I have wanted to share with you a personal story that affected my family regarding Lyme disease, an accidental diagnosis. I thought it was imperative to share my story with you because if it could happen to me, then it could happen to you. I wish I had someone to share his or her story with me before going through the turmoil of a child’s sickness.
Back in December 2012 my youngest daughter started complaining about excruciating headaches. I took her to see her doctor and he looked into her nostrils, checked her ears, diagnosed her with a sinus infection and prescribed an antibiotic for her. After one week on the medication her headaches did not improve and I contacted the doctor’s office to tell them that the medication was not working He suggested I get a nasal spray to treat the ‘sinus infection’ and so I did. Another week goes by and the headaches are not subsiding and I requested to bring her in. At this time I asked if she could have a Lyme disease test because I remembered when I had Lyme, I had similar symptoms. Living in a deer infested area, it is usually the first thing you think about but not the first thing you get tested for. I was told, based on the medication that had been prescribed for the sinus infection, if she did have Lyme, the medication would have taken care of the disease. The doctor told me my daughter had a chronic sinus infection and proceeded to keep her on the same medication for another week. He told me that usually most patients need two weeks on this medication before they will start to feel better. I believed him because he was my doctor for nearly 13 years and I trusted that he was giving me his best medical advice.
My daughter was still having these intense headaches and I am picking her up early from school 3x per week. She is missing classes and yet she was still pushing herself because she did not want to fall behind in school. We were at our wits end because she was going to sleep with the headaches and waking up with them and they were lasting for the entire day. We called our doctor once again to say the medication was not working and we needed to do some tests to see what was the problem. I decided to skip going to our family doctor and requested a referral to see a specialist. I then took her to ENT Specialist (Ear*Nose*Throat) and he sprayed something in her nose and she felt relief for a couple of hours. The ENT took some cultures and recommended that I invest in a night guard for her to bite while she slept to help with her headaches which he indicated might be occurring from clenching and grinding of the teeth. I was crazy with worry and willing to try anything but I chose not to buy this product because I did not think all of a sudden she was getting headaches from her teeth clenching at night.
We are now in February with my daughter is still having these headaches. The day before the huge snowstorm in NY, the ENT was supposed to call me with the results of the culture and yet he does not call. I called the office and was told he was busy with another pressing issue and had his receptionist call me to tell me my daughter’s results were negative; yet, he wanted my daughter to take some drug that he had the nurse call into the pharmacy. I blew a gasket. How dare he just call in a prescription without discussing with me about this medication, side-affects, directions for taking the drug but most importantly why was he prescribing this steroid for my 13-year-old.
I had to file a formal complaint and later that day he calls me to apologize for his oversight. Two days later, we were at his office and he tells me that he wanted my daughter to have a CT-scan. Given his earlier unprofessionalism, I opted to NOT go with his recommendation and I scheduled an appointment to see a pediatric neurologist at Columbia Presbyterian in NYC. I fought for an early appointment and was scheduled to see him within the week. We drove into the city and saw this specialist. I was feeling good about the visit until in the middle of the appointment, in our presence, he takes a personal phone call and all professionalism goes out of the window. At this time my patience is running thin. I get over my frustration and he diagnoses my daughter with chronic migraine headaches and prescribes a drug that required us to have her take a heart screening to make sure she could take this drug that had serious side effects and he also prescribed a MRI (MRI’s use less radiation than CT-scans and are indicated for use in children for diagnostic purposes). My daughter felt relieved that there was a name and hopefully a solution to stop the pain but I did not believe it was chronic migraines. I thought there’d be no harm done if some drug testing procedures were carried out to give me some more peace of mind.
When we got back home I decided to schedule a full exam for her so that we could have blood-work and urine tests administered because I was not convinced this was a chronic migraine issue. The doctors were telling us she was under stress, it was all in her head, it was the food she was eating, and you name it. The day before her appointment she was so ill, throwing up, fever and stomach pains along with the migraine headaches. I called the doctor to ask to come in a day early. My doctor’s office staff was very rude and seemed not to care about the pain my daughter had suffered with now and everyday for 3 months. I was livid and at that moment called the insurance company and changed her doctor. My Facebook friends gave me a recommendation for a new physician and I called their office and they saw us within an hour. I decided that I wanted her to have a full physical with urine test, blood test and a Lyme test. The doctor questioned why Lyme and I explained to him that my gut was telling me to have this test done. To his credit, he did not disagree with my request. He conducted a through physical and personally scheduled the MRI because we were just thinking the worst (could she possibly have a brain tumor). It was the worst 3 months of my life. We were sleep deprived, uninformed and scared. The next day she had an MRI and she was so brave. It was important to keep her spirits up and keep our promise that we were not going to stop until she felt better.
It is now the end of February and 4 days after our visit to the new physician, the results were in…my daughter had Lyme Disease The MRI test was negative. I was both relieved and angry. The doctor that I trusted and was his patient for 13 years had misdiagnosed my child and inadvertently caused her unnecessary pain for 3 months because he refused to do a simple Lyme test. It is very important to note that most doctors are unfamiliar with the procedures and indications for testing for Lyme disease, luckily there are home testing lyme disease kits like those found here – https://dnaconnexions.com/product/lyme-panel/ – so I know to do it myself in future. The rule of thumb in the Hamptons is, if all other diagnosis fails and there are symptoms of unknown origin in children and adults, test for Lyme. It is more important in children because many times, they will not express if they are feeling sick and just think that feeling bad is a ‘new‘ normal for them.
What if I was not a hands-on parent? What if I did not have health insurance? What if I did not fight for my child, how long could this have prolonged. She was immediately placed on a very high dosage of antibiotics (500mg cefuroxime axetil twice a day which is a recommended treatment for Lyme). This medication started to work and she started feeling better in 2-3 days but diarrhea was a side effect. Some antibiotics will kill the normal bacteria that live in our bowel. Since my daughter does not like yogurt (the natural way to restore normal bacteria) my pharmacist recommended a probiotic, Florastor for Kids; that helped restore the good bacteria in her bowel. I just mixed it applesauce and gave it to her one hour before she was scheduled to take her medication.
I built her body back up with lots of green vegetables like black kale, broccoli, Brussels sprout and healthy choices. Within 2 weeks she was feeling back to her normal self. It did take an entire month on the medication before she had no more headaches. It has been 5 months since her last headache. If she needs the medication again, I may look to an online pharmacy to help with the Prescription Drug Prices, as they can get pricey otherwise. But I won’t compromise on my daughter’s health.
My friends, I share my story with you because this really could happen to you or your loved one. When an unexplained illness just appears and you know that you have been in an area with ticks, demand a Lyme test just to rule it out. I am no expert on Lyme but I have learned what an insidious disease this is. I am just a mother who was fighting for my child’s life and demanding excellent healthcare services. It is my hope that I have reached at least one person discussing Lyme disease, an accidental diagnosis.
For more information on Lyme Disease click here..
*Note..it is important to know that everyone does not get a bulls-eye rash…often times some do not even know they were bitten by a tick.
Special thanks to Kurt Leggard, for providing health facts in this article.
Kurt Leggard is a Registered Nurse and specializes in Long term and elder care.