a moment of clarity

Today I am more mentally alert than usual. I'd better take advantage of this clarity, as it's been a rare thing lately.

I have spent this past week crumpled on the couch in immense pain and overwhelming nausea, only able to get up for trips to the bathroom. It's been a miserable existence for me. At least this misery is a good sign - it means the antibiotics are doing their job and are beginning to kill off the Lyme critters - otherwise known as Borrelia burgdorferi.

Spencer and I are continuing to educate ourselves about Lyme disease, reading through scientific journals, websites, online forums, etc. We really want to see the recently made documentary about Lyme, Under Our Skin. It's probably not going to play in our area, so we'll have to wait until it is released on DVD, but if it's playing near you, check it out! Click here to view the trailer.

Spencer has been working hard for our landlord this week, ripping out old flooring, installing new flooring, replacing toilets, and other handyman stuff. It is such a relief for him to come home from work and NOT have to study. We are sure savoring this school-free month.

This Christmas, it will be just the two of us. Traveling is incredibly taxing for me, so we're going to lie low and stay in northern CA.

hoorah!

As of 10 AM today, Spencer is DONE with his fall semester. He is one happy man :)

I am so proud of how diligently he has worked and am thankful to God for sustaining him throughout a very demanding semester.

We are both giddy with delight - he now has a (much needed) whole month off from school.

lyme disease

The following has taken me five days to write. I am struggling immensely with pain (my normal, long term joint and muscle pain as well as shingles) and severe fatigue and have a very difficult time concentrating. I hope it makes some sense and better explains where we are at with my recent diagnosis.

Back in 2001, when I first started struggling with severe headaches, nausea, and crushing fatigue, I was tested for lyme disease. The test came back negative. So whenever I'd see a new doctor about my mysterious illness that no one could figure out, they'd ask, "have you been tested for lyme disease?" "Yup. It was negative." "Oh, okay. We can rule that out then." So, I figured they knew what they were talking about and didn't give Lyme much thought.

It's not that simple though. There is a two step testing system for Lyme - with major flaws. If you test negative in the first test, you are not tested any further. I tested negative for the first test back in 2001, thus no one bothered to look any further into Lyme disease. However, it has become increasingly evident that the first test is not specific enough to be accurately used as a "screening" test:

The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity. - International Lyme And Associated Diseases Society

Crazy. It honestly makes no sense. For more info about the testing protocol and the basics of Lyme disease, click here.

Additionally, many of my previous doctors asked me if I ever had the characteristic bulls eye rash that goes along with lyme disease. Nope. When I'd tell them I never saw one, they would completely discount lyme disease, saying there was no reason to do further testing if I didn't recall a rash. Thing is, 49% of patients with lyme disease never report a rash. Hmm.

This time around, my doctor decided we should go for the second, more specific test so that we could know for sure whether Lyme could be ruled out. I'm thankful and glad she wanted to follow through with this.

The conversation I had with my physician last week and the brief research I have done so far blows my mind. This area of medicine is severely lacking and misunderstood - there is so little known about lyme disease and a good deal of controversy over diagnosis and treatment. Am I ever thankful to have found a doctor less than 5 minutes from my front door, who is so knowledgeable and up to date about this particular disease.

Treatment will not be easy or quick, as I have most likely had lyme for years. It is very likely that I picked it up the summer of 2001, right before my symptoms began. I spent a good deal of time that summer hiking and camping - plenty of opportunity for exposure to ticks. This is a chronic infection that has embedded itself in my body and it will be difficult to kill off. I started antibiotics last week and will be on them for several months at least. Many people with chronic lyme disease have to go through treatment lasting up to 1-4 years. And even after such long term treatment, there is no way to tell if you are cured. A decrease or disappearance of symptoms is often referred to as "remission." Many people with chronic Lyme have relapses.

Please pray for us, as treatment could be tough. We may have a diagnosis, be we are far from being out of the woods. Many lyme patients get much worse during treatment before they begin to feel better. As the bacteria are killed during treatment, endotoxins are released and can make you feel much much worse. Since I have had this infection for so many years, we also don't know how much permanent damage has been done. There are a lot of unknowns. The things that we have learned about chronic lyme disease thus far have been sobering and disheartening. I must confess that I am struggling with coming to terms with having this diagnosis. I'm immensely thankful for a concrete answer, but anxious and intimidated about what lies ahead. We're trying to take each day as it comes and trust that God is 100% in control.

My dear, sweet Grandma Betty sent this to me a while ago, and I feel it is so applicable right now:

Not so in haste, my heart! Have faith in God and wait;
although he linger long, he never comes too late.

He never cometh late; he knoweth what is best;
vex not thyself in vain; until he cometh, rest.

Until he cometh, rest, nor grudge the hours that roll;
the feet that wait for God are soonest at the goal.

Are soonest at the goal that is not gained with speed;
then hold thee still, my heart, for I shall wait his lead.

--Bradford Torrey, ca. 1875

what I learned today

First of all, I've got a lovely case of shingles. It's been a rough week, to say the least. I've been struggling a great deal with intense, relentless pain in my joints and muscles, overwhelming fatigue, a cold that I can't seem to fight off, and then a nasty batch of shingles got thrown into the mix. We're certainly being kept on our toes :)

This afternoon, after confirming with my doctor that I do indeed have shingles, we went over some of my recent blood test results. Most stuff came back nice and normal. Hoorah. I did, however, test positive for lyme disease.

Wow.

I would like to further elaborate, but in a nutshell, this is big news. It's very possible that I've had lyme disease for years, wreaking havoc on my immune and nervous systems. At this point it is not clear whether I still do have fibromyalgia and chronic fatigue syndrome - lyme disease very well may be part of the underlying culprit that "triggered" the development of both syndromes. As I go through treatment, we'll hopefully get a better picture of just how much of a role lyme disease has played in my health struggles.

l will try to post a more thorough update and explanation as my energy and painful fingers and wrists allow.

Please keep Spencer in your prayers this upcoming week! He has a big paper and another project due next week, as well as finals. He has been working so hard juggling school, work, and taking care of me, and is quite exhausted.

My dear, sweet mother is staying with us this week to help out. What a blessing she has been to us! Little did we know just how much we would need and appreciate her help during this hectic, draining week. It has been so helpful and encouraging to have her company and to have meals prepared, dishes and laundry washed, etc so that Spencer can focus on finishing up a very demanding semester. We are so very thankful and blessed.

a year and a half

Today marks eighteen months of marriage for us. These eighteen months have been extremely painful and difficult; not exactly what we envisioned or planned. But they have also been far sweeter and more beautiful than we ever could have anticipated. Each day I fall further in love with this man whom I am so blessed and privileged to call my husband. Looking forward to all that's to come :)

Thank you so much for the encouraging, heartfelt comments in my previous post. It means such a great deal to us and we truly appreciate your prayers.