/44

I don't have overt symptoms i.e. no coughing, no asthma. Yes for fatigue, lots of phlegm, and other symptoms that may or may not be related to the c pneumonia.

I'm interested in hearing about anyone's experiences and info about c pneumonia. Thanks.

 

[minkeygirl]

I have a protocol I was looking at from the C pneumonia group (sorry can't remember thr name right now) which was
Mostly ABX and NAC. When I get in my computer I'll look for it.

I think it started out wih aziithromax then slowly added other ABX. I don't remember seeing flagyl. I don't think there was anything not an antibiotic in it.

I wonder if some of the herbals used for Lymes might work? I have no idea about that though.

 

[SOC]

I'm interested in hearing about anyone's experiences and info about c pneumonia. Thanks.

I tested positive for cpn by PCR. I was prescribed clarithromycin for 6 months which seemed to do the trick. I was taking Valcyte and Valtrex at the same time, which shouldn't have an effect on cpn, but I thought I'd mention it as it may have affected immune function or something.

 

[Sushi]

I used to test positive for C. Pneumonia but no longer do after taking GcMAF for some time.

There are herbal protocols for it also--I think Buhner has one.

Sushi

 

[helen1]

Thank you @SOC, @Sushi, @minkeygirl.

I started looking into Buhner's protocol and think I may buy his book, unless anyone has an idea for a better one.

Also what symptoms did you three have for cpn? In what ways did you improve after treatment?

GcMaf looks very promising; is it easy to get? Hard to take?

Thanks again.

 

[minkeygirl]

@helen1 Here's the link i was talking about. I don't know if I have symptoms as I generally feel like crap from my ME. I also have not started treatment for it. On my list to discuss with my doc next week. She is an NP so she may have some other ideas besides ABX which she does not like.

http://www.cpnhelp.org/home

 

[helen1]

I'm very interested to know what your NP suggests for your cpn @minkeygirl . Can you post them after your appointment? I'm seeing mine the week after that, so i'll post those and we can compare.

I've also got a referral from my gp to a specialist in c pneumonia, but don't know when i'll get to see her.

Yes, that's the same website I posted above , thanks.

 

[SOC]

Also what symptoms did you three have for cpn? In what ways did you improve after treatment?

I can't help with that. At the time I had a bunch of infections and a bunch of treatments, so I can't say which symptom was connected to which infection. We were just going by test results.

 

[minkeygirl]

I have tons of stuff to discuss with her but my infections in general is my list. I'm not sure if we'll get to it but if we do I'll post here.

 

[Sushi]

Thanks you @SOC, @Sushi, @minkeygirl.

I started looking into Buhner's protocol and think I may buy his book, unless anyone has an idea for a better one.

Also what symptoms did you three have for cpn? In what ways did you improve after treatment?

GcMaf looks very promising; is it easy to get? Hard to take?

Thanks again.

I can't differentiate between ME symptoms and C. Pneum symptoms, so I don't really know.

And that means that, though GcMAF definitely brought improvement, its action is in enhancing immune function so I can't pinpoint whether its attack on P. Pneum or on combinations of other pathogens I am positive for, brought the improvement.

It is easy to get if your doctor supplies it! Somewhat harder and more expensive if you have to order it on the open market. It is easy to "take"--one small injection per week with an insulin syringe.

Best,
Sushi

 

[helen1]

Thanks @Sushi. Does the GcMAF cause a lot of die off?

 

[Sushi]

Thanks @Sushi. Does the GcMAF cause a lot of die off?

At an appropriate dose, it shouldn't. I didn't have that problem, but some doctors give too high a dose not understanding about ME/CFS.

Sushi

 

[Violeta]

Here's a study that says that betulin is good for c pneumonia. Betulin can be found in chaga mushroom.

http://www.ncbi.nlm.nih.gov/pubmed/20615390

Here's a link that names some herbs that contain betulinic acid.

http://goodbyelyme.com/free_articles/coinfections/chlamydia

 

[helen1]

Wow. Very helpful @Violeta. Have you used the plants mentioned and if so what happened?

