MEDICAL QUESTION: Positive for Mycoplasma Infection. What now?

Presumably the test you had done was a serology test for exposure to Mycoplasma. I practice infectious diseases here in MN, and I can tell you that this issue comes up a lot. First, serology testing looks at antibodies to a particular antigen. These antibodies are usually IgM (which rise in response to acute disease, and typically fall in the months after) and IgG (which rise more slowly, and can stay elevated for months to years, depending on many factors). In the case of common things like mycoplasma, it's difficult to know does a single positive test indicate acute disease, prior exposure, re-exposure, etc.

Examples:

You have a cough, shortness of breath, and a chest x-ray consistent with pneumonia. A sputum culture shows no organism (mycoplasma is not culturable), but you improve with medication. At the time of illness, mycoplasma serology is sent, and both IgM and IgG are negative. 6 weeks later, a repeat test shows high IgM, and positive IgG. This situation is pretty unambiguous- you have illness consistent with mycoplasma, response to treatment, and serial testing showing an acute rise in antibodies after the illness. That is a clear case of mycoplasma pneumonia, as close to a sure thing as there is in medicine. However, in most cases no one bothers testing, since treatment for pneumonia should be with a drug that covers mycoplasmma, and the cost/hassle of the 2 blood draws is a few hundred dollars-- for information that won't change treatment.

Second example: After that initial illness, 5 years later you are run down, fatigued, and worried that something is wrong. You have no cough, or specific symptoms that fit with mycoplasma infection. But, someone orders a test, and sure enough, you have detectable IgM and IgG to mycoplasma. Are your new symptoms caused by mycoplasma? Probably not. The test just reflects that you have antibodies circulating from your past infection, and they have nothing to do with the current one.

Finally, all serologic tests have a weakness in that they have some degree of cross-reactivity-- the antibodies can recognize antigens that are similar to the one they were originally formed against. This is particularly true for IgM, which is a big sticky molecule that can very easily cross-react to other antigens.

As to what further tests you should be pursuing-- that all depends. Hard to tell from the details you gave, but you could have some systemic illness (be it infectious, rheumatologic, hematologic, or other), you could be overtrained, or you could have some nutritional deficiency. Best bet-- find a good physician who listens well, takes into account where you live, what you're exposed to, and what you eat, ans go from there. Best of luck.

Thanks for the response, dd. I come from a Biochemistry background, so hearing some of the comments you made remind me of information I long ago "learned" but seemed to have forgotten. I understand the elevated antibodies aren't necessarily indicative of a current infection, just that I have - at some point - been exposed and have detectable levels of the antibodies; whether it was recent, or in the past.

Given your background, I guess my more specific question regarding the positive test to high antibody levels to mycoplasma would be whether or not this could be indicative of a different type of illness than "just" walking pneumonia, or any other infection that might result? My reason for asking is two-fold. First, for going on close to 2 years now I've been told the standard, "You're probably just running too much so your immune system is run down and your prone to your allergies causing sinus infections." Well, to be honest, I've gone from being a competitive runner putting in (comfortably) 100-120 mpw to - literally - having issues with managing even half that. Secondly, being that for nearly two years the doctors I have seen have not "bought" that I have a genuine understanding of my body and can "feel" that something just has not been the same, I want to ensure I am my own advocate regarding this topic so that I can finally get it resolved.

So, if you do not mind me asking it a little more poignantly, if an otherwise healthy, very fit, young patient were to come to you complaining of such symptoms and having - periodically - those syptoms elevate to a severe level, and upon performing the tests I have mentioned, what would you presume as a wise path forward regarding some likely - or not so likely - possibilities of what could be the underlying issue?

Also, regarding nutrition: I eat rather healthy and I stay away from foods I am allergic to (I have had extensive allergy testing and actually take allergy injections on a weekly basis).

Thanks again for your kind response and any help you can provide is more than welcome!

Sure, but will be brief for sake of time:

As I understand it, you have had just over 1.5 years of fatigue, trouble concentrating, slight confusion/memory issues, increased frequency in your asthma flares, mild temperatures, and aches in your muscles and joints.

I'm afraid that you have some pretty non-specific symptoms, and without knowing more about what your exposures are, and what has been done, much of this is generic. That being said, here's my thoughts, with some assumptions specified:

First, I assume the basic tests you've had done included a complete blood count, and you're not anemic. Also, iron studies including ferritin would be of interest if you are (or even if you're borderline) anemic, to evaluate for iron deficiency. the rheumatologic tests presumably included an ANA, rheumatoid factor, complement levels, and maybe others-- if no abnormals there, makes rheumatologic disease less likely, but not impossible- there are still things like sero-negative rheumatoid arthritis, juvenile rheumatoid arthritis, stills disease, and others.

If you're sexually active, testing for HIV and syphilis should be performed. If in a lyme endemic area (NE, Midwest, North Pacific) lyme testing may be indicated-- but the discussion on the validity of "chronic lyme disease" is one I won't get into. Suffice to say, there is a large amount of controversy, with the evidence supporting there is no such entity, but rather a post-lyme disease syndrome. The distinction being that one implies a chronic infection, needing treatment, whereas the other is a group of symptoms (similar to yours) that are described after lyme infection, but for which continued antibiotics do nothing for, and have caused bad outcomes, including death.

Other things that might be reasonable to explore-- churg-strauss syndrome or other disorders on that spectrum, looking at immunoglobulin levels to explore the possibility of a hyper IgE syndrome, and perhaps others.

Because of the family history of rheumatologic disease, the joint aches, and the fact that it hasn't gotten better over 1.5 years, my next move would be to refer you to a thoughtful rheumatologist. All the best,

-dd

I assure you, I am not a troll.

I live in the South (Texas, to be exact), which, in lieu of your comment, I'm sure makes your heart skip a beat with joy because I now fall into the "Southern folks are morons for believing in God", but I'm not too concerned with that. I could post the name of the medical clinic the guy owns/operates if you so desire, but at the same time, I do not feel as though I need to provide such details because they are completely unnecessary and irrelevant; the questions I was seeking answers to were regarding my own health issues, not the legitimacy of the profession a fellow believer in a higher power chose.

I'm simply looking to see if any other runners out there have had similar issues because this has been dragging my running down for nearly two years. If you do, and you do not mind chipping in your $0.02, I greatly appreciate it.

dd, thank you for the additional thoughts and input.

CBC tests were done (and have been done each time I have gone in complaining of these issues) and have always come back normal. Only one time in my life was I told that I was "borderline anemic" (when I was 17), but as I understand, that is fairly common for young adults and all I did was take Iron supplements for a few weeks.

I find it interesting that you mentioned juvenille rheumatoid arthritis, as I have a sibling who suffered from that for ~5 years when we were younger. As previously stated, my family has a history of rheumatologic disease; my mother was diagnosed with Systemic Lupus Eryethmatosus when she was around 25 years old (very young, comparitively, to be developing SLE).

One thing I had left out in my initial post by accident that likely does not help all that much with narrowing down to more specific symptoms (as you said, I do realize my symptoms are fairly generic) have been numerous times with pains consistent with pericarditis/pleurisy. That is, every so often around the time I will have a "flare-up" (i.e. asthma issues intensified, a day or two of terrible aches and mild fever), I will develop chest pains for a week or two at a time. I actually have been to two cardiologists for these issues, as my mother also had a heart attack at the young age of 43 (very fit woman, just terrible genetics), so my physician wanted to ensure complaints of "sharp chest pains that radiate into my arm" or "extreme tightness and my heart skips a beat" were not precursors to potentially traumatic cardiac events in the middle of a race/run.

Thanks again for taking to the time to respond; I will definitely exercise due diligence with pursuing this a bit further...

Seriously, what you have described is just as my wife experienced it, Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis). She had what they thought was an episode of pericarditis, with that radiating pain as you described, attendant fatigue that would just not go away, Mycoplasma Pneumoniae (as did I), and a false-positive ANA test, which is rather common in CFS, leading rheumatologists to incorrectly presume Lupus, as happened to my wife (she had a small outline of the "butterfly rash"), along with the litany of other criteria that fulfill the "syndrome." Are your lymph glands noticeably swollen or tender, do you get frequent headaches, and do you suffer from a sort of neurocognitive malaise? Do you feel "trashed" waking up and is your sleep otherwise disturbed?

At a minimum, I would get an ESR (sed rate) done, because it is commonly low in this disease, as well as early and late titers to EBV, CMG, and HHV6. If you get positives, I would pursue this further and get a full immune panel done, looking at NK absolute count and cytotoxicity, as well as CD4, CD8 counts and ratios, CD56, among others, maybe look into RNase-L pathway, as it's ALWAYS dysregulated in this illness, with a preponderance of the lower molecular weight RNase-L, an abnormal molecule weighing 37 kDa versus the normal RNase-L, which is 80 kDa.

Regarding Lyme, I agree with dd. Most spirochetes are common commensal organisms and can generally cross the mucosal oral barrier into the blood and brain. Elevated CD-14 indicates a breakdown of the mucosal barrier in CFS, with anything activating monocyte CD14. Spirochetes are very common in CFS under dark field microscopy but probably rarely lyme spirochetes, and common spirochetes can cross-react on Lyme Western Blot assays and polymerase chain reactions at lower stringencies (H. Pylori, the cause of ulcers, is frequently mistaken for a spirochete).

I also had heart issues, a result of extremely low cardiac output and neurally mediated hypotension, which all of the cardiologists missed. You might also consider a tilt table test. Your background of allergies and asthma suggests an immune system susceptible to dysregulation. If the minimal tests come up positive, see a specialist. I'm not trying to alarm you, because this could be a myriad of things, but it sounds frighteningly familiar. If you can address it early on, the better your chances of a recovery.

Forgot to mention, IL-8 is commonly elevated in this illness as well. I wouldn't run, and get lots of sleep/minimize stress until you figure it out. Continuing to run and work is what buried me, ultimately (almost literally).

Ok, last post for now. If you do, in fact, have CFS, Dr. Larry Sharp in Fort Worth is a good one I'm told, if you're anywhere near there.

Thanks for the response and the suggestions!! To answer your questions:

1) My lymph nodes seem to stay inflamed; particularly in the groin area which I had always had explained as being cellular debris from the pounding my legs take.

2) Rarely, if ever, do I awake feeling awake. I often struggle to get up and stay awake for about the first hour of getting out of bed.

3) I typically wake up at least 2-3 times a night unless I have just worn myself out that day (i.e. run a ton off only 5-7 hours sleep).

4) I get headaches on occasion, but not incredibly often.

5) Regarding the "neurocognitive malaise" you questioned, that is quite possibly the best description of the memory and "cloudy thoughts issues" I have had.

Also, I suppose it pays sometimes to listen to a doctor... the first time I went to a cardiologist, he did a ton of test (stress test, ECG, ultrasound, wider portable heart monitor for 2 days so they could monitor for arrythmias while I ran) and when they all came back negative, he wanted to do a tilt-table test. I never called back to set it up because at that point I was a 21 year old who was super fit, tired of going to the Doctor to get test results that were inconclusive, and he'd answered mine and my parents main concern: I had no real heart issues.

Regarding the Doc in FW, I am about 5 hours away but if additional tests point toward CFS, I'd be willing to give it a shot.

Thanks again!

Please, I beg of you, DO NOT RUN until you know what you're dealing with. Exercise makes this illness worse, despite the standard, generic protocol of GET (graded exercise therapy). Actually, post-exertional malaise is the hallmark of this illness, although I think it's more nuanced for a fit athlete who is accustomed to a certain degree of constant discomfort or overtraining, making it harder to recognize.

You may not have this, and I pray that you don't, not that you can't come back from it if it hasn't plagued you long. You are young and, if this ends up being the diagnosis, you must rest, sleep a lot (try natural therapies first, but medicate if you must), take naps if you can, and if your blood volume is low, treat that. Read about Martha Kilcoyne. I think if you are young enough, you can rebound from this. Diet is critical, but you already get that.

I'm not a doctor but was in the process of applying to medical schools when I fell ill, with a background in microbiology, immunology, and genetics from a top-tier school. I think the fact that I was a very fit runner worked to my disadvantage, as it may yours, as you can still plod your way through life (I even got advanced degrees) starting from a higher baseline than a normal person, but eventually I succumbed. I fell into diastolic dysfunction, formerly the domain of 70-somethings but increasingly appearing amongst the younger ranks. Good luck.

I am functional to a degree, but nowhere near my former self, as I didn't address this until about five years in and it didn't get severe enough to totally compromise my life until about seven years in. By then, it is most assuredly too late, barring some miracle cure, though I have seen several top specialists and have used some very unorthodox therapies from Europe and elsewhere that have helped tremendously.

Forgot to mention that C4a and TGFb1 are also typically elevated, but I'm not sure how many doctors are going to get that specific.

Came upon this post looking for positive mycoplasma, daughter just diagnosed, and must say I do have an idea. Just my 2 cents, lol, but have you been to an immunologist? I too suffer from many of the same things and my PCP referred me to immunologist, who then did testing to find out I have a Primary Immunodeficiency. .. scary sounding but true. I have CVID. Common variable immune deficiency.

It is often overlooked but I would highly recommend am immunologist in your area. Good luck!

"CVID should be suspected in children or adults who have a history of recurrent bacterial infections involving ears, sinuses, bronchi and lungs. The characteristic laboratory features include low levels of serum immunoglobulins, including IgG, often IgA and sometimes IgM. Another part of the diagnosis of CVID is

to determine if there is a lack of functional antibody. This is done by measuring serum levels of antibody, against vaccine antigens such as tetanus or diphtheria, measles, mumps, or rubella, hemophilus or pneumococcal polysaccharide. Patients with CVID have very low or absent antibody levels to most of these vaccines.

Immunization with killed vaccines is used to measure antibody function, and this functional testing is crucial prior to beginning treatment. These tests also help the physician decide if the patient will benefit from immunoglobulin replacement therapy and can be key in obtaining insurance authorization for this therapy. The number of B- and T-lymphocytes may also be

determined and their function tested in tissue cultures."

From

http://primaryimmune.org

"Many physicians are taught, when you hear hoofbeats, think horses, not zebras, and focus on the likeliest possibilities to make a diagnosis. However, physicians need to look for the unusual to detect patients with PI. IDF says THINK ZEBRA!"

http://primaryimmune.org/idf-publications/patient-family-handbook/

This is a great answer. I would love to have a doc like you...any chance you are in Virginia? I'm going through a similar thing with my daughter who is away at college. She has been sick for 1 month and has lingering asthmatic symptoms that she has not had since she had bronchitis as a child. The odd things is that the inhaled steroids did not touch the wheezing which leads me to think of mycoplasma. She did take a course of doxy which didn't seem to improve anything. She has a very low resting pulse, so I am afraid of the zpac with the heart issues. We have been adressing the dorm room heating as a possible culprit...hepa filters etc. I will mold test them when school resumes. Any thoughts? Thank you, Nancy D'Alessandro

Mycoplasma pneumoniae positive, candida positive in my blood, ana currently negative, and ra negative. Brain fog, wake up tired, sometimes it hits me all of a sudden and I just have to lie down. But no pains like you would get with fibro or cfs. Any thoughts? I get weekly allergy shots, but no asthma. Have an appointment with infectious disease doc in Jan.

Go to an LLMD. Sounds like Lyme. There's a great one in Lexington va Dr. H

Thank you for posting your medical case. I'm sure it will be a great benefit to several people. Please keep us posted on your progress. Peace, Fogrunr

Hi, any chance we can get an update? I know its been a while, but you may be able to help others. I am in the same boat with symtoms and chasing doctors. What is this disease? Thank you!

My feet have fallen arches, which probably led to pronation. I am also pledged with large bunions. I can take these shoes out of the box and start hiking with no worries. They really are the only shoes I have in my house. From the slippers through the sandles, to the sneakers and finishing with the leather boot. Also, Orthofeet stands behind their product 100%.

I know this is like 20 years later, but I was hoping for an update.

I googled my way here researching info about mycoplasma infections and was intrigued. I have been searching for a year to figure out what is going on with my body. Most recent tests have shown high mycoplasma igm and igg. I was dx'd with SLE in 2011 but last year started having significantly more fatigue and some other, different symptoms than I have experienced in the past. Including, but not limited to: multiple new food and environmental allergies, dizziness, exercise and heat intolerance, hives and rashes. And more.

Anyway, I know this is a long shot but figured it wouldn't hurt to check and see if anyone has any other information out there!