Know thy Enemy: Lyme Disease

“Know thyself, Know Thy enemy. A Thousand Battles, a thousand Victories”. -Sun Tzu

So many enemies. So many battles. I’m still just trying to build all the basic background. Unfortunately, I continue to struggle with all these illnesses and getting my brain to focus on posting seems to get harder rather than easier.

My next few posts are just going to be basic information on the various parasites and bacteria waging war inside of me.

I guess we should start with Lyme Disease and just get that out of the way.

Please remember that this is a summary of what I have learned through my own journey with Lyme and Co-infections. I am not a medical professional. I am just a sick suffering person trying to share my story to help others.

Lyme Disease (LD) is the fastest growing infectious disease in the US. It is caused by infection with the spirochete Borrelia Burgdorferi. It is highly controversial and the medical community remains particularly divided on how to treat the disease. (More on this to follow in later posts). The CDC estimates there are at least 300,000 new cases every year.

Borrelia Burgdorferi bacteria are transmitted by deer ticks (Ixodes Sculpularis) to humans. You should know what a deer tick looks like and how tiny (and hard to spot) the Larva stage can be. It is important to check for ticks often, especially during and just after exposure to the outdoors.

  • deer-tick-lifecycle    deer tick actsizeIf an infected tick finds you and attaches to your skin, it is possible for the tick to transmit any and all pathogens it is carrying to you. Estimates of how long a tick needs to be attached to transmit illness vary between 12 and 36 hours.
    This means that if you establish good habits of frequent tick checks, you should be able to find and remove any attached ticks before they can transmit the bacteria.If you are bitten by a deer tick, and the tick remains attached long enough to transmit the bacteria to you while feeding on your blood, then the spirochetes are carried through the blood stream and disseminated throughout the body. As the bacteria spread, early signs and symptoms begin,  including, but not limited to:
  • Erythema Migrans Rash (EM): This is the classic Bullseye rash you always hear about. It is considered a clear indication of Lyme Disease if present, however, estimates of how many people actually get the rash vary greatly and sources say it can be between 20 % of those infected or as high as 80%. The rash is thought to appear 1 day to 1 month after infection with the bacteria. It often occurs at the site of the tick bite but can appear anywhere. An EM rash warrants a diagnosis of Lyme disease with or without confirming blood work or other symptoms and treatment should be started immediately in those who experience it.
  • Mild flu-like symptoms (fatigue, chills, fever, headache, muscle and joint aches, swollen lymph nodes, etc.)

If not treated early, the bacteria begin to spread further over days or weeks. Lyme disease can spread to:

  • Central Nervous System where it affects the brain and causes cognitive difficulties
  • Peripheral Nervous System where it affects your nerves
  • Cardiovascular System where it causes carditis and or heart block
  • Liver where it can cause mild hepatitis
  • Eyes where it causes vision problems and possibly significant irreversible damage
  • Muscles & Joints where it causes swelling, tenderness and pain.

The symptoms of disseminated Lyme include:
Severe fatigue with need for frequent naps, low grade fevers, muscle and joint pains, sleep disturbances, irritability, headaches, light and sound sensitivity, sharp and stabbing or shooting pains, numbness, tingling, and severe cognitive difficulties.

When Lyme affects the central nervous system, and crosses into the brain, it can then cause symptoms of meningitis, encephalitis, or cranial neuritis, as well as cognitive difficulties including word finding problems, short term memory issues, psychiatric disorders, processing difficulties, and attention span problems.

Spirochetal bacteria are gram negative spiral shaped bacteria that cause diseases like Syphilis, Yaws, Relapsing Fever and Lyme Disease. Originally, Syphilis was known as the great imitator for it’s ability to evade the immune system, and cause a vast array of symptoms that mimic other illnesses and diseases. According to Columbia University, in the 1980s, Lyme replaced Syphilis as the great imitator.

