Lesson 1365 – Identifying Chronic Lyme in Your Family

fda.gov

fda.gov

Honestly, I am getting more and more people contacting me (which, by all means, please ask your questions.) about strange symptoms their kids are having this winter.

Last night a mom told me about her son who had tested positive for Lyme disease in November/December, was treated with one round of antibiotics and is now having some knee/joint issues where the knee is swollen and hot. (First comment – ticks are usually not around in these months and so if you test positive in December, chances you are have a full blown infection that’s been there for some time. Second comment – a “round” of antibiotics (typically 2 weeks) is probably not going to do anything for Lyme disease, especially if it’s set up shop in your body.)

The knee condition was not the result of an injury, she told me.

That’s an important statement because in our case, one of my sons’ first symptoms started off with:

  • Back pain (they said it was his backpack)
  • Rib pain (they said it was asthma)
  • Swollen fingers (they said he must have jammed them without knowing)
  • Knee pain (they said it was growing pains)
  • Ankle pain (they said he must have turned his ankle without knowing)
  • Foot pain (they said it must be the support in his shoes)

Here’s the problem with diagnosing Lyme disease. If you look at each symptom individually, you see each symptom individually. However, if you put them all together, you start forming a bigger picture.

Why was a young, healthy (until that fateful year) kid’s entire body falling apart?

And then I started looking at my other kids and their “constant aches” I made a spreadsheet of every possible symptom I had heard in the house and I checked off which kid had which symptom. It didn’t take long to start seeing patterns. Oh sure, some of the kids had unique symptoms (one had severe abdominal pain) and another was so tired all the time we thought he had mono (he didn’t.) But they all had similar symptoms – nerve involvement, muscle twitching, joint pain, and memory issues. When I plotted the symptoms out, the heart palpitations that I thought were just a part of growing older were also present in my young son (both of us had never had heart issues before.)

Clearly something was going on. It was at that exact point that I got angry. Really, really angry at the doctors we had been seeing.

If you suspect you or your child has chronic Lyme disease (which may or may not include a co-infection), the BEST thing you can do is to start documenting the symptoms. If your knee hurts write down the day and time (even if the pain disappears later in the day.) If you feel your heart flutter, write it down.

If more than one of you has constant medical problems, make a family list and ask each member if they have the symptoms. It wasn’t until I asked my son about his heart that he even mentioned the fluttering. Because it didn’t hurt, he thought it was normal.

When you start asking the questions, you start seeing the bigger picture. And when you start seeing the bigger picture, you can start advocating for better treatment.

When I told the mom who wrote to me last night that I’d be mentioning her story on my blog today, this was her response:

I don’t mind at all if you mention it. If it weren’t for you sharing your stories and experience I wouldn’t have known that this can be such an issue once we found out our son had it!

Public awareness is one of the reasons my son and I are going to do the walk of New Hampshire (from top to bottom in 2 weeks – 185 miles.) We are doing it because both of us have severe permanent joint damage as a result of chronic Lyme. For us it’s too late, but the more people who know that this can (and does happen) the better.

We are also walking to let others (and ourselves know) that life doesn’t end with chronic Lyme. We live in New Hampshire. We got infected with Lyme disease. We’re being treated by a Doctor who understands chronic Lyme and we’re doing our best to keep moving forward.

It is what it is.
Disclaimer: While I do have some medical background (clinical microbiologist) I’m not a medical doctor. Instead I’m a pissed-off mom who, along with 5 of her kids, has chronic Lyme disease and co-infections due in part to the *many* doctors we initially went to who couldn’t identify Lyme disease if a tick came up and bit them on their butts.

***

Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

Also, join me on Facebook to find out more about the flock (children and chickens) and see some pretty funny chicken jokes, photos of tiny houses, and even a recipe or two.

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1 Comment

Filed under Lyme Disease

One response to “Lesson 1365 – Identifying Chronic Lyme in Your Family

  1. That was informative–thanks! I’m so sorry you and your family have had such difficulties and glad for you that you are improving.

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