Tuesday, August 31, 2010

Lyme'd pt 2

Well, for a while now we've been reconsidering the possibility that I may have Lyme disease. I was in fact bitten by a tick when I was 6 years old, got the classic bulls-eye rash that usually indicates you have Lyme, but my mom watched me to see if I got sick and I didn't. So she thought I was in the clear. Not very much was known about the Lyme disease spirochete so there's really not much she could have done back then based on my lack of symptoms.

A year or so later I was diagnosed with childhood migraines and for as long as I can remember I remember having a headache. Sometimes waking with one and going to sleep with one for months on end. Migraines would be 5 times a week when it was really bad and once a month when it wasn't so bad.

I also complained of joint pain as a young child but not to the degree that you'd go seek medical help.

So with what we had learned about Lyme disease in the last year or so (my sister-in-law and brother-in-law both have it), we began to feel a bit terrified that I may fit the bill for a Lyme patient. For a while we just brushed it under the rug trying to resist admitting it could be a real possibility for me. Lyme is not a pretty disease and especially untreated can lead to some neurological stuff that is just not cool.

After Liv was born in March, the fatigue started setting in. Then the joint pain came back again full force, and after a few months I noticed some twitches on one side of my body. Ugh. We prayed about it and discussed it a lot and decided we would need to get a definitive answer as to whether I had Lyme or not because catching it as early as you can helps in the treatment process.

There are only a handful of doctors who are really well-versed in Lyme disease (because it can look like so many other diseases) and truly know how to treat it effectively, especially in patients who have had it for years and not known it. There are some reasons why your regular doctor might not know how to treat or look for symptoms but it is a LONG story so if you want you can email me and I can point you toward some helpful resources to explain it all.

Through research and prayer we were led to Dr. J's clinic in Washington DC (if you ask me I can refer you to his website and there's a lot of Lyme info on there!). We felt that he and his P.A would be able to tell us whether or not I absolutely had Lyme disease. Going into the appointment we were both just trying to keep an open mind and be in charge of our health. We were armed with questions and were eager to learn about the science of the disease.

It was awesome. It was a 3 hour appointment. They sure took their time with us and were very thorough. It's serious business being diagnosed. They want to be sure.

We are going to be primarily treated by Dr. J's P.A. She's awesome! And confers with Dr. J so we get the benefit of two minds against my disease!

The examination was thorough and my entire medical history including blood work-ups and tests and biopsies, etc were looked through. A complete physical examination was done as well. I'm telling you, they were THOROUGH.

I don't know if it was a relief or a terrifying moment when they diagnosed me with Lyme. I wanted to tear up at how afraid I was of it and yet also sigh a sigh of relief that NOW we know and NOW we can treat and there's HOPE to feel better.

She said Lyme likes to hide in the central nervous system (behind/under your right ear) so basically all the joint pain I have is just the nervous system's response and not REAL joint pain. That's why it floats around to different joints. And also my headaches and general pain are nerve responses. Also my bowel issues that have never tested positive for anything wrong (no Celiac, normal colonoscopy, EGD, etc) can be attributed to a nerve response. So is my on and off nausea. It also would affect my reflexes and be responsible for some twitching that I've started having since Olivia was born. Also that upper abdominal pain can be explained by that too! So that's why all the pain meds I've tried have done NOTHING for the joint/abdominal pain because it's a nerve problem, not a problem that has to do with inflammation (what most OTC meds are for). Yucky, mean, Lyme Disease!

So she said what we'll do first is try to treat my symptoms and get my nerve system under control again so that my immune system can gather itself up again and better be able to fight the bacteria when they put me on antibiotics. So I'm going on a combination of 3 nerve-related drugs and supposedly this should take away my pain and headaches and help me get a better night sleep. Also a few vitamin/supplements to help prepare the body. Nothing weird.....I've heard of everything and it's sold in regular vitamin shops. Hopefully my immune system will get a boost and balance out a bit.

So after I get the symptoms under control, then they'll start antibiotics. It will probably be a 1-3 years regimen.