These details are all important so you can understand, that at first, I did not have an EM rash. I had all the vague flu like symptoms and more caused by my co-infections. I lived in an endemic area and continued to tell my Dr. that I had been bit by many, ticks, but I continued to slip through the cracks. Like so many others, I was misdiagnosed with so many things. (Fibromyalgia, Chronic Fatigue, Migraines, general hysteria, Multiple Sclerosis, Demyelinating Disease, etc.) Doctor after Doctor continued to be baffled or disinterested and my condition continued to deteriorate. My tests would show some positive bands but not enough for a CDC diagnosis. I knew it had to be something tick borne. I continued to get bit often, and to get sicker and less able to function. I finally got chickens and the tick problem in and around my home began to subside quite quickly. The chickens stopped the madness.
Then one day in June about 2 1/2 years ago, shortly before my 38th birthday, I took a short walk on the rail trail near where I worked on my lunch break to try and keep my muscles from cramping up. If you are not familiar with a rail trail they are gorgeous trails through the woods where railroads used to run that are generally graveled, or sometimes paved, paths through the woods where people can walk alone or with their dogs and horses. This particular spot is extra quiet and in deep woods:

That fateful day at work, I took a short walk, returned to work, and somehow, finally able to relax without fear of tick bites at home after so long thanks to the chickens, I did the unthinkable. I forgot to check myself for ticks when I returned to work. I forgot I even went on that walk. I went home, went to bed, and in the morning, discovered a very small slightly engorged deer tick just above my left hip. I removed it, and went back to trying to maintain order despite my illness. A couple of days later, I felt a terrible burning pain on the right side of my abdomen. I touched it and felt something odd accompanied by pain. Lifted my shirt and found this:
I honestly thought oh great. Now I got bit by some kind of crazy spider. I showed coworkers who also thought probably a spider. After work, I went to my local ER. At first, they said it was not a bullseye. That bullseyes were flat and painless. They didn’t have raised blistered centers and they didn’t burn or hurt as mine did. I had symptoms of course, but I’d had those for years already. The Doc didn’t think it seemed like a spider bite either and went to do some research. He returned to my cubicle and said that actually Westchester Medical Center said that 10 % of EM rashes present exactly like mine. He’d give me oral doxycycline and then I should go see my regular physician to follow up.
Now, I was practically dancing on the ceiling at this point! Finally, a script for doxycycline, the medicine I was so sure I needed but couldn’t convince a doctor to give me!!!! But how ridiculous that I had to get bit again, and contract a new infection and finally present with the previously elusive bullseye rash.
I excitedly swallowed doxycycline dutifully for 21 days.
Absolutely nothing happened.
Zip. Zilch. Nothing at all.
Saw 2 more of my physicians, and both ordered new tests and one continued the doxyxycline for another 21 days.
Again, I swallowed the meds and nothing happened other than my heath continuing its rapid decline.
Zip. Zilch. Nothing at All.
Tests were positive now, even by CDC standards, no doubt I had Lyme disease. But Doctors didn’t want to prescribe beyond the two courses of doxy I had already been given, despite worsening symptoms. My GP gave up. He didn’t know what to do. He suggested I try an infectious diseases Doctor at an academic hospital such as Albany Med to the North or Westchester to the south.
I called both. I made an appointment with the first one who could see me.
I will add more post about this experience later.
But for the moment, we’re hitting the pause button. Saving the sordid details. Sorry.
****Fast forward*****
I continue to decline and present with more and more symptoms. Simple familiar tasks at work become difficult, I can no longer count on myself to remember where I am going when driving. One of the worst moments for my cognitive ability was the day I stood in tears at a gas pump, late for work, unable to figure out how to turn the pump on.  Finally, in March of 2016, I finally saw a Lyme Literate Medical Doctor (LLMD) who diagnosed me with neurological Lyme disease as well as many co-infections. I have been in treatment with him ever since (8 months now) though the first several months were spent treating my worst infection first, which was not Lyme, but a very different tick borne enemy, babesiosis. (Hopefully that word will change to a link to my babesiosis post in the next few days when I am able to write it).
The problem is that my Lyme Disease, as well as my other infections, was ignored for years by physician after physician, despite positive tests and ever increasing symptoms.  Unfortunately, this lack of effective treatment allowed the spirochetes to spread to so many different systems. They have so many different ways to evade detection.  Now, nobody has any idea what the proper treatment is for someone like me with so many different infections that were allowed to all spread so far unchecked.
I am 8 months into aggressive antibiotic treatment (including nightly IV Rocephin infusions in my PICC line for the last 3 of those months) and I am still ill. Though my cognitive symptoms seem to be finally improving in very small amounts, the road ahead is still long, and I still suffer from most of the symptoms mentioned above.
Previous to treatment, I had literally all of them, plus more from each co-infection, but so far, my heart related symptoms have improved drastically in the last few months of IV meds. The rest of the symptoms above remain so far, and the war on this elusive bacteria and more rages on.
But, as I keep telling everyone. There’s no way some twisty little bug is going to take me down. I still have fight left in me and determination to win over all the bugs. I have a life to get back to.

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