Living With Chronic Lyme Disease

Bartonella - The Insidious Monster!

2011-11-08T09:49:00.003-06:00

So, here I sit with unrelenting, multitudinous pains filling my body from head to toe. Sure, the Lyme bacteria might be gone, but the Bartonella is a whole new story. It's so deep in my neurological system that I wonder if it will ever die off. I feel hot on the inside while the nerve endings in my skin try to convince my brain I'm cold. Chills race up and down me now and then, but I have no fever. The prickly, tingly, itchy, numbing sensations are body-wide and will not go away.

I quit taking my antibiotics for a month because the pancreatitis was acting up again and my liver wasn't too happy. Like it or not, I'm going to have to start them back up. So many pains different and distinct from one another. Its exhausting to deal with. Its enough to drop a grown man to his knees. I'd love to crawl in my bed and stay there for days. Why is it that any normal bacterial infection is considered life threatening, yet this is not? (It's an intracellular parasitic bacteria.) So, I'm not running a fever. Could it be that my immune system is too low and too whacked out that it doesn't know it should be running a fever?

I've been struggling much with anger. I'm tired of fighting a losing battle. I was supposed to be done with treatment. I knew I wouldn't be but how do you tell a doctor that? Of course, it doesn't help that I only see him twice a year. I'm considering finding someone local. I just dread all the tests they'll want to run with the diagnosis coming back "normal." What am I to do? I have no idea. I don't want to run up unnecessary medical bills. I only want the necessary ones. Don't really want them, but I'll gladly pay for services that help.

Its rather frustrating to know there are bugs inside me, killing me slowly and there's really nothing I can do about it. Its frustrating to know that people don't get it and look at me like I've lost my mind when I try to explain it. After all, I look healthy. Right? What could possibly be so bad about this disease? If there really is a disease, that is...

I know God has a purpose in allowing this, but that doesn't make the pain less painful, the fatigue less tiring, or the emotional state less spastic. It doesn't help me get the dishes done. It doesn't cook dinner for me. It doesn't keep up with the laundry and vacuuming and picking up for six people. It doesn't meet my family's needs. I still have duties to fulfill. I still have to live - all the while my body is dying a torturous death that nobody else can see or ever fathom (except those who are suffering with the same).

Lately, joy and hope have evaded me. Even "there is a season for every purpose under heaven..." doesn't bring me comfort. At one time, it brought me hope that this was indeed a season in my life and I would one day be healed. But now it seems as if my whole life will be stuck in this season. That death is the only escape. And I don't want death to be just an escape. I would much rather look forward to being with Christ than look forward to escaping a living hell.

But what if my whole life is to be stuck in this season - this torturous existence? Am I willing to endure to the end? How do I find my bearings to get through life in a way that glorifies my Lord? Will this bitterness ever go away? I don't want to be a bitter angry person. I want to experience joy and hope again. I don't ask for all the world has to offer. I just want to live. But I don't know what that looks like. How do I live when I'm barely surviving? I feel like such a failure in everything I do. I'm handicapped, yet nobody really knows that but me. People expect things. If you don't live up to those expectations, you're seen as self-centered, lazy, neglectful... not a good Christian wife and mom.

I'm tired of always needing and never being able to give back. Is this pride? I don't know. I want to do for others, so I don't think its totally pride.

I was thinking yesterday on the way home from the pharmacy... I was saved at such a young age that I never experienced what many do - the full weight of their sinfulness. So, I wondered. Disease is a result of sin - the fall of man. Is this God's way of showing me how horrible and destructive sin is and how all-encompassing the effect of sin is? Or does he simply want me to bear others' burdens with them, to be able to comfort and encourage others who struggle with the illness? I don't know.

I know he is surprised by nothing. I know he is always good. I know he takes everything bad and makes it beautiful in its time. I know he never wastes pain. I'm just struggling with how to live a life pleasing to him, a life looking forward to glory, a life showing his love to others when I can barely raise my own head. When the suffering becomes so great that I am forced to think of myself and the moment, taking away from what I could be doing for others.. How do I live a life for Christ in an isolated existence? Is this the cross Christ has given me to carry? If so, to what purpose?

