It’s 2018, and Doctors Still Don’t know Shit About Lyme Disease
I’m writing this blog because I’m angry. Despite spending minimum time outdoors, keeping my legs and arms covered in 90-degree weather, and immediately taking a shower as soon as I come in from being outside every day, I’m one of the lucky estimated 300,000 per year that caught a tick-borne disease that is destroying my neurological and cardiovascular systems.
A disease that is the responsibility of our country’s medical community to know about.
I’ve been on a three week odyssey trying to get this properly diagnosed, and now that I have, I honestly want to shame the medical community for how badly they handle Lyme disease.
There is no reason, no reason on Earth, that I should be better educated on treating Lyme from googling things than people who have advanced degrees in medicine.
Here’s the summary of my treatments, and failure to receive proper treatments for the past three weeks.
Week 1
Out of nowhere, I began to feel like my chest was being crushed and lit on fire. My face also broke out as though I was 15 again, but I thought nothing of it. Quickly, I headed into CityMD to get my heart checked, as I nearly collapsed one morning and thought I was dying.
Me: I feel severe pain in my chest, like my heart is exploding.
Doctor 1: You must carry a lot of heavy purses.
Me: *lifting a clutch purse that is only 9 inches wide and three inches deep* This is my primary bag.
Doctor 1: Well, it must be anxiety.
Me: I feel like my chest is bursting. I am not anxious about anything and have never felt this in my entire life.
Doctor 1: The stethoscope sounds fine, so I don’t think you have any heart problems. Try to take it easy.
Week 2
The chest pains continued, and I felt a burning pain in my foot. I also had trouble remembering who/where I was, people’s names, and felt like fainting every time I got up. At this point I did a google search for chest and foot pains, and found that these were symptoms of Lyme. I found that Babesia (a co-infection) causes skin breakouts, and suspected I could perhaps have tick-borne illnesses. I thought back to what I thought was a mosquito bite from a month ago, and decided to see if it could be Lyme.
Me: My chest is burning and my foot feels like hot water is being poured on it. I was bitten by a bug four weeks ago, and I suspect this could be Lyme. I would like to be tested for Lyme disease.
Doctor 2: You are displaying neuropathy, and most likely have been bitten by a tick.The CDC recommends that 3 weeks of Doxycyline are taken as a precautionary measure, so I will prescribe that to you and we will test for Lyme.
Me: Do I need to be tested for co-infections? I believe I may have Babesia as well, because my skin has broken out.
Doctor 2: No, we will look at the test, and if you don’t have it, you can’t get co-infections if you don’t have Lyme. The skin breakouts are from stress.
I went home, googled, “Can I get Babesia without Lyme?” Answer: yes, yes you can.
Week 3:
Within two days of taking the Doxycycline, all of my neurological symptoms went away, and I felt like a normal human being again. But seven days later, I tried to get out of bed and nearly collapsed.
On the same day, I received word that I was negative for Lyme, so I stopped taking the antibiotics as I assumed they were making me sick. After three days, the sickness stopped. Then the chest and foot pains came back!
Feeling like I was going to faint, I walked back to CityMD and waited once more. A doctor came in with purple hair, wearing jeans. Now, I don’t mean to sound like anybody’s smarmy old grandfather with scotch on his breath, but when your doctor isn’t wearing a clinician’s outfit and has purple hair, you already know what kind of medical care you are about to receive.
Me: I am sure I have Lyme, and this medicine is making me sick. Can I please be switched to another antibiotic?
Doctor 3: You do not have Lyme, test is negative.
Me: Actually, all Lyme tests are negative during the first four weeks of exposure.
Doctor 3: No, that’s not true, you don’t have it. (This doctor clearly did not read the CDC’s announcement that the tests are 60% inaccurate in the early stages). I am sure you need to go to a neurologist for a brain tumor.
Me: This is absurd! I have never once shown any symptoms of a brain tumor, never get headaches, and it is clear I have a bacterial infection that only goes away when I have Doxycycline. Your test did not even look for Babesia or Bartonella, which I could have even if I tested negative for Lyme. How can you explain that the symptoms go away when I take antibiotics if it’s a brain tumor?
Doctor 3: ¯\_(ツ)_/¯
Me: As I said, you did not test for Babesia or Bartonella.
Doctor 3: Oh. What is Babesia and Bartonella?
Me: (shows her google results)
Doctor 3: Oh. I didn’t know what that was. Well, let me get some blood from you and we can run a panel.
The doctor then attempted to get my blood six times. She could not even get blood out of my arteries. Angrily, I burst into tears and shouted that I had Lyme disease and this made no sense, all I needed was a new medicine.
Doctor 3: You have a brain tumor. I will set up an appointment with a neurologist within a few hours. You need to be seen immediately.
I went home and sobbed, afraid of dying. And the doctor’s office did not call “within a few hours.” They called two days later. Angrily, I hung up on them, knowing I did not have a brain tumor.
The pain and fainting spells continued until later on in the week, when I could barely lift myself out of bed, and so my spouse had to lift me as though I were a geriatric old woman. In a panic, I looked for the first available doctor in my network. As I told her the whole story for the fourth time, a fruit fly began buzzing around my head, which I absentmindedly swatted away.
Doctor 4: Oh my god. You are hallucinating.
Me: No, I am not; there is a gnat circling my head.
Doctor 4: (in a condescending voice) Honey…there isn’t a fly there. You’re simply seeing things that aren’t real.
Me: It’s a damn fruit fly. You can’t see a speck flying from across the room.
Doctor 4: I’m going to write down on your chart that you are having hallucinations. I’m sorry, but you are.
Me: Ha! There it is!
I clapped my hands together hard and killed the fly. The doctor SCREAMED in terror as though I was a crazy person on a subway train brandishing a knife.
Doctor 4: Oh my god! What did you see this time? You are having violent hallucinations!!!
Me: The gnat. I killed it.
I showed her the dead gnat in my palm.
Doctor 4: …I will take hallucinations off your chart, then.
Doctor 4 ran a full blood panel and found that I was becoming drastically anemic later that day. Doctor 4 claimed I was only anemic, “Because I was on my period” (I told her I was not on my period, and it’s not due for two more weeks). Upon waking up the next morning and nearly collapsing again, I searched for the soonest available Infectious Disease specialist. I went in with my charts and prayed that he could help.
Doctor 5: Between the neurological symptoms and your anemia, you most likely have Lyme and Babesia. Babesia causes anemia. We will do a full panel of all tick-borne disease as you continue to take the medicine and will figure out if you have any co-infections.
Out of five doctors in a three week period, let’s look at the results:
2 out of the 5 doctors misdiagnosed me as having major symptoms or illnesses I did not have. They incorrectly suggested I was hallucinating or having a brain tumor, blatantly told me I was on my period when I already said I was not. Let that sink in. In typical medical arrogance, they would rather think they know best than listen to what the patient was actually saying, and they were severely off the mark.
2 out of the 5 doctors knew about the recommended 3 week treatment the CDC sets forth as the standard for testing an early Lyme diagnoses.
4 out of the 5 doctors did not know what Babesia or Bartonella was. I live in the northeast; everyone I know has been bitten by a tick at least once. And co-infections are present in at least 50% of bites.
1 out of the 5 doctors ran a complete tick bite panel (after I gave blood four times). Because the other four didn’t think you could have Babesia or Bartonella without Lyme (and you can).
The failure of these doctors to know about one of the most common infections in my region is absolutely disgusting. And if Doctor #2 had not given me Doxycycline at the beginning, I could be dead by now.
I have written this blog not just to let out some of my anger for these doctors simply not caring and being ignorant of the truth, but to also give some words of advice to anyone who might suspect they could have Lyme or have been exposed to ticks:
- Get your bite evaluated even if you did not see a tick on you and don’t have a bull’s-eye rash (I did not see either of these things).
- Insist on having a full tick bite panel, Iron count and CBC tests if you are bitten. Any doctor who will not run these tests for you cares more about their own arrogance than the health of their own patient. CBC is helpful, as it will tell you white blood cell count and prove infection (mine was near the max of the threshold).
- If a doctor is not giving you what you want, move on. There is no time for incompetence when it comes to a Lyme diagnosis.
- Listen to your body and be persistent. If something feels wrong, it probably is. Search your feelings, you know it to be true. (Had to throw in a Star Wars reference).
- Read as much about Lyme as you can, but read case studies with statistics, as though you are a doctor, so you can go in armed with knowledge. The knowledge that average doctors in our country do not have.
- Babesia sucks. It sounds like a disease that would afflict you with unwanted sparkly baby pictures on Facebook (yay babies), or gift a throng of busty blondes on the beach (a gaggle of babes?) It’s not, and it can kill you. But it sure does have a funny name.
