So on the rare occasions that I have enough energy to do anything productive, I've been doing medical journal research and scouring POTS patient forums to try to figure out what caused my POTS and to try to find something that will help me get my quality of life back.
It's commonly accepted that many POTS patients have what is called post-viral POTS - that is, they developed POTS after a viral infection. This is similar to people who develop Chronic Fatigue Syndrome (CFS) after a mononucleosis or Epstein Barr viral infection. In fact, there are connections between CFS and POTS currently being studied by Dr. Julian Stewart at New York Medical College in Valhalla, NY. This is the "best" kind of POTS to have, because patients with post-viral POTS are the ones most likely to recover over time. One study found that about 50% of post-viral POTS patients had substantially recovered within 5 years of the onset of their symptoms. And of the 50% that hadn't recovered, many had seen some improvement in their daily symptoms.
Early on in my illness, I tested positive for Epstein Barr virus (EBV), but not mono. My Epstein Barr tests showed that I had a past infection, not a recent one. Almost everyone over age 30 in the US would have the same test result, since most of us get exposed to Epstein Barr at some point in our younger lives. EBV stays dormant in your body, and only rarely does it come back and cause symptoms. So it is unlikely that an Epstein Barr infection caused my POTS.
I fell ill in early January 2010, and in late January 2010 I was tested by an infectious disease specialist for several "atypical pneumonias," including Mycoplasma pneumoniae. There are about 100 species of Mycoplasma and they are the smallest free living agents of disease that can infect humans. They are classified as bacteria, but they have no cell wall like almost all other bacteria. Mycoplasmas act more like viruses than bacteria in many regards. Most antibiotic medications destroy bacteria by attacking the cell wall of the bacteria, but this does not work with Mycoplasmas because they do not have cell walls. This amorphous shape allows them to enter in the smallest places in your body, to pass through membranes that other bacteria cannot enter (like the blood brain barrier), and remain dormant for many years.
While viral infections are recognized by the medical community as a common trigger for POTS, I was curious if a bacterial infection could also trigger POTS, so I began researching this. I came across a case study written by a team of doctors who treated a patient with POTS that they believed was triggered by a bacterial Mycoplasma pneumonia infection.
Then I found a newspaper article about a Professor of Cellular and Molecular Biology at the University of New Haven, Dr. Eva Sapi. A few years ago Dr. Sapi came down with a serious illness after a tick bite, but she tested negative for Lyme Disease, which is caused by Borrelia burgorferi bacteria. She decided to check out the ticks in her area of Connecticut, and low and behold, she found that those little buggers were carrying much more than just Lyme Disease. She found that most of the ticks she tested harbored several species of Mycoplasma. She also found other pathogens previously unknown to be transmitted by ticks.
I was bitten by about 20+ deer ticks, dog tick, a few lone star ticks and possibly chiggers (or juvenile ticks) at the NYS DEC mountain biking trails in Eastport, Long Island in September 2009. The trails were badly overgrown because the State had cut funding from the DEC, so they could not longer afford to properly maintain the trails. My husband and I got about 3 miles into the one way trail, and my bike chain broke because it got snagged by a large branch. The trails were too overgrown to walk through and it was about another 6 miles to the end (with only and hour or two of daylight left), so we decided to carry my busted bike and bushwhack our way to an adjacent farm field. Well, the farm field was DEC property too and it was totally overgrown with poison ivy and sticker bushes, so let's just say that was a really fun hike. Hours later at dusk, with dozens of mosquito bites and ticks crawling all over us, we made it back to the car. We spent a half-hour de-ticking ourselves in the parking lot and about a hour each in the shower getting those little rascals our of hair, the crooks of our toes, and even one in my belly button. Gross! As a precaution, we went to the local walk-in clinic and asked for a preventative dose of Doxycycline to try to avoid getting Lyme Disease. They gave my husband and I two 800 mg Doxycycline pills to be taken for two days. We went back to the doc about 8 weeks later for a follow up test to confirm that we did not have Lyme, and all was well. I have been tested for Lyme and it's common co-infections (babesosis, bartonella, ehrlichiosis, etc.) many times by different doctors who assume their tests will come out different than the last 5 doctors who looked for these bugs. Nothing has come back positive, except the Mycoplasma pneumoniae.
I got a little cold in early November before I got really sick in January, but nothing serious. I still went to work and went snowboarding in VT. I also almost passed out at lunch with my boss in November too, which was kind of odd. I felt like I had a fever when it happened, but I took some Tylenol and the fever feeling did not subside. I went home early and fell asleep and then I felt fine the next day and returned to work. Then all hell broke loose on January 2, 2010 when a full onslaught of autonomic symptoms appeared during a ski trip in Vermont.
