The Implications of a Tick on an Auto Immune Disease

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If you read my last post, Implications of an Autoimmune Disease, then you are aware of some of the risks that come along with Enbrel; mostly a weakened immune system. In addition, you know that I’ve been dealing with some swollen glands, sore throat, stiff neck, headaches, fatigue, and more recently… despite the Enbrel helping my back, I did not like these other symptoms. So, after a visit to the minute clinic, another visit to a regular doctor to get tested for Mono, the flu, and a whole slew of other illnesses, I finally got my answer.

On Thursday afternoon, I called my doctor to cancel the appointment we had scheduled for Monday because it overlapped with Andrew’s staple removal. The doctor came on the phone and said, “well I’m looking at your bloodwork… everything looks normal except well, you tested positive for Lyme’s disease.” And thus, I had an answer to my symptoms. Albeit, perhaps not that answer I had hoped or wanted (if you can possibly hope for some type of illness), but, at least it was an answer. She said she would send me antibiotics that I should take for two weeks and she would refer me to an infectious disease doctor who I needed to follow up with.

I’m sorry what? The last time we went hiking was 6 MONTHS AGO! Such is life. On Thursday and Friday, I checked my email and mail for either a prescription or medicine; I found neither. I called my doctor’s office to ask if I could just come pick it up and the woman told me that it was the doctor’s day off and she would just call me back on Monday. This kind of upset me because even though Lyme’s is very treatable, 1) I feel like SH*T and 2) you’re supposed to start taking antibiotics the second you find out. Luckily, on Saturday, the medication showed up in the mail . The medication is doxycycline (pictured below). You take it twice a day either 1 hour before eating or 2-3 hours after eating. It causes nausea and headaches and fatigue. Here I pause- wasn’t I supposed to be on this medication to stop the headaches and fatigue? Oh, life! In the meantime, I had to call my Rheumy and explain that I had been diagnosed; he told me to immediately stop taking Enbrel. Which is just fantastic, considering that I just started to feel immensely better on Enbrel.

I called the infectious disease doctor Monday morning and the woman said that the next available appointment was January 23rd. Wait, what? 1.5 months from now? There’s no way I can make it 1.5 months without Enbrel. So, I called my doctor back. She said, yes you can wait until January 23rd and you should keep the appointment because you may need a longer course of antibiotics. I mentioned that I had to stop taking Enbrel until my clearance from the infectious disease doctor. She replied that this infectious disease doctor was the only one in the area and that I should call back and say if there are any cancellations to let me know. Let me pause here– does it make any sense to go on antibiotics for two weeks, only to go off them for a month, only to possibly find out at the end of January that I should be on a longer course of antibiotics? But, i digress.

Andrew then did a search of infectious disease doctors in the area and found one up near my Rheumy. I immediately called and they were super friendly and got my an appointment.. wait for it… TOMORROW MORNING! Amazing! So, I am off tomorrow morning to figure out the next course of action. Needless to say it has been a whirlwind tour of diseases and illnesses! By now I am sure that Andrew is sick of my complaining, but, he is being a great sport and I continue to appreciate his support as I have my mini emotional breakdowns!

I will see that although the past few months have been trying, finding out that Andrew’s tumor was benign, seeing the drain and now the staples/stitches removed makes me sooooo completely happy! On top of that, I just found out that I got an A in one of my courses and an A+ (the first he’s given to a student at JHU) in my other course. So really, it’s hard to say that this past week has been anything but AMAZING.

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17 responses »

  1. You and Andrew are learning a life lesson for dealing with chronic disease. First, you are always going to be your best advocate. Of course, your A & M Team is twice as powerful! Second, you need to become the expert, since you will be managing your health 24/7. So, seek out the best and the brightest in medicine to teach you everything you need to know. It doesn’t matter if they are not geographical convenient, you’ll generally see them 4 times a year.

    I am relieved to hear that you have found the answer to your mystery symptoms. I’m not happy about it, but at least now you have a road map for this journey.

  2. I’m glad you finally got some answers but what a complicated mess of stupidness. ~;0( I just read about Lyme disease on Wikipedia and I can’t believe how exactly the example rashes in that article match the rashes you were getting at your injection sites. What the hell – you’d think some doctor might have noticed that back in October. Ug. Worst. Though glad you took matters into your own hands and found an appointment for tomorrow. Good luck and hang in there!! Many much loves from us.

  3. the JA was diagnosed with Lyme disease last year, took his meds and is a thousand times better [meaning that he’s not as tired all the time and isn’t sick from being around students everyday]. I think it’s high time that we schedule a hang out to catch up and chat 🙂

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