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Lyme Disease & Health Update

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The Chronic Illness Files: Lyme Disease and Health Update -- completemama.com

I have Lyme Disease. For sure. (I got my lab results that confirmed this a couple weeks ago, but I’ve been so beat, it’s taken me this long to get this post finished.)

I feel like I can almost hear the thoughts of many who have followed along with my health issues this year: Now she has Lyme Disease?!

Well, I’ve had Lyme Disease. Now I know.

I have had a million thoughts about this ever since I learned there was a pretty good probability I have Lyme. It’s a controversial disease. It’s difficult and expensive to treat when you’ve had it a long time (also known as Late-Stage Lyme Disease). Nothing about this is going to be easy. It’s not something I’d choose, but it chose me. Now, with a proper diagnosis, I get the chance to fight it. If I hadn’t happened upon the right doctor, my health would have continued downhill. Thank GOD I found the right doctor.

Nothing else I’ve been diagnosed with has been taken off the table. Will it be? It’s definitely possible. Lyme can cause autoimmune problems, and my blood work definitely shows very HIGH levels of autoimmune activity going on. Until I get the Lyme Disease under control, my blood work picture may be unclear. (Sometimes Lyme can mimic other diseases.) There’s only one medication I am still on for the autoimmune diagnosis that’s in question, and that medication is also used to treat Lyme. We’ll get me figured out eventually, but it may take some time.

I have been treating Lyme for almost 3 months now. I started an herbal treatment at the beginning of September (this was started as a test, based on symptoms) and added antibiotics at the beginning of October after some initial blood work pointed to Lyme. I changed to a new antibiotic at the beginning of this month. I also take several supplements to detox and support my immune system. I’m not going to lie… treatment has been very rough so far. I’ve had to cut back on the herbal treatment (when the goal is to build it up) due to my body having too strong of a reaction. Unfortunately, feeling worse during treatment is not abnormal for Lyme that’s advanced, and treatment is probably going to take a long time. (See #8 in the Friends & Family link below.)

I’m going to share some information about Lyme Disease for those who are interested, but first a couple of other health updates:

  • My Hashimoto’s Disease had been under control previously, but I visited my endocrinologist a few weeks ago and my latest thyroid blood work came back terrible. This compounds many of my Lyme Disease symptoms. I’ll have to see if this complicates my treatment at all. My endocrinologist has increased the dose of the thyroid medication I take, and I’ll retest in a few weeks.
  • On Friday I went to see another cardiologist that my endocrinologist referred me to in order to try to get to the bottom of my terrible dizziness. I now have to wear a small heart monitor (called an event monitor) at all times (except in the shower) for 30 days. It’s not so bad and hasn’t affected my sleep much, but the stickers for the leads have been irritating my skin. Hopefully that won’t get too much worse. Also, I have to do some more lab work and am going to do a tilt table test next week and another echo-cardiogram when I go back in January. The great news was that this doctor is going to use the results of a cardiac stress test I did earlier, so I shouldn’t have to do that again. (That was a horrible experience dizziness-wise.) I don’t think there’s any imminent danger heart-wise, but anyone who’s struggled with persistent dizziness can tell you it gets old.
  • I go back to my doctor that’s treating my Lyme Disease this week on Wednesday.

In case you want to know a little more about Lyme Disease, here are a few links for starters.

International Lyme and Associated Diseases Society: Some Basic Information About Lyme Disease

This explains the stages of Lyme Disease: The Stages of Lyme Disease and Symptoms

Here is a lot of great info explaining symptoms, treatment, and the controversy of Lyme Disease: Lyme Info For Newly Diagnosed Patients

This is great for Friends and Family:  So you have a Friend or Family Member with Chronic Lyme Disease: A Guide to Understanding their Struggle (Great list! I especially like #4 because I really wish people wouldn’t take this personally.)

If you want to watch an eye-opening documentary, consider watching Under Our Skin. I watched it on Amazon Instant Video. (And then I found it for free on YouTube. ;))

That’s enough about Lyme for starters. I’ll have lots more to say about Lyme as my journey continues.

From January Until Now

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The Chronic Illness Files: From January Until Now (www.completemama.com)

My posts kind of fizzled after January. Here’s what happened with my health, the brief version. I’m sure I’ll forget to include things, but this is the gist.

In January, I started feeling really, very, inexplicably, unable-to-get-up-in-the-morning exhausted. At first I thought I was coming down with an illness, like the flu, but it just did not ever go away.

I referenced my running becoming difficult in this post. January was, in fact, the last month I was able to run at all. Shortly thereafter, I started developing extreme dizziness and several other symptoms, and I stopped running because I was afraid exertion was doing serious harm to my health.

I went to my doctor and over the course of several visits had her check my thyroid and anything else she could think of, along with a few tests I suggested. I have had Hashimoto’s disease (an autoimmune disease that attacks the thyroid) since I was 18, and it seemed like a likely culprit, but my thyroid labs looked okay. I got referrals to an endocrinologist (for Hashimoto’s) and a rheumatologist (as a result of one of my tests), and then my doctor ran out of ideas.

In February, I got a new doctor, who was more experienced. By the end of February, I had over 40 symptoms. I saw two specialists to check on specific issues while I waited for my other appointments.

In April, I finally saw the rheumatologist, who diagnosed me with another autoimmune disease*. I began taking medication for that. Somehow, I still wasn’t completely convinced I found the root of my problem.

In May, I saw the endocrinologist, who ran a bunch of endocrine tests and couldn’t find anything wrong there, but she did change my thyroid medication to see if that would help. Also, the rheumatologist gave me another medication, which should have made me feel better, but actually made me feel a lot worse. Unfortunately, I stayed on this medication for nearly three months. (More than half of which was tapering off.)

In June, I saw another specialist who ran some more tests. I wasn’t feeling any better by the end of the month, so I got serious about cleaning up my diet (after being “just” gluten-free for four months) and started following the autoimmune paleo diet to see if that would help. A lot of people think it’s a crazy diet, but when you feel terrible, you’ll try anything. I did see some small improvements over the next few months, but I knew I needed to improve a lot more.

In July, I saw another specialist to check out a specific issue.

In August, I saw a naturopathic doctor, who met with me for a very long time. She ran a bunch of labs my other doctors hadn’t, and suggested a number of supplements. I also had another round of visits with almost all of my doctors. More medications prescribed.

In September, I returned to the naturopathic doctor. One of my labs indicated I may be headed toward an additional diagnosis*. Something that was not really even on my radar. Something that makes me question: “Could I possibly have BOTH the rheumatologist’s diagnosis AND this diagnosis?”

This month I started medication to begin treating the new possible diagnosis, and next week I will have additional testing done to try to get a more definitive answer on that diagnosis. The medication is definitely making me feel worse, but that is typical. I also went to another specialist to check out something specific, and I am scheduled to follow up with the ND if my test results are back in time. If those results are positive, I will seek another rheumatology opinion.

So that’s pretty much where I’m at right now. I’m still following the autoimmune paleo diet for the most part. I have added back some foods at the recommendation of my ND. I am currently treating Hashimoto’s, the other autoimmune disease, and the potential new diagnosis. I know this post lacked a lot of details, but that’s because, at this point, I prefer to keep all of the speculation between my doctors and me. Being open about my health issues is difficult for me, so this was a start.

* Please bear with me, as I have a hard time revealing what these diagnoses are publicly when I still have questions about them. I’m sure more will come out in due time.

Okay, that’s all for today. No cute quotes this time!