24 Months... and Counting

HAPPY ANNIVERSARY TO ME?

November 25, 2011 is the day I started taking antibiotics for my Lyme disease treatment. About two months later I was told by my doctor that my treatment would last six months to a year. Having been treated for a month during my first bout with Lyme disease in the mid-nineties, I thought my doctor’s estimate was outrageous. November 25, 2013 has come and gone. I am still in treatment for Lyme disease.

If you are new to this blog, reading from the beginning to present will bring you up to speed on my battle with Lyme disease. I have been discussing my personal experience along with how the debate over Lyme disease testing, whether it can be chronic or not and the treatment have affected/ been affecting me.

DID YOU KNOW?

There is an anti-malarial medication called Coartem that has been in high demand in the United States. Occasionally it takes a few days for prescriptions to be filled because it is not always available. You are probably wondering how there could be a shortage of an antibiotic for malaria in the United States and why I know this fact. Coartem has been yielding great results in battling Babesia, one of the other tick-borne illnesses I have. I have been taking it since September. The great thing about Coartem is that is reacts badly with 4 of the other 5 antibiotics and one of the supplements I am currently taking. Every fourth week I get to change up my medication and supplement regimen so I can take the Coartem without causing harm to my body. You’re probably already thinking that my two plus years of taking multiple antibiotics for my Lyme disease treatment is causing me harm already...

YOU’RE TO YOUNG FOR MENOPAUSE

I had an appointment with my doctor in mid-November and I mentioned to him that I was having trouble regulating my body temperature. He made a note of it in my file and also told me that in my latest round of blood work one of the numbers for my thyroid function was off.

Since mid-November my body temperature regulation issue has become much worse. When I go to bed at night I am cold. Cold as in shivering and full of goose bumps. I put on many layers before bed. When I wake up in the morning I am drenched in a cold sweat. By the time I walk outside to go to work I am feeling really warm and am never dressed correctly for the weather. Despite being underdressed I keep sweating through all of my clothes. At some point during the day at my office I cool off and then I become really cold which leads me to throw on the layers before I go to bed. Two out of three things could be happening here:

1. The new antibiotic cycle mentioned above has riled up the tick-borne bacteria that I am harboring, and my body is trying to get rid of it, or

2. Due to the amount of antibiotics I have been on for the past two years, my thyroid has been affected, or

3. A combination of 1 and 2. 

On a few occasions while mentioning my hot flashes at work, I have been told I am too young for menopause. That statement is the only funny part about this hot flash scenario. Clearly more extensive blood work for my thyroid is in my future.  

IT'S THE MOST WONDERFUL TIME OF THE YEAR

It’s that time of the year again. The Christmas trees are all decorated, holiday music is blaring all day long in at least one co-workers office, and everybody is bringing holiday treats to work that I need to avoid. Usually I am good at sticking to my Lyme diet and ignoring holiday parties, but over the past week and a half I got caught up in the holiday cheer and did a few lunches with friends, sampled cookies, cupcakes and chocolate at various parties and drank a couple of sodas. In what may or may not be a coincidence right before I started indulging in holiday sweets, I came home from work one night, sat down on my couch and started crying. And I couldn’t stop. It was most likely a combination of exhaustion, increased aches and pains from a few days of wet/cold weather and the fact that everything is very open-ended in regards to how long this will keep going on and when I will actually feel human again. I guess every once in awhile a good cry about this frustrating battle with Lyme disease is therapeutic. I woke up the next day with a stuffy nose, puffy eyes and one of those nasty headaches you get after crying for hours. Once I started moving around I felt better and was in a good mood by the time I got to work. As it turns out, that headache I just mentioned above is nothing in comparison to what I have been dealing with since I decided to let sugar back into my diet.

Processed sugar is one of the many things I was told to cut out of my diet when I started my treatment due to the fact that it causes an inflammatory response when consumed, and people with inflammatory diseases do not need to increase their inflammation. As you can see above, I really sugared it up for the holidays. I’m not saying I have been completely processed sugar free throughout my treatment. Every once in awhile, never on consecutive days, I really want cake. Or pie. Or chocolate. Or soda. It always tastes good going down and then I regret it when my symptoms flare up.  This was the first time my indulgence spanned a block of consecutive days. 

This past Thursday I got a headache around 4 PM while I was at work and I ate a mini-snickers bar. My headache went away. But the right side of my neck and shoulder were throbbing. Later that night the headache came back while I was trying to go to sleep. Between the headache the shoulder and neck discomfort I couldn't fall asleep. Friday at work the headache started at about 4 PM again and I ate another piece of candy… well more like a handful of Hershey kisses. This has happened to me around the same time every day since. Each night my head, neck and shoulder aches have gotten worse. Last night was the worst night since my sugar binge headaches began. The pain in my neck and shoulder was about ten times worse than the first night. My ears had stabbing pains in them. My jaw hurt. I was dizzy and at one point it felt like my brain was trying to climb out of my head. I couldn’t get comfortable and was up till the wee hours of the morning tossing and turning, really regretting my week and a half of bad food decisions.  


Today my headache came knocking at around 4 PM and I didn’t answer. I am ignoring the sugar craving and my headache is getting worse. As I am writing my neck is getting more tense by the minute and my jaw hurts. I hope my family is ready to deal with my sugar withdrawal during Christmas since I am heading their way tomorrow. 

(Click here, here and here for major food-related incidents I have written about).  

DO YOU THINK YOU ARE GETTING BETTER?

This is an interesting question that I am often asked. My day-to-day battle with Lyme disease is very up and down. Actually sometimes the hourly battle is up and down. It is best to look at the big picture when trying to answer. I can honestly say, with a big grin on my face, that I am doing much better than this time last year. Isn’t it funny how a potential thyroid problem, being on six antibiotics, experiencing heightened aches and pains from the winter weather and exhaustion count as “doing better”? 

I should say, energy-wise I am doing better. I am more active then I was year ago. And while I still have to take a lot of naps after a full day of activity, the naps are not as long. My parents even commented on my energy level when I was visiting in November for Thanksgiving. They were excited to see me more lively and in a better mood than I have been in for many, many months.



Side Note: 

The night before Thanksgiving I went to a Rob Zombie concert with my friend Laikisha at the 9:30 club in Washington, DC. It is a small venue, and we pushed ourselves up near the stage to rock out for the show. In addition, we also got knocked around since we were standing at the perimeter of the mosh-pit. With aching hips, legs, and shoulders I woke up the next morning and was on the road by 5:15 am to drive 5 hours north to visit my family in New York. I wouldn’t have been able to stand up at the concert last year for the whole time, let alone get 5 hours of sleep and then drive to New York for Thanksgiving. Who am I kidding. I don't even know if I could have physically gone to the concert last year. Even though I was tired and had to take a lot of naps during my visit in New York, my parents claim I was energetic. So there you have it. I am getting better. The process is slow as molassis, but I am getting better!!