It will be HARD. The die-off reaction from the Lyme dying as the antibiotics work will probably knock me off my feet but they said their goal is not to do that to me but to do the minimal amount they can that still works. So I guess we'll just see how it goes. We're gearing up for it to be VERY hard and I think more so because we'll be moving somewhere in a month without a support system. *sigh*

Stress and anxiety can lower your immune system response so they said that for me it explains why I seemed to get way worse during times of stress -- after the gallbladder attacks after Georgie was born 3 years ago, then when Matt went to Iraq, and now after giving birth again to Livie.

They also said it's not uncommon for all symptoms to disappear during pregnancy like mine did. Something to do with the way hormones work with Lyme flare-ups.

Not yet even 2 weeks after being diagnosed, the Lord has thrown us a curve ball. Yes I was diagnosed with Lyme disease and there can be some pretty scary neuro symptoms to go along with it. We thought I was not anywhere close to experiencing those things yet. In fact, we were enjoying our vacation time out of state with family and actually thought I had a breakthrough! I woke up one morning WITHOUT PAIN and feeling somewhat 'normal'. This has not happened in a while. I was cautious but Matt told me not to be and just be so happy and thankful that the nerve meds must be doing their job. Further confirmation it IS Lyme we're dealing with here. Made me excited to hopefully start the antibiotic treatment soon so that we could kill the Lyme and I could go back to having a normal life.

And then out of nowhere - SMACK - we get a terrifying surprise. I'll spare you all the details, but as we stopped for lunch on our last day with our family before beginning the long multi-state drive back home, I collapsed in the IN-N-Out parking lot and had a seizure. I'm thankful someone was there to catch me. My brother had been helping me walk across the parking lot because I felt light-headed. So they (Matt saw me fall and came to help my bro) carried me back to the car as I convulsed (closer than the restaurant at that point) and Matt worked on calming down my breathing as I lay there shaking and twitching. Scary, no?

Now, we were thankful we had the diagnosis of Lyme and had seen our dear sweet sister-in-law and brother go through this. Because otherwise, we would have been baffled and probably looking for the nearest emergency room only to be told that they could find nothing wrong :) Instead, we knew this was definitely a symptom of Lyme and that while we were quite scared, we knew we could contact our doctor for further instructions.

We did and she was very helpful. Thankfully in my possession was anti-seizure meds (used for something else) that we were able to use whenever a seizure arose.

All that to say, for the last 5 or so days I've had at least one seizure a day. And also another lovely symptom has arisen - I walk like a drunken man. If I work REALLY hard I can walk somewhat normal but around the house I'm finding myself with jello legs, knocking haphazardly into walls and tables and occasionally falling over all together. Not to mention the random neck/head and arm twitches that happen most of the day.

This is TERRIFYING for us as you can imagine. Especially with me being the caregiver for our two little ones. We're having to think about what we're going to do about that. So far this week since Matt went back to work I've had help from friends and Matt has come back and forth from work.

We know our God knows every detail about this new trial in our lives and that it's no surprise to Him. He will provide for us and already has in ways we couldn't think of ourselves. Some things we're thankful for:

-a diagnosis before all this happened so that we weren't caught too completely off guard and didn't have to feel like there was another mystery to add to the already "mysterious illness" I had.

-anti-seizure medicine in my possession! Although I was on a dose used for something else, it is the same stuff they would give you in the hospital in a bigger dose if you have a seizure. This made our drive home a lot easier when I could "catch" the seizure before it got bad.

-humble, selfless friends from church who are willing to help us out right now.

-easy babies who have made life easy for me when I do have to be alone with them. Georgie's already learned that "if mommy falls, bring her THIS medicine". We'll see if she ever has to put it into practice! I hope not.

Around the house I've gotten good at holding on to things as I go along so I really haven't fallen much here. My sense of balance is getting better the more rest I get. I think just recovering from a month of constant travel and going will help with my symptoms.

We're hoping and praying this is a passing fancy. That in a few days I'll be back to the "normal" I was used to. Fatigue and pain are a lot less scary than convulsions, twitchy head/arm and a lost sense of balance. But we will accept whatever the Lord chooses to do with this situation.

Please pray for us and I'll try to keep you updated but don't be surprised if you don't hear from me for a while. Honestly this is the first time I've felt up to typing on the computer lately.

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