Has anyone else tried betulin, chaga mushrooms, ligustrum seed or lotus rhizome node for c pneumonia or improving the immune system more generally?

 

[Violeta]

@helen1, I did not get tested for c pneumonia, but my recent really bad chest cold has made me think I have it. I've been coughing for 5 weeks now. I've actually been coughing for years, but didn't pay attention to it. I used to have bad episodes every fall. Information at one site makes it sound like it can cause issues in other parts of the body, too.

I have some chaga extract and betulic extract that I bought last fall but didn't use because the reishi in was taking seemed to make me feel better. After reading about chaga and betulic acid last night I took a dropper of each. I woke up with an awful familiar headache, neck pain, stiffness, cold/hot, watering eyes, going to die feeling. So heads up! If you try it, go slow!

 

[Violeta]

@helen1, I found some posts by someone using the Buhner protocol for cpn under the user name sphinx at cpnhelp.org. He/she posted a 5 month update with good results. He/she had been on abx for years but had to quit because of gut issues, and had better results with the herbs than with the abx.

In one of the posts, sphinx said that he/she bought herbs to boil a decoction because of unavailability of the tinctures in Europe. I may have to do that to make it more affordable.

 

[helen1]

Yes I've learned the hard way too, start low, go slow... But I appreciate the warning, and it's good for anyone else who hasn't learned the hard way yet to hear it.
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Are you going to back off but keep taking them? Are you planning on adding the other herbals on Buhner's list? I'm going out today to see which of them I can find at my local stores; if no luck, I'll order from iherb.

Very encouraging to read Sphynx's experience. And interesting in a bad way that although he supplemented with lots of bifodo probiotics, the abx still wiped out all his gut bifido. It emphasizes the need to try to stay off abx if alternatives are viable.

 

[Violeta]

I'm still going to take them, but only 5 drops of each at a time. I'm already drinking chanca piedra tea and taking a couple of drops of teasel a day. I just remembered, yesterday I drank some cat's claw tea that I had made last week but stopped taking because of the most horrible herx, so it could have been the combination. I'll have to experiment.

Let me know what you find. I usually buy herbs from mountainroseherbs, and they have a few of the ones sphinx listed, but not all of them. Some of them might be difficult to find except in ready made tinctures.

I bought some sarsaparilla and have been drinking some of the tea at night, and I think that helps reduce herx and help with sleep. I shouldn't start anything new, but I'll start looking around.

 

[helen1]

Interesting @Violeta; chanca piedra, sarsaparilla and teasel are not on Buhner's protocol or are you trying to address several infections? Where did you get the idea for those?

I bought some chaga today for the luteolin and already had reishi and Japanese knotweed/resveratrol.

I tried a little reishi yesterday and today and have been taking the resveratrol for a couple of months already. I'll try a little chaga tomorrow and build up low and slow.

 

[Violeta]

@helen1, I am taking these because my initial focus was on Lyme. Someone here told me about teasel; cat's claw along with pau d'arco rotated with chanca piedra were something I had read about in several places long ago. I also just this past week bought Dragon's blood because of reading the Synergy Protocol that someone from a Lyme forum told me about. I really should try to see where these herbs will get me.

When I started looking into Lyme(this is not the first time, though) I didn't think coinfections were important. But actually my lung issue is the worst symptom. Other symptoms of c pneumoniae that I found today are symptoms that I've had, too. I had read at the site you mentioned cpnhelp.org last year because of porphyria symptoms, but never thought about the possibility if having the c pneumoniae. Symptoms can be a real blessing when the right information is placed in front of you at the same time.

I think the herbs for Lyme will help somewhat. Tonight my coughing came back; the sarsaparilla tea didn't help. Adding some dragon's blood to helped really quickly.

How are you feeling?