changes

It's been quite a week. And we've come to a pretty big conclusion.

Spencer will not be taking classes this spring semester. He will continue to work on his senior project, but that is all. We prayed, agonized, weighed our options, talked it over and over, prayed more, and sought counsel from wise people whom we respect. We made our decision, we have peace about it, and we firmly believe that it is the best thing for my health, our marriage, and our sanity.

It was an incredibly difficult choice, as we both firmly believe that Spencer should finish school, and we really want him to finish as quickly as possible. But after these nightmarish past five months of immense suffering, let alone the fact that our entire marriage thus far has been plagued by a seemingly endless "relapse," we knew something needed to change. We can't change the fact that I'm so ill, that Spencer needs to work to support us, nor the increasing medical expenses, many of which are not covered by health insurance. But we can control whether Spencer is in school.

We're both feeling relief, rather than dread, as we look at the months to come. Day to day life is still very difficult for us, as we try to cope with such a consuming illness, but at least we've removed something that demands a great deal of Spencer's time and energy. We both feel that this change will be a healthy, positive one, allowing us to better focus on getting me well. We pray that this would be a time of healing, recovery, and growth for both of us. We are planning on Spencer resuming classes this fall, hoping and anticipating that by then I will be stronger.

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As for my health status since going off of antibiotics... Not much of a change, but we have both noticed a few subtle improvements: An increase in mental clarity/energy. Feeling less like a dense fog is engulfing my thoughts. Feeling less like I'm dying. I noticed the most improvement early on this week, but have begun to slump back down a bit yesterday and today. I am slowly upping the dosage on the Cat's Claw, and those pesky bacteria are not liking it. There is a battle raging in my body. No wonder I feel so miserable.

So far, no notable change from all the new vitamins and supplements I added to my regimen. But I am confident that over time, they will help strengthen my body, especially my immune system, so that I can better fight of the Lyme. I am taking a ridiculous amount of capsules and tablets. It's quite an ordeal trying to get them all down - I'm a pro pill swallower, after many years of downing up to 30 pills per meal, but it is difficult with my shrunken tummy - I get full of water from taking the pills and then have no room to eat much of anything.

I think of my dear sister-in-law, Heather, as I type this, as she herself is struggling greatly with her health and has quite a shopping list of supplements to take, even more than me. Please, when you pray for me, please remember her too. It really is very strange that she and I would both be having such a rough time with debilitating, miserable symptoms that are so similar - we are both quite curious, wondering what God has in mind. Please pray she would get answers for the cause of her illness and that she would be healed!

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One last change. This one not so important, but I figured I'd mention it :)

I cut my hair. Very short. I've been gradually shortening it for quite some time, out of an attempt to keep it as low maintenance as possible. A week or so ago, Spencer helped me with trimming the back, and I gave him permission to go to town. Haha, he sure did. And I like it. It hasn't been this short since I was about 6:

Don't worry. I don't look nearly this silly now... I think.

I'll try to post a picture of the new 'do soon.

the latest in this Lyme adventure

This could turn out to be long and rambly and likely incoherent... If you aren't interested in rambling medical details, this might not be the post for you :)

My appointment on Thursday went very well. It was productive and we gained new, valuable insight. We didn't exactly get encouraging news - we learned that my body is even more broken than we thought and we also have new concerns about Lyme that we never would have imagined. BUT, despite the discouraging situation, we still did leave the appointment encouraged, hopeful, and refreshed. Thank you to all of you who have been faithfully lifting us up in prayer - God has been so gracious to answer our prayers about this appointment.

Spencer was able to get off work to come with me, which was such a blessing. It was also good for him to be able to meet my doctor – he was really impressed with her.

After hearing about how sick I have been, with no change except worsening of symptoms, my doctor decided that the antibiotics are too hard on my system – she said that my symptoms do sound like a “die off reaction” (herxheimer reaction), but that I should experience more variation in symptom intensity (ie 10 horrible days, then 10 bad days, then some more horrible days, etc), rather than 1 solid month of misery. She was also concerned about my continued weight loss. I had blood drawn on Monday because she has wanted to monitor liver function, since the antibiotics can be hard on the liver. Most of everything came back normal, but my bilirubin level was elevated and the past few days we have noticed that the whites of my eyes have yellowed – both indicators that my liver is struggling. It was good, ultimately, to get a month's worth of aggressive antibiotic treatment, but we decided no more antibiotics for the time being - it's just too much.

