One of my twin daughters is in her pre-teen years, and has been sick since Thanksgiving with what seemed to be sequential viruses. She would have a few good days, then would get a low-grade fever and feel tired; then a few good days, followed by a low-grade fever and some congestion; then a few more good days, followed by a low-grade fever and stomach aches.
Although she has historically always been a very healthy child, I didn’t think much of it. I just figured she was having a rough winter. But then, on one of her most frequent good days I said, “Honey, it is so nice to see you feeling well again.” She replied, “Well, I feel better, but I still feel really weak and tired all the time.” My inner mommy alarm started ringing. Ironically, a couple of days later she came home from school with a stomach ache, nausea, and low-grade fever. That was on a Friday.
By Saturday her fever was gone but she still felt tired and dizzy. By Sunday she seemed mostly better, but on Monday I found her lying lethargic on her bedroom floor…at 12:30 in the afternoon. I called the doctor immediately and took her in.
The pediatrician was concerned with her recent weight loss combined with all the symptoms, and decided to test her for quite a few things, including: Celiac Disease, blood count/Leukemia, thyroid levels, and a general blood panel. When she asked if I was thinking of any other possibilities, I suggested we add Lyme Disease and Mono. The doctor didn’t feel Mono was likely due to no swollen glands, and wasn’t sure about Lyme because of the time of year, but she agreed both tests were reasonable to add.
Tuesday afternoon we found out there was something in her blood work that indicated it MAY end up being a positive test for Mono, but the actual Mono test wasn’t back yet. They also said something else was slightly off, enough that they wanted to send her for more testing: a complete metabolic panel and urinalysis to check for vital organ function and possible kidney or liver issues. However, they suggested we wait until Thursday to give her body time to recover from all the blood they had previously taken, and to give the other tests more time to come back.
Yesterday afternoon we received a positive Lyme test back, so the nurse called to let us know they were calling in a prescription of Doxycycline, which was to be taken 2 times per day for 30 days. I hung up and immediately looked up the drug information. It warned NOT to use the drug if there was a risk of kidney or liver issues. Hmmmmmm, they were sending my daughter for tests to check her kidney, liver, and other major organ function. Shouldn’t we wait to start this until we know if her kidneys and liver are OK? I called and submitted that question to be asked and chose to not fill the prescription yet. I listen to my gut when I have a check, and I had a big one.
I also sent a text to a friend whose son had been diagnosed with Lyme, and she shared that after almost finishing the antibiotic with her son and living through all the side effects, they had found that he never had Lyme disease to begin with…it had been a virus. She shared the CDC standards for ensuring Lyme Disease is properly diagnosed. Do you know there are two tests, and one without the other can be a false positive? I didn’t, but I am glad she shared, because when I called the doctor’s office this morning to ask, they had only done the Western Blot test, which the CDC labels as the second test. They had skipped the first test (EIA or IFA). According to the article:
“The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.”
I am thankful that my friend shared her experience. I just hung up with the nurse. During the conversation, I learned that my daughter has had Mono in the past but it is not active or contributing to current symptoms. I also asked the nurse to tell the doctor that before I fill this prescription, I want:
- All of the blood work that she has requested back so we can be sure my daughter’s kidney and liver function is operating efficiently.
- To wait until we add the second Lyme test to today’s follow-up blood work and get a positive result back.
Advocating for your children and yourself is so important. Anymore, almost everyone agrees that antibiotics should be used more sparingly and carefully. Not only can you become immune, but antibiotics can completely throw off the balance of healthy bacteria needed in your gut. When your gut bacteria becomes unbalanced it can lead to a host of other issues, such as lowered immune function, anxiety/depression, digestive issues, focus issues, weight issues, food intolerances, and more. Personally, I need to be SURE she has Lyme before starting a month-long treatment that carries definite side effects.
Another couple of days won’t hurt her if she does have Lyme. If I am sure, then I feel the risks of untreated Lyme Disease outweigh the risks associated with the antibiotics. Plus, I will do everything I can to counter the negative effects with natural efforts if we end up going down that road.
I will keep you posted as we continue along this journey. For now, I wanted you all to know about the two-test method for ensuring an accurate Lyme Disease diagnosis, and to remind you of how important it is to advocate for you and your children. Doctors are human.
- Always read the drug information sheet, and I suggest you do it BEFORE you pick it up at the pharmacy. They are all posted publicly on the pharmaceutical companies’ websites. I make this suggestion because, once you leave the pharmacy with a drug, they cannot take it back. We have learned that expensive lesson the hard way.
- Ask your questions, even if the doctor seems agitated that you are asking. Your thoughts matter. NO ONE knows your child like you do.
- Listen to your gut. If you don’t feel comfortable with a suggested treatment, tell the doctor and work together until you either do feel comfortable, or until you come up with a different option that does feel right to you.
See my follow up post here.
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Disclaimer: I am not a Physician. I am a wife, a mom, a certified health coach, and someone who loves learning about natural wellness tools and sharing with others the incredible things I learn through my classes, research, personal experiences, and the experiences of friends and family. These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent disease. Rather, they are intended to support your body in its efforts to restore balance and maintain health.