So many questions - God isn't obligated to answer any of them. So many tears - there seem to be no end. So much pain - no hope that it will ever go away. Until heaven. If only I could catch a glimpse of glory big enough to sustain me, to give me the hope I need to endure until then...

~Forever His...

A Never Ending Battle

2011-09-21T11:59:00.000-05:00

Where do I begin? It's been so long since I've talked about treatment. I was supposed to be done now. In fact, the doc believes the Lyme bacteria is gone, but we're now fighting a co-infection. Bartonella. It's an ugly monster. In fact, my cat died a miserable death because of it. And of course the insurance doesn't want to pay for the very specific antibiotic for Bartonella. My sons and I need it. The other antibiotics are only keeping us functional.

Ever feel like your nerve endings are all on fire? You know? Like when you're out in the cold for a prolonged period of time and then enter a toasty room? That sting... That fire... That numb type pain... That's ONE of the many things I live with day in and day out. All over my body. Even my face and scalp. Sometimes it gets a little itchy feeling too.

My sons , A and M, have Tourette Syndrome type symptoms. It doesn't seem to bother M too much at this juncture, but A is fully frustrated. I am frustrated. It tears my heart out to see my son suffer with something he has very little control over! It is with him every minute of every day and he gets so tired of fighting it. If you don't know anything about Tourette Syndrome or OCD, you can't understand. Imagine having an itch in a bad spot while you're on stage in front of whoever. You're there for all to see and you can't scratch that itch. You can suppress the urge for a while, but you know that eventually you are going to have to scratch it. Not just rub it or pinch it or scratch it through your clothes. You have to make contact - nails to skin, or it won't be satisfied. That's what it's like. Your brain is telling you to twitch or jerk or roll your eyes or whatever. Then, the OCD part says you have to do it exactly the way your brain says to do it or you have to keep trying until you get it right. Because you're smarter than your brain signals, you can suppress the urges for a while but eventually you have to obey. You have to scratch that itch. That's the hell my son lives with every minute of every day thanks to these microscopic bugs that are hard boogers to kill! BTW - You can read about Bartonella here. Keep in mind, they are still investigating. They don't know all there is to know about the parasite yet. Like many don't realize it can cross the placenta and infect a baby.

Anyway. So, I'm on two broad spectrum antibiotics because I can't get the one I need. I'm having re-occurring yeast issues and now have to go on medication for that. I go in three weeks to have my liver function tested. I still deal with Fibromyalgia. Imagine you just climbed a mountain of stairs and your legs are tight, sore, exhausted, weak, now straining with every step. I feel that all over just sitting in this chair. I can't walk across the room without that straining soreness in every step. I can't hold a book without feeling it in my arms. I can't type without feeling it in my hands.

I now deal with joint pain, as well. Respiratory issues come and go all year long. I have no idea what it's like to take a single step without my feet hurting. The only time I'm without pain is when I'm in a dead sleep. Thank the Lord I do sleep! A lot of Lymies don't sleep well.

C still has Fibromyalgia type soreness - mainly he stays sore longer than healthy people after he works out. But. The martial arts seem to give him that low impact muscle building that gymnastics did when he was young. So I'm thankful for that. He still gets fatigued faster than healthy teenage boys and he still gets his chronic throat infections when he's over-done. He deals with allergies in our new environment that he didn't have back home, so I have to watch that closely every Spring and Fall, now.

A, as I said, suffers with the Tourette Syndrome. He also has fibromyalgia type pain and now his joints are beginning to hurt. His asthma and eyesight are getting worse. It's not fun.

M has developed Tourette Syndrome tics over the last few years and is now pronounced enough the doc put him back on treatment. He has asthma and allergies, and nerve spikes in his chest now and then that scare him.

G is not yet being treated, but I need to get him on some over the counter stuff I have. It's just so hard remembering everything for everybody with my brain turning more to mush with each passing week. I used to remember everything and now get things confused, backward, or just completely forget. It's very frustrating. G has chronic headaches, chronic fatigue, and poor appetite most of the time.

Born with congenital Lyme (meaning they got it from me in the womb), my boys have never known a moment of life apart from Lyme disease. From the moment they were conceived, the microbial monsters have invaded their bodies. I wonder if they will ever be totally healthy or if the microbials have scarred their bodies forever... become in a sense a part of their DNA.

