June 18, 2015

Lucas’ Lyme Experience (He is going to be okay!)

Last Sunday, June 7th, we went on a walk down Maeser Canal. We all got bug bites and I didn’t think much of them, assuming they were just mosquito bites. Yesterday (10 days later) I noticed that the spot where he had a bug bite now had a bull’s eye appearance. He also had two similar looking rashes on the back of his neck.

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I had seen this post on Facebook a few weeks earlier, so I knew this was a problem that needed to be addressed. We went to the doctor that morning. The doctor really didn’t know what to do because he said that we don’t have Lyme in Utah, but it definitely looks suspicious. He said he was going to call the Infectious Specialist at Primary Children’s Hospital and ask him what he thought and how soon we would be able to test for Lyme.

Meanwhile, I came home and posted this post on Facebook, asking if anyone else from Utah had ever had Lyme or had a bite similar to this. I didn’t really realize how big of a deal Lyme was until this point. If you read all of the comments that were posted, you can see why I got pretty freaked out. I then started doing research on the disease and was horrified. If Lyme’s isn’t treated within the first 30 days, it can lead to a lifetime of chronic illness including symptoms of arthritis, memory loss, loss of speech, palsy, paralysis, constant headache, fatigue, the flu… The list goes on and on. There is a list of 93 symptoms of Lyme. It is nicknamed the great imitator because it mimics so many diseases. I was horrified. My little guy is only 2 1/2, this would completely change his life. He is so happy and sweet and smart, I couldn’t stand the thought of all of that changing. It broke my heart, and still brings me tears just thinking about it.

I was overwhelmed with people asking if I needed help, giving me advice, and just showing love and care. I am so grateful that we have such wonderful friends and family to be there for us. I had a few people that I hardly even know contact me through Facebook and phone calls that actually have Lyme. This was reassuring to me, just to prove that we do have Lyme in Utah! (I even called a few pet clinics here in town to see if they had ever had animals with Lyme come in, and they had.) These people said that they had a lot of difficulty receiving help on the west coast because doctors here just say that we don’t have Lyme. This was troubling to me because I just wanted someone to help me find answers.

Here is some information on Lyme that I obtained after doing a lot of research and talking to many people: First of all, LYME IS IN UTAH (See here also and look at their FB page). Lyme is contacted through the bite of a deer tick that is infected. They can be as small as a poppy seed. They have to be on your skin for 24-48 hours in order to transmit the disease. They may fall off on their own (which is why many people get the disease without knowing it) or they may need to be taken off by medical professionals. Only 10% of the time, people get the bull’s eye rash from an infected deer tick. So, we are actually lucky that Lucas got this rash, or we may have not ever known what was wrong with him. Sometimes the rash is at the site of the bite, sometimes it is on other parts of the body, and sometimes it spreads. Many people do not have any symptoms of Lyme (fatigue, headache, palsy, neck stiffness, arthritis) for months, making it nearly impossible to detect before it becomes a lifetime of problems. Here is the biggest problem: The tests that they use to identify Lyme are only 50% accurate, and many times they produce a false-negative result. Also, the test cannot be accurately administered until 4-6 weeks after the patient has been infected because that is how long it takes for the body to produce Lyme antibodies that will be prevalent in the bloodstream. At this point, it is nearly impossible to be cured.

As I said, there were many people who were helping us and connecting us with people who could help. One woman in particular was in my old ward and many people told me to talk to her. Both she and her son have Lyme’s. She doesn’t know how she contacted it. She went to many doctors all throughout Utah and all of them basically told her she was crazy and that we don’t have Lyme here. Finally, she was able to find a specialist who found her positive for Lyme.  She has been receiving treatments from him for a couple of years now. And, the best part is that she was actually in San Diego going to visit him when she called me! She told me she would show the doctor all of the pictures of Lucas and tell him everything to see if he thought it was Lyme’s.

Thursday morning we woke up and looked at his rashes. They had gotten worse. The one on his hand was hot and swollen and he now had three on his neck (he only had two on his neck on Wednesday.) All of them looked like a bull’s eye.

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I decided to take a different approach. Rather than trying to prove it was Lyme’s, I wanted to try to prove it was/wasn’t something else. So we went back to the doctor in the morning. He said that the only other thing it could be is cellulitis. The fact that his rash was hot and swollen were  indications of cellulitis. However, it would be abnormal for cellulitis to spread to his neck and to be in the shape of a bull’s eye. At this point, we had a decision to make. Do we treat just the cellulitis (with the possibility of the real problem actually being Lyme’s, even if the rash does go away,)  do we treat him for Lyme’s (which is a month worth of antibiotics that may be harmful to his stomach and cause antibiotic resistance,) or do we wait and take the Lyme’s test in a month? Obviously, the last option was not even considered. We decided that we would rather be safe than sorry. So, we are going to give him the treatment for Lyme’s (which will also kill the cellulitis, if that is what he has.) We are going to also be giving him probiotics to help with his digestive system. And luckily, Lucas has only had to be on antibiotics once before, so this is a plus for avoiding antibiotic resistance.

Later in the day the woman that I mentioned above, that was in San Diego visiting her specialist, also contacted me. She showed her doctor the pictures of Lucas’ rashes and told him what has happened the past few days. He said it was definitely Lyme. Classic, picture-perfect Lyme. Even though we had already decided to give him the antibiotic, this was still reassuring to me to make sure I was making the right decision.

The past two days has been so emotional and scary for our family. We are SO grateful for all of the concern our loved ones have shown. There are so many good people in the world! Thank you so much to anyone who has asked how Lucas is doing, given advice, shared personal stories, or just shown us love. WE LOVE YOU!

I wanted to share this with everyone so that people could be more aware of Lyme’s disease. Check yourself for ticks when you are outside, wear bug spray, and seek help immediately if you get a bull’s eye rash. We are so lucky that we caught Lucas’ illness early to prevent further problems; I can’t even imagine what we would have had to go through had we not taken care of this quickly.

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