A Jinx and a Joke

At my last appointment,  we were reviewing my laundry list of symptoms and comparing to co-infection symptoms to make sure we weren’t missing anything. When we came to joint pain, my doctor asked, “Never had that, huh?” “Nope! What a weirdo!” I answered, knowing joint pain is one of the most common symptoms for Lyme patients. We all kind of shrugged. Hey, we’ll take it!

Guess what? SPOKE TOO SOON. Now, added to the tingling and nerve pain in my right limbs, I’ve got that signature Lyme Disease joint pain in my ankle, knee, and wrist. It’s like the spirochetes were listening!!

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Do you see ears on those squiggly little bastards???

Later in the same appointment, as my doctor was looking over my file one last time, she said, “I still am so interested in this Epstein Barr result. I don’t think I’ve ever had a patient who tested completely negative. Never even exposed to it!.” Epstein Barr virus, for the uninitiated, is mono, aka Kissing Disease, aka what everyone got in high school! My wife was already laughing before I could answer, “Considering what I was getting up to in high school, it’s nothing short of a miracle!”


Thanks, I’ll be here all week.

(Really, though – I should get some kind of medal.)

 

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Forward and Backward – Another Layer Deep

Let’s cut right to the chase. I am not 75% better, as my doctor hoped I would be by my June appointment. I have mentioned before how treating Lyme is like peeling layers of an onion. And now, in my fifth month of treatment, I am really starting to experience what that means.

We started with good ol’ doxycycline, the go-to Lyme Disease antibiotic. Plaquenil, an anti-malarial was added to address the Lyme in its cystic form. I experienced a small amount of improvement. Some persistent symptoms, in particular the stabbing headache that just wouldn’t quit, made my doctor suspect the co-infection Babesia. Co-infection tests are not every reliable, so though I tested negative for all of them, we knew I may still have some that would reveal themselves by not getting better with Lyme-targeting meds.

To address the assumed Babesia, azithromycin was added – an antibiotic that has proven to be helpful for both Lyme and Babesia. Doxy was discontinued, as Lyme spirochetes are known to adapt to antibiotics, so you need to switch things up to continue progress. With azithromycin and plaquenil on board, I continued to make progress, but not enough progress. The next addition was Ceftin, used to treat bacterial infections (Lyme is caused by the bacteria borrelia burgdorferi).

This is where I started to really see layers form. Looking back over my treatment, I could see some symptoms had nearly vanished. The knife-like headache was gone. I hadn’t noticed my lower back aching in a long time. I also noticed that my “good” days were getting better. I noticed two good days in a row…soon I noticed FOUR good days in a row! But the good stretches still ended abruptly, and when they did, a new “normal” for my bad days was emerging. These bad days were foggy days. Days I couldn’t play checkers with my son. Days I fell silent in the middle of conversations because I couldn’t think of a word. Nights that I couldn’t get to sleep for the aching in my right limbs.

With the improvement of my headaches after azithromycin, we can assume that they did come from an undetected case of Babesia, as we guessed. My remaining, lingering symptoms, bring the question of Bartonella, another very common Lyme co-infection, that, to be honest, I suspected I had from the beginning, when I first researched co-infections on my own. Bartonella, and complicated cases of Lyme, are often helped by another antibiotic, rifampin. If the rifampin helps, we can assume that I’ve been dealing with the Bartonella Layer of this Lyme Layer Cake, if you will.

After sharing my notes and observations with my doctor at my June appointment, she first uttered the phrase “neuro Lyme.” She ordered another MRI of my brain (my first was in November, and was clear), and gave me this cheerful (<–sarcasm) prescription with which to schedule it:PhotoGrid_1434992100822

Was I surprised to hear her say Neurological Lyme, and order an MRI? No. I am happy to get back into the tube. It is scary to have brain function problems, and really, if I am having neurological symptoms, that means I have Neurological Lyme – otherwise, why the heck would this be happening? (Well, MS I suppose, but that doesn’t really seem to be my case.) I do know, from my own research, that Lyme is very hard to find visible evidence of in the brain – through MRIs or other imaging technology. But it’s worth a look, when a young person with no history of brain problems suddenly forgets how to write a check, or can’t beat her 5 year old at checkers. It’s worth a double check.

We’ll see if this new drug will bring improvement. We’ll see if the MRI reveals any evidence of Lyme, and what that might mean for the course of my treatment.