I would not wish this illness on anyone. Yet, God uses it to mold us and shape us into what he wants us to be. I know my three big boys have a relationship with God that is quite unusual for most teenage boys. When you have so little control over things, self-reliance gets stripped away. When you're constantly fighting to survive, you become strong in ways you wish you never had to learn to be, but you're stronger nevertheless.

Can you tell I'm tired today? I still deal with the pancreatitis. Addison's can kill me if I forget to take my hydro-cortisone enough times. It's getting to a point where I can feel pain in nearly all my internal organs. I had a bad time of it with kidney stones this past spring. I'm sure I haven't passed them all and I do feel pain in my kidneys. The headaches are just weird. Migraines... Tension... Both... Then there are the moments when my brain feels warmer than its supposed to be. Yeah. Not fun! I'm glad God knows all about it even if the doctors don't!

I think I've rambled on long enough. Its not as systematic as I usually write, but I just kind of needed to vent today. I hope you don't mind. I must say if you made it all the way to the end of this post, you must either suffer like I do, love someone who suffers the same, you're OCD and have to finish what you start, you're highly curious and must know all, or you really love me and mine. Because nobody likes to read about painful things. Not unless there's a guarantee of a happy ending. Whatever the reason, thanks for keeping up with us, but thank you more for you love, support, interest and prayers! God bless you!

God's Will for My Life

2011-06-07T17:30:00.002-05:00

The storm raged high, threatening to capsize the boat. Scared out of their minds, they cried out to God for mercy. Where was Jesus when they needed Him most? Surely He knew this storm was coming. Frightened, confused, and in great despair, they looked up and saw a ghost. The fear gripping their hearts froze the blood in their veins.

Knowing their terror, Jesus said, “Don’t be afraid. It is I and not a ghost.”

Peter said, “If it’s you, Lord, let me come to you on the water.”

Jesus said, “Come.”

With the storm still raging high, Peter stepped out. Keeping his eyes on Jesus, he walked and did not sink. Then, fear set in. Peter took his eyes off Christ and began to sink. Looking up, he cried out, “Lord, save me!” Taking him by the hand, Jesus rescued him and walked him back to the boat.

I am Peter. I walk through the billows of life and am buffeted on every side. The wind of pride knocks me flat. I look to Jesus and He picks me up. Thunderous uncertainties and confusion deafen my ears. Jesus whispers peace and healing begins. Lightning strikes of fear pierce my heart. Jesus lays hold of my heart and heals me again. The billows of grief, pain, and suffering engulf me and I am drowning. Jesus reaches down, picks me up and carries me.

Is this God’s will for me…to live like a cork in the water, bobbing my way through life?

My church’s doctrinal statement starts out with this question, “What is the chief end of man?” It then answers, “Man’s chief end is to glorify God and enjoy Him forever.” The next question is, “How do I glorify and enjoy Him?” It answers, “By loving Him and doing what He commands.”

But, what does that mean? What does that look like in the midst of a storm-tossed life?

I’ve spent many hours, days, months…even years trying to find a satisfying answer. What is God’s will for my life and how can I fulfill it?

One Sunday while zoning in and out of my pastor’s sermon, he said something that snatched my attention:

“God’s will for you is to obey Him.”

Wow! What a simple, yet profound statement. It pierced my heart and peace flooded my soul. I realized that it’s not about a particular calling or occupation. It’s not a checklist of do’s and don’ts. The heart of the matter is an obedient heart.

Whether it’s submitting to a day of pain, keeping to a regimen of medicine, getting necessary rest, encouraging your child to trust God in the midst of illness, hugging a hurting friend, giving words of encouragement, or attending church when able – there are a gazillion ways to obey God. It’s taking things as they come…a day, a circumstance, a moment at a time and obeying Him in the midst of it.

Will we have frantic moments? Yes. We are frail humans.

Are we doomed if we cry out “why” and beg Him to remove our suffering? No. Though He submitted to the Father’s will and followed through, even Jesus cried out, asking God to remove the cup of the cross from Him.

Are we repulsive to God when it’s all we can do to just get through the next moment? No. God’s word encourages us to live day to day, moment by moment and to not worry about what tomorrow brings.

When we do falter and sin, we need to remember that there is abundantly more grace in Christ than there is sin in the world. We are to bathe ourselves in His grace.