Putting all of this information together, I have added a new theory to my list of theories on what may have caused my POTS and autonomic neuropathy. My new theory is that I may have developed a Mycoplasma pneumoniae infection after being bitten by Mycoplasma carrying deer ticks in the summer of 2009, or perhaps I just picked up a Mycoplasma infection from a person I came into contact with. The "minor cold" I had in November could have been a little walking pneumonia caused by the Mycoplasma pneumoniae infection (most people who are infected with Mycoplasma pneumoniae don't even know they have it - that's why they call it 'walking' pneumonia, because you can usually still go to work/school and feel just a little under the weather). The feverish fainting episode in November may have also been caused by a Mycoplasma infection. Most Mycoplasma pneumoniae infections are spread by coughing and then another person inhaling the bacteria into their lungs. If I caught it by being bitten by a tick, it would have gone straight into my bloodstream and possibly could have passed through protective barriers and entered my nervous system - avoiding a major lung infection. I had chest x-rays in January/February and they were always 'normal' showing no signs of infection (although one doctor out of many I saw said he through the x-rays showed a minor case of bronchitis). I even asked the infectious disease expert who found the Mycoplasma infection if it could be infecting my nervous system, because even in January 2010 when I first got really sick, I was having lots of neurological symptoms and not much in terms of lung/respiratory problems. He said it was possible, but rare. I found a medical journal article stating that up to 7% of patients hospitalized with Mycoplasma pneumoniae infections have symptoms involving the Central Nervous System, and while the mechanism involved is not clear at this time, direct invasion of the nervous system, neurotoxin production and immune-mediated mechanisms have been proposed. See also, http://www.ncbi.nlm.nih.gov/pubmed/16181677.
The good news is that Mycoplasma pneumoniae can usually be treated, or at least the symptoms relieved, by long term dosing of strong antibiotics like Tetracycline or Doxycyline, or a combination of several antibiotics over months and months, or maybe even a few years.
We are still not sure whether my Mycoplasma infection is the root cause of my autonomic neuropathy and POTS or if it has any relationship to my current illness at all. That's why it's just a theory. But interestingly, the infectious disease specialist I saw during the first month I was sick, in January 2010, thought I had Mycoplasma pneumoniae and gave me 7 days of Doxycycline to treat it. I took it and actually felt much worse when I was on the antibiotics, but I toughed it out thinking it would be more important in the long run to kill the bacteria. I later learned that I could have been experiencing a "Herx reaction" when I got so much sicker from the antibiotics. A Herximer reaction occurs when a rapid dye off of a pathogen in response to antibiotic treatment results in a sudden release of toxins in the body, which can exacerbate symptoms and may actually cause serious health problems. My infectious disease epert thought I had Mycoplasma because enough of my symptoms seemed to match the diagnostic criteria at the time, and because my lab work showed that I had extremely elevated IgG levels of the Mycoplasma pneumoniae antibody, and the fact that I may have had a Herx reaction from the antibiotics hey gave me only makes me more inclined to think he was correct.
Normally, elevated IgG antibodies indicate a past infection, because IgG is produced once your body has already been exposed to a pathogen. IgM and some of the other Ig antibodies are usually indications of a current and active infection, but my IgM levels were within the normal range, although present. When I asked the infectious disease expert about this at the time, he said that sometimes a person can develop very elevated IgG if they are exposed to a second infection of the Mycoplasma pneumoniae. He said you may not develop IgM because your body has already "met" the Mycoplasma pneumoniae germ in the past and has developed IgG antibodies to fight it, and that's why my IgG antibodies were so high and IgM were within the normal range. It sounded logical to me, and my symptoms seemed to align with a Mycoplasma infection with some neurological complication, so I suffered through the antibiotics.
A year later, I was still sick and I happened to be in the hospital. I mentioned to another doctor about the Mycoplasma issue and about my prior IgM and IgG levels. They told me that if I did have a Mycoplasma infection the year prior, 7 days of Doxycyline would not have been enough to properly treat it. So they checked my Mycoplasma antibody levels again, and a year after the first time it was checked, essentially the same results came back. My IgG was over 400, when it should be below 100 or non-existent. I have discussed this issue with various doctors, and they all tell me something different when it comes to interpreting the IgG test results. Some say it's an old infection, some say it could be active, some say they're not sure. I don't know who to believe and I am not currently taking any antibiotics to treat it.
Even if I don't have an active Mycoplasma infection, I have learned that this bacteria can hide out in your body long after you've been treated with antibiotics. Even if there is no Mycoplasma at all in my body, perhaps I am still recovering from the damage it caused to my nervous system when it was active. Like I said, this is just another theory.
To all of you POTSies out there, I want to hear from you if you have tested positive for Lyme or Mycoplasma pneumoniae (or were diagnosed with walking pneumonia), especially if this happened just prior to the onset of your POTS like symptoms.
Stay tuned to see if my Mycoplasma mystery is ever solved...