We’ll see, we’ll see, we’ll see.

Sick in the Head

As treatment breaks through the layers of Lyme Disease, some symptoms may subside, while other reemerge with a vengeance. I experienced that vengeance recently, with a surge in my neurological symptoms. This presumed herxheimer reaction went on for days and was, to say the least, not fun.

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Not-so-invisible illness

I had constant droop face. The weight of the whole right side of my body felt like it was dragging me down to the ground. Anything other than laying down felt like work.

The tingling, to the point of a dull, deep ache in my right arm and leg, which sometimes stretches into my neck, was relentless. Whenever I have this pain, it is always worse at night and makes getting to sleep incredibly challenging. No position alleviates the discomfort, and ibuprofen doesn’t help, since it’s nerve pain.

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Sick moms play board games in bed

The brain fog was thick. It was hard to communicate effectively. It’s a very difficult feeling to describe. When I feel this way, I have a hard time telling others what I am feeling. I have a hard time keeping up in a social situation. It’s like looking at everything through foggy glass. Of particular note was a night where I couldn’t even comprehend a game of checkers with my 5 year old.

Once the herx lifted, I felt much better, thankfully. I am finding a marked improvement in my headaches, which is encouraging! My energy has improved as well. I’m feeling a bit sharper. Creeping forward…until whatever comes next.

PSA: Tick Testing

One of the scariest things about Lyme Disease is the uncertainty. We don’t know which ticks are carrying Lyme. We don’t know how long a tick needs to be attached to risk infection. We don’t have very accurate tests to diagnose Lyme Disease.

I want to share some information today to help alleviate a small portion of the mystery for some people. If you are unfortunate enough to get bit by a tick, but fortunate enough to see the tick and have the chance to save it, you can get that tick tested to see if it is carrying Lyme. The test costs $50.tickreportdotcom

The University of Massachusetts Amherst offers tick testing through tickreport.com. Detailed instructions for submission can be found here. They ask that ticks be submitted in a plastic ziplock bag, with a piece of moist paper towel. They will take a tick in almost any condition, and will refund your money if the tick sample is found to be unsuitable for testing (which they say is very rare).

Of course, you’ll want to get yourself tested for Lyme in the event of a tick bite as well. But it is worth noting that UMASS has found their testing to be 99.9% accurate, while the Lyme tests we have for humans (which work in a different way) are nowhere near as fool-proof, and produce numerous false negatives. While you’re talking to your doctor, mention that you have the tick and see if testing is available through their lab – some towns (especially in areas where Lyme is prevalent) offer free tick testing for their residents, and you might not find out unless you ask!

So today’s Lyme Lesson is: If You Get Bit – Save The Tick

Sad Bunny

The other day, my son found a red pen and decided to draw some pictures. He was busy for a while, making all kinds of doodles, and then called me over to see one he made for me:

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“I love it!” I said. He asked if I knew what it was. I guessed, “Maybe a duck?” “Nope,” he said, “It’s a sad bunny.” “Oh, why is it sad?” I asked. His answer was barely a whisper, so I asked him to repeat – “Lyme Disease.” I felt a lump in my throat.

“The bunny is sad because it has Lyme Disease?” I asked. He nodded seriously and said, “It’s you. You’re resting in bed.” I tried to hide how sad I felt in that moment. I told him, “Sometimes I’m sad that I have Lyme Disease too, but I try to remember that I will get better.” He was silent.

Thinking quickly, I suggested he draw a second picture – of me, happy, when I get better. He liked this idea, and grabbed a quarter that was beside him on the table to trace a circle for my head. He seemed happy with the finished product, but not entirely convinced. So I suggested we write something on the picture to remind us that Mommy WILL get better. He is starting to write a lot and do some spelling recently, so I knew even though he couldn’t read the words, he would understand. And he did.

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When we left the pictures on the table to go do something else, we were sure to leave the happy one on top, as a reminder. But the fact is, there are still days when I am that sad bunny. He knows that. I have no answer for him as to when the happy Mommy in the second picture will be here to stay.

No parent wants their child to see them as a sad bunny. I love that little dude more than anything, and I hate for him to be sad about me being sick.

There’s no moral of the story here. No neat bow to tie this package up in. Just a crappy moment from the trenches of Lyme.