We must not shut off our hearts from God. We must not quench the voice and comfort of the Holy Spirit. We must not try to wade through life on our own.

We need to let down our guard and be vulnerable with God. We are to follow Christ’s example, cry out to God for help, and allow the Holy Spirit to speak wisdom and comfort to our hearts. He may not take the storms away, but He will carry us through the midst of it.

Jesus said to take up our cross and follow Him. Follow where? Follow Him in obedience no matter what sea-tossed life God places us in.

Does that mean the ill should not seek medical help, the jobless refrain from job-searching, or the parents of a prodigal give up on their child returning? Absolutely not! God commands us to take care of our bodies, tells us that the idle man does not eat, and displays the loving patience of a father waiting for his prodigal to return.

It does mean that we submit each moment of our lives to God. We must trust Him to do what is best for us and watch in wonder as God makes everything beautiful in His time.

As I ponder God’s will for my life, I admit that I have to swallow a lot of pride, returning to Him again and again for forgiveness. Why? Because I don’t always want to submit to His will. Life hurts. It isn’t easy to live day to day not knowing if tomorrow will be a good day or a day when the waves come crashing in. I want to buck against the pain and sear my heart until I don’t hurt anymore. It’s tempting at times to walk away from God and never look back.

But, in my heart of hearts, I know that life without Jesus is worse than the most horrendous pain I’ve ever endured. The agony of not being able to feel is more torturous than pain itself. Life without Jesus is not life at all, but a living death – like Lyme disease, only unimaginably worse.

As part of God’s will for me, I open my heart to you so that I may share in your suffering. I want to help carry the load you bear. As a teenager, I was inspired by a song which says, “I want to spend my life mending broken people. I want to spend my whole life removing pain. Lord, let my life be a light that shines. I want to spend my whole life mending broken people.”

So, if opening up my heart can help carry even one hurting person through the storms of life, I praise God for using my feeble efforts. May He bless and keep you through every storm.

How has the Lord encouraged you in the storms of your life?

OVER THE EDGE - Coming May 1st!

2011-02-22T09:20:00.000-06:00

MUST READ! Seatbelt Suspense Author Brandilyn Collins' novel, "Over the Edge," will be out May 1st. You can pre-order your own copy at a special price.

Here's the back cover blurb:

Janessa McNeil’s husband, Dr. Brock McNeil, a researcher and professor at Stanford University's Department of Medicine, specializes in tick-borne diseases—especially Lyme. For years he has insisted that chronic Lyme disease doesn't exist. Even as patients across the country are getting sicker, the committee Brock chairs is about to announce its latest findings—which will further seal the door shut for Lyme treatment.

One embittered man sets out to prove Dr. McNeil wrong by giving him a close-up view of the very disease he denies. The man infects Janessa with Lyme, then states his demand: convince her husband to publicly reverse his stand on Lyme—or their young daughter will be next.

But Janessa's marriage is already rocky. She's so sick she can hardly move or think. And her husband denies she has Lyme at all.

“Welcome to the Lyme wars,” Janessa.

Click to read the prologue to "Over The Edge."

~Linnette R Mullin

Exciting News for the Lyme Community!

2011-02-08T09:07:00.000-06:00

Best Selling Seatbelt Suspense Author Brandilyn Collins enters the public arena with her first ever novel on a character suffering with chronic Lyme disease. "Over the Edge" comes out in May 2011. As soon as I receive my copy and read it, I'll post a review and links where you can get your own copy.

If you are a Lymie and would like to share your story, contact Brandilyn (or me if you can't find your way to her). As part of her awareness campaign, between now and her release date she is posting Lyme stories. As a thank you, she is giving away an autographed copy of "Over the Edge" to every Lymie who shares their story on her blog.

I am her guest today. If you'd like to read my condensed Lyme story, go to "Over the Edge." I'll check in from time to time at the comments box to see if anyone has comments or questions for me.

Thanks so much for visiting. Have a blessed day!

~Linnette R Mullin
Author of Life Changing Romance

Lyme Update

2010-12-24T15:45:00.002-06:00

After months of suffering from severe headaches among many other symptoms, I finally have what I hope is good news. My doctor said that all of my symptoms point to the Bartonella infection. and that I am herxing from Bