Need help understanding Clamydia Pneumonia test results

[Gingergrrl]

To make a long story short, I was initially tested for everything under the sun back in July by my CFS specialist. My C.P. test had a positive IgM of 1:80 with the cut-off for a negative result at 1:10. So it was slightly high but not ridiculously high like all my EBV tests.

My Dr. felt it was a false positive (b/c I did not have the symptoms of C.P.) and that we should re-run it. Well, the first time we tried to re-run it, the lab skipped the test entirely and the second time, they accidentally ran the wrong test!

I tried a third time (and lab finally got it right!) and the C.P. IgM came back as 1:20 which was lower than the first test but still just slightly higher than the 1:10 negative cut-off. My Dr. (who I trust and is very, very experienced in infectious disease) said that he was convinced the result was insignificant and that I did not have C.P.

To put it in context, I had a negative chest x-ray, no congestion or asthma type symptoms, and it just doesn't match up. I do have significant shortness of breath but it is more a feeling as if I'd just run up a flight of stairs (like a breathlessness feeling) and I do have tachycardia but it seems to all be autonomic and part of my overall ME/CFS.

I am confident with his assessment but was wondering if there were others who either had C.P. (and what your symptoms were?) or had a slightly positive C.P. IgM test that was similar to mine and how it was interpreted?

Thank you in advance for any info! I guess I didn't make the story short after all...

 

[AndyPandy]

To make a long story short, I was initially tested for everything under the sun back in July by my CFS specialist. My C.P. test had a positive IgM of 1:40 with the cut-off for a negative result at 1:10. So it was just slightly high but not ridiculously high like all my EBV tests.

My Dr. felt it was a false positive (b/c I did not have the symptoms of C.P.) and that we should re-run it. Well, the first time we tried to re-run it, the lab skipped the test entirely and the second time, they accidentally ran the wrong test!

I tried a third time (and lab finally got it right!) and the C.P. IgM came back as 1:20 which was lower than the first test but still just slightly higher than the 1:10 negative cut-off. My Dr. (who I trust and is very, very experienced in infectious disease) said that he was convinced the result was insignificant and that I did not have C.P.

To put it in context, I had a negative chest x-ray, no congestion or asthma type symptoms, and it just doesn't match up. I do have significant shortness of breath but it is more a feeling as if I'd just run up a flight of stairs (like a breathlessness feeling) and I do have tachycardia but it seems to all be autonomic and part of my overall ME/CFS.

I am confident with his assessment but was wondering if there were others who either had C.P. (and what your symptoms were?) or had a slightly positive C.P. IgM test that was similar to mine and how it was interpreted?

Thank you in advance for any info! I guess I didn't make the story short after all...

I have just been diagnosed with C.P.

I am too sick with a virus on top of everything else to reply in detail just now and will PM you when I can.

Best wishes Andy

 

[Gingergrrl]

Thanks Andy and look forward to hearing from you when you feel up to it. Take your time and please rest and feel better soon.

 

[celeste]

@Gingergrrl It might be worth asking on the Cpnhelp.org forum, as there is lots of info there.

 

[Gingergrrl]

@celeste I looked at that site but I can't find anything that lists what the symptoms would be? I tried a google search but can't find anything about what symptoms would look like and now I am starting to get more concerned!

 

[Sushi]

@Gingergrrl

I actually remember having C. Pneum when it was acute. The "after" symptoms are difficult to pin down as they are similar to both ME and Borrelia symptoms.

After a couple years of ME treatment I no longer tested positive for C. Pneum--for what that is worth!

Sushi

 

[Tired of being sick]

To put it in context, I had a negative chest x-ray, no congestion or asthma type symptoms, and it just doesn't match up. I do have significant shortness of breath but it is more a feeling as if I'd just run up a flight of stairs (like a breathlessness feeling) and I do have tachycardia but it seems to all be autonomic and part of my overall ME/CFS.

Your comment on being SOB even though you had no visible problems from the tests..

Is is exactly what I went through about 2 years ago telling the doctor I get SOB with minimal exertion and I'm not imagining this!!

So long story short I now know I have POTS witch causes SOB ,breathing deregulation.and inability at times to draw a full breath. I have to put pressure on the center of my abdomen just below my rib cage(only while laying on my back though) which i believe is from bloating which is part of POTS as well.......

the fact minimal exertion such as taking a shower sends my heart rate dangerously higher than a professional athlete running the Boston Marathon!

so of course I'm going to be SOB...

Everything that the Vagus nerve controls in my body is SNAFU!!!

 

[DanME]

Hi,

I ve looked up Chlamydia Pneumonia testing and this bacterium is a tricky, little beast. As you probably know, it is an intracellular bacterium, which infects the epithelium of the respiratory tract. Acute infections create usually a mild sore throat and croakiness, sometimes you get a sinusitis or an atypical pneumonia with a low level fever, a dry cough and shortness of breath.

The prevalence of infection in the adult population is quite high (50-70%) and the infection often stays dormant for a long time. An acute or recent infection usually goes together with an IgM higher than >1:20 and an IgG higher than >1:512. There is a lot of discussion around, if a chronic infection with CP could trigger Asthma, Arthritis, Heart Attackes, MS and of course ME. How to test a chronic infection with CP seems to be quite controversial, because PCR and cultivations often fail. But again the IgM should be higher than >1:20 (according to a study from Isreal with over 800 participants).

In my opinion your shortness of breath and your tachykardia are autonomic issues and your IgM is at the border of significance. You could test it again. Maybe at your GP around the corner. But I highly doubt CP causes any of your symptoms. I think you can trust the experience of your Dr.

 

[Gingergrrl]

@Gingergrrl I actually remember having C. Pneum when it was acute. The "after" symptoms are difficult to pin down as they are similar to both ME and Borrelia symptoms.
After a couple years of ME treatment I no longer tested positive for C. Pneum--for what that is worth!

@Sushi Do you mean that you remember having an actual case of pneumonia in which you tested positive for C.P. during the infection (vs. that you tested positive for C.P. years later along with all of your other ME related blood tests?)

Also, when you said after a few years of ME treatments, you no longer tested positive for C.P., which treatments do you think made a difference in this regard? I am definitively negative on Borrelia and my main treatment is Famvir for EBV (now taken for over 40 days.)

Also, did you have a high IgM titer for C.P. or just IgG? Strangely enough, on both tests my IgG was negative and only the IgM positive. I have not seen the results yet and asked my Dr for a copy (and asked some other questions- but don't know the answers yet.)

 

[DanME]

Your comment on being SOB even though you had no visible problems from the tests..

Is is exactly what I went through about 2 years ago telling the doctor I get SOB with minimal exertion and I'm not imagining this!!

So long story short I now know I have POTS witch causes SOB ,breathing deregulation.and inability at times to draw a full breath. I have to put pressure on the center of my abdomen just below my rib cage(only while laying on my back though) which i believe is from bloating which is part of POTS as well.......

the fact minimal exertion such as taking a shower sends my heart rate dangerously higher than a professional athlete running the Boston Marathon!

so of course I'm going to be SOB...

Everything that the Vagus nerve controls in my body is SNAFU!!!

I have exactly the same problems. POTS, SOB and if I shower, my heart rate sykrockets. Have you tried to shower cold or coldish? The warm water opens all your skin vessels and the blood is drawn to the periphery, which makes POTS and SOB a lot worth. I only shower coldish now and my heart rate stays lower and I feel much better. Everthing which opens your skin vessels is a nightmare, like sunny and hot weather, a hot shower and a sauna.

 

[DanME]

@Sushi Do you mean that you remember having an actual case of pneumonia in which you tested positive for C.P. during the infection (vs. that you tested positive for C.P. years later along with all of your other ME related blood tests?)

Also, when you said after a few years of ME treatments, you no longer tested positive for C.P., which treatments do you think made a difference in this regard? I am definitively negative on Borrelia and my main treatment is Famvir for EBV (now taken for over 40 days.)

Also, did you have a high IgM titer or just IgG? Strangely enough, on both tests my IgG was negative and only the IgM positive. I have not seen the results yet and asked my Dr for a copy (and asked some other questions- but don't know the answers yet.)

Strange. With a chronic infection IgG should be way higher than IgM. May I ask, how high your EBV levels were? I still hope Famvir helps!

 

[DanME]

In case you have again an unsual CP test, a three weeks round of antibiotics should get rid of all the bacteria.

 

[Tired of being sick]

I have exactly the same problems. POTS, SOB and if I shower, my heart rate sykrockets. Have you tried to shower cold or coldish? The warm water opens all your skin vessels and the blood is drawn to the periphery, which makes POTS and SOB a lot worth. I only shower coldish now and my heart rate stays lower and I feel much better. Everthing which opens your skin vessels is a nightmare, like sunny and hot weather, a hot shower and a sauna.

Due to my chronic back and neck pain I have to take a hot shower..

So i will willingly trade my high heart rate SOB for the pain relieving hot aqua therapy..

When I go to wash my lower extremities i almost pass/choke myself out..

So I try to wash very quickly down there which sends my heart rate to extremes but for not as long which long would most likely put me out cold....

 

[Gingergrrl]

@DanielBR

I ve looked up Chlamydia Pneumonia testing and this bacterium is a tricky, little beast. As you probably know, it is an intracellular bacterium, which infects the epithelium of the respiratory tract. Acute infections create usually a mild sore throat and croakiness, sometimes you get a sinusitis or an atypical pneumonia with a low level fever, a dry cough and shortness of breath.

God bless you, that was so kind of you to do some research on CP for me! Which websites did you find the most useful? I've been really ill the last two days and my brain is not absorbing anything I'm reading on CP on Google. I know nothing about the bacteria b/c until today, I never thought it was a factor for me and now I am afraid it might be .

In Jan 2013 (almost a year after having mono/EBV in 2012) I got an unknown respiratory infection (viral or bacterial- I do not know?) with bad cough and congestion in lungs. I could not breathe (due to infection- totally different than current breathlessness and POTS stuff) so my husband took me to Urgent Care. They gave me cough medicine with codeine and I got better. However, two weeks later my tachycardia began and I've gone downhill ever since. The month before (Dec 2012) my husband had pneumonia and was very sick. But he was totally better by the time I got sick and I was not as sick as he was. But now I wonder if that infection was C.P.?

The prevalence of infection in the adult population is quite high (50-70%) and the infection often stays dormant for a long time. An acute or recent infection usually goes together with an IgM higher than >1:20 and an IgG higher than >1:512. There is a lot of discussion around, if a chronic infection with CP could trigger Asthma, Arthritis, Heart Attacks, MS and of course ME. How to test a chronic infection with CP seems to be quite controversial, because PCR and cultivations often fail. But again the IgM should be higher than >1:20 (according to a study from Isreal with over 800 participants).

My first IgM was 1:80 and the re-test almost two months later was 1:20. My IgG was under 1:64 both times which is considered negative by the lab and by my Dr. I've never had asthma or any chest issues other than that infection in Jan 2013, and all my life I had throat infections and tonsillitis. I am not sure if I had a PCR test for C.P. but for the second go-round, my Dr asked for the entire Chlamydia and Chlamidophilia Panel (not sure what this entails) but will know once I get a copy.

In my opinion your shortness of breath and your tachykardia are autonomic issues and your IgM is at the border of significance. You could test it again. Maybe at your GP around the corner. But I highly doubt CP causes any of your symptoms. I think you can trust the experience of your Dr.

I tend to agree with you that my symptoms are autonomic as part of my overall ME/CFS and the IgM is on the border of significance. My doctor (when it was 1:80) said he felt it was a "false positive" and with the second test of 1:20 IgM he felt it was insignificant. I trust him fully, but have a tendency to freak myself out over all this stuff. I don't have a current GP but am thinking about asking my ND to test me (and she uses a different lab.)

Part of the reason I am so concerned is that the last two days, I have the return of what I call the "Sickly fatigue" where I feel feverish, alternate freezing/hot, shaky, muscle aches and feel a mono level of fatigue. My tachycardia is worse and today quite high even with the Atenolol. For the majority of my time on Famvir, the sickly fatigue was gone and I had thought it was gone forever but now it is back. But if I have C.P. I have had it all along so that can't be the explanation.

My Dr. ran some other blood and urine tests after my over-methylation episode but none of them are back yet. He took me off thyroid med for two weeks and I went back on it today (even though results not back- with his permission of course) and wondering if this is somehow related? This lab is awful b/c a thyroid test should be back in 1-2 days.

Sorry to type so much, I am just scared b/c I feel so sick today. I wanted to add that the last thing on earth that I want to take is antibiotics after what happened to me with Levaquin so the fact that my Dr. does not think the C.P. is significant was good news to me. I just have the kind of brain that wants to understand exactly why it was not significant b/c the first test w/IgM 1:80 is positive for active infection according to all the websites I've looked at!

 

[Sushi]

@Sushi Do you mean that you remember having an actual case of pneumonia in which you tested positive for C.P. during the infection (vs. that you tested positive for C.P. years later along with all of your other ME related blood tests?)

Also, when you said after a few years of ME treatments, you no longer tested positive for C.P., which treatments do you think made a difference in this regard? I am definitively negative on Borrelia and my main treatment is Famvir for EBV (now taken for over 40 days.)

Also, did you have a high IgM titer for C.P. or just IgG? Strangely enough, on both tests my IgG was negative and only the IgM positive. I have not seen the results yet and asked my Dr for a copy (and asked some other questions- but don't know the answers yet.)

I don't know the answer to a lot of the above. I was told the I had "pneumonia" at the time of the acute infection, but I wasn't told what type of pneumonia it was. I am assuming it was C. Pneum because later I had fairly high titers for it. I have had too many years of tests (I've been tested for various pathogens for about 15 years now) to go back through them to look for the exact titers and, while I'd guess they were IgG, I don't remember for sure.

Also, I don't know what treatments made a difference as I was getting immune treatment, antibiotics, antivirals and other types of treatment. I just know that the latest testing was negative. I said, "for what it is worth," because we know that when the immune system is dysfunctional we may not be able to produce antibodies normally which puts the whole testing process in question (unless you are positive by PCR).

I don't think any of us can say for sure that "I am definitively negative on Borrelia," because testing (even the best) brings way too high a percentage of false negatives. There is way too much that we can't say for sure, sadly!

Sushi

 

[helen1]

I tested positive for c.pneu via PCR testing a few months ago. I have few of the possible symptoms: fatigue, raspy throat sometimes, lots of sputum sometimes, but no unusual shortness of breath. Of course those could all be caused by many other things. According to my research, other symptoms of c.pneu include brain inflammation, decreased vision, sore throat, hoarse voice as well as no pneumonia type symptoms at all.

Also, diagnosis is particularly tricky. The following goes through all the pros and cons of testing and diagnosis, including the fact that PCR testing is not definitive:
http://www.cpnhelp.org/diagnosis_issues

If it's been present a long time, it migrates away from the lungs into many other tissues in the body, hovering especially in the mitochondrial membrane unfortunately.

Have been debating doing nothing in case my lab result was wrong or if the lab is correct, just hope it goes away like Sushi's apparently did, or do something. I've ordered transfer factor plasmyc and will probably try a small amount for a few months if I tolerate it. Haven't wanted to do abx thus the transfer factor on the advice of my doc.

 

[DanME]

@Gingergrrl

No worries! I like to feel useful. For an overview I usually use Wikipedia. Then I look further into the topic by searching special sites made for doctors. We have several here in Germany. Then I search Pubmed for reviews and special studies. If that is not enough I google for very special information. Rarely I look topics up in my medical books from med school, but the internet is almost more informative in every way. Often topics in medicine are not very clear, but quite controversial. Like at what point do you have a chronic infection with C.P. I found one study and one review stating the mark should be IgM over 1:20. That is usually the point, when practical experience comes into the equation. I don't have a lot of practical experience (thank you ME), but it is very important. You cannot only relay on theory and studies in medicine. That is why I said, you should trust Dr. K. He has portably seen a lot of artefacts in his career and knows how to handle them. Artefacts are more common than you think in diagnostics. There are not rare.

There are hundreds of viruses and bacteria, which are able to cause respiratory infections and pneumonia. So is probably wasn't C.P. By the way Levaquin is able to eradicate C.P. How long did you take it?

 

[Gingergrrl]

@Sushi, @helen1 and @DanielBR Thank you for all the info, I really appreciate it. I only slept about four hours last night b/c I have so many different things on my mind so hopefully this will be coherent!

I was told the I had "pneumonia" at the time of the acute infection, but I wasn't told what type of pneumonia it was. I am assuming it was C. Pneum because later I had fairly high titers for it. I have had too many years of tests (I've been tested for various pathogens for about 15 years now) to go back through them to look for the exact titers and, while I'd guess they were IgG, I don't remember for sure.

I don't know what treatments made a difference as I was getting immune treatment, antibiotics, antivirals and other types of treatment. I just know that the latest testing was negative. I said, "for what it is worth," because we know that when the immune system is dysfunctional we may not be able to produce antibodies normally which puts the whole testing process in question (unless you are positive by PCR).

Sushi, thank you and I wouldn't expect you to remember from 15 yrs worth of pathogen testing! But you did answer my question in the sense that you were diagnosed with actual pneumonia at one time whereas I was not. I also understand what you mean by "for what it's worth" as I know none of these tests are fully reliable in a PWC due to our crazy immune systems. As far as I know, I did not have a PCR test for CpN but am waiting for all the results to be sent to me (hopefully today!)

I tested positive for c.pneu via CPR testing a few months ago. I have few of the possible symptoms: fatigue, raspy throat sometimes, lots of sputum sometimes, but no unusual shortness of breath. Of course those could all be caused by many other things. According to my research, other symptoms of c.pneu include brain inflammation, decreased vision, sore throat, hoarse voice as well as no pneumonia type symptoms at all.

Also, diagnosis is particularly tricky. The following goes through all the pros and cons of testing and diagnosis, including the fact that CPR testing is not definitive:http://www.cpnhelp.org/diagnosis_issues. If it's been present a long time, it migrates away from the lungs into many other tissues in the body, hovering especially in the mitochondrial membrane unfortunately.

Have been debating doing nothing in case my lab result was wrong or if the lab is correct, just hope it goes away like Sushi's apparently did, or do something. I've ordered transfer factor plasmyc and will probably try a small amount for a few months if I tolerate it. Haven't wanted to do abx thus the transfer factor on the advice of my doc.

Helen, I guess with PCR testing, you know you are positive (but I could be wrong about this- my understanding is still limited!) My symptoms are different than yours and I do not have raspy throat or any sputum but I do have shortness of breath with the most slightest exertion. I know the diagnosis is tricky and I looked at the link you provided. It seems like the link is saying that there are a lot of false negatives but not so much false positives which was concerning to me in my case.

It's interesting you mentioned Transfer Factor Plasmyc as this was one of the very first things my ND recommended (before I'd had any pathogen testing.) I was debating trying it but then she felt it would be too strong for my body to handle so we settled on Monolaurin and Maitake Mushrooms instead. I also now take Epicor. Please keep me posted if you start Transfer Factor, how it works for you.

@Gingergrrl No worries! I like to feel useful... Often topics in medicine are not very clear, but quite controversial. Like at what point do you have a chronic infection with C.P. I found one study and one review stating the mark should be IgM over 1:20. That is usually the point, when practical experience comes into the equation. I don't have a lot of practical experience (thank you ME), but it is very important.

You cannot only relay on theory and studies in medicine. That is why I said, you should trust Dr. K. He has portably seen a lot of artefacts in his career and knows how to handle them. Artefacts are more common than you think in diagnostics. There are not rare.

There are hundreds of viruses and bacteria, which are able to cause respiratory infections and pneumonia. So is probably wasn't C.P. By the way Levaquin is able to eradicate C.P. How long did you take it?

Daniel, thank you again and I'm so sorry that your med school career got interrupted by ME. You would/will be a great doctor and I hope some day you are well enough to return to your chosen career. I agree with you that practical experience and artifacts are very important and I don't discount them. That is why I want to understand from his perspective why my two positive IgM tests (on paper) are not important. If they were IgG, I would not be concerned.

Lastly, you asked about Levaquin and I took in in 2010 for a throat infection two years prior to mono and three years prior to the respiratory infection (which could have been the CpN.) So it wouldn't be relevant in this case. I keep seeing different abbreviations so am using "CpN" (but all referring to the same thing.)

 

[Gingergrrl]

I wanted to add an update now that I have received my test results from my doctor. I haven't had the opportunity to speak with him yet but have the paper results.

It turns out that the repeat test for CpN IgM was less than 1:10 and was negative (and not what he had quoted me earlier!) My initial test was 1:80 but I am assuming with the repeat test now less than 1:10 that it confirms the first one had a false positive?!!

On all three types of CpN for IgA, IgG, and IgM it said "Antibody not detected." So I am very relieved unless he tells me otherwise later . Thank you all for your feedback and this was a good learning experience for me.