We discussed various herbal supplements for helping treat Lyme. They will take more time to fight off the infection, but my doctor really feels that this is the best course of action for now, seeing how poorly my body, especially my liver, tolerated the antibiotics. Today I started taking Cat’s Claw and then eventually will add in Cumanda – both very potent herbs that have been successfully used to treat Lyme. I will start off on a low dose and slowly increase dosage as my body tolerates. I was warned that once again, I will experience die off reactions and have periods of time where I feel MUCH worse, but my body should hopefully tolerate the herbs better than the antibiotics.

So much of what we learn about Lyme is both fascinating and discouraging. We both laugh about how after such a long time suffering from a mysterious illness, that I end up with one of the most controversial illnesses in the medical community. There is still much that is not yet understood about Lyme, and we continue learning more and more implications about how Lyme could impact our lives - it's been discouraging and even alarming, but we're trying to take each day as it comes. Oh, how we long and pray for me to be well!

Spencer and I both appreciated how easy my doctor was to talk with and how concerned she was for me. Spencer had an interesting observation - he said that she reminds him a lot of my Aunt Ann, my Dad's sister. The way she spoke with me, listened to me, and studied me - with compassion, wisdom, and humility. I must say I agree with him now that he pointed it out, and to have a physician who treats me like my Aunt Ann does is a very good, blessed thing :) She spent a long time with us, answering all of our questions, discussing alternatives, genuinely eager to make sure we are both comfortable with our options and that we receive the best possible treatment. We feel so blessed to have found such an excellent physician.

We also went over some blood test results for vitamin and mineral deficiencies. We learned that I have a significant deficiency in vitamin B-6, zinc, chromium, glutathione, alpha lipoic acid, and serine. It’s interesting that I have been already taking several of these supplements, yet my body has been unable to absorb and utilize them. We discussed some options to help my body better utilize these supplements as well as additional supplements that would be helpful. The test results also indicated that my body does not regulate insulin and glucose levels correctly, thus predisposing me to hypoglycemia and even insulin resistance. This is something that I have suspected for some time, so, while I wish I didn’t have this problem, I am glad that I suspected it and had already been doing the things recommended for insulin resistance (low glycemic index diet, various supplements, eating small, frequent meals) and will continue to do so. Hopefully, supplementing with chromium will also help, since I have been deficient in it, and it is a crucial element in the regulation of insulin and glucose.

We discussed various ways to better support my liver and immune system, and also helpful foods to focus on, since I’ve continued to lose more weight due to a non-existent appetite and severe nausea – it has been very difficult for me to eat more than a few bites per meal, so we have been concerned about me getting adequate nutrition.

I also got a prescription for a stronger pain medication, since tramadol often times doesn’t relieve my pain enough to allow me to sleep more than a few hours in a night.

I think that about sums it up. There's more, but for now this is what I'm going to share. Please keep praying for us. Our minds are spinning with all that we are learning, processing, and deciding. Our hearts are hurting and lonely, but hopeful. Our bodies are worn out - mine ravaged by Lyme, Spencer's from working long hard hours, only to come home to a very ill wife who needs him to cook, clean, run errands, and help her with basic tasks that she often cannot do on her own, like bathing or even walking from one room to another.

We have a LONG ways to go, but we are very thankful to have such a thorough, knowledgeable, and compassionate physician to work with us on the road to recovery. And far better, we have an all powerful, all knowing God Who loves us deeply and will NEVER forsake us. We are continually humbled by His faithfulness to answer our prayers and provide us with what we need.

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. - Jeremiah 29:11

My flesh and my heart may fail,
but God is the strength of my heart and my portion forever. - Psalm 73:26

He has made my teeth grind on gravel,
and made me cower in ashes;
my soul is bereft of peace;
I have forgotten what happiness is;
so I say, "My endurance has perished;
so has my hope from the LORD."

Remember my affliction and my wanderings,
the wormwood and the gall!
My soul continually remembers it
and is bowed down within me.
But this I call to mind,
and therefore I have hope:

The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
"The LORD is my portion," says my soul,
"therefore I will hope in him."

The LORD is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the LORD.
It is good for a man that he bear
the yoke in his youth.

Let him sit alone in silence
when it is laid on him;
let him put his mouth in the dust—
there may yet be hope;
let him give his cheek to the one who strikes,
and let him be filled with insults.

For the Lord will not
cast off forever,
but, though he cause grief, he will have compassion
according to the abundance of his steadfast love;
for he does not willingly afflict
or grieve the children of men.
- Lamenations 3:16-33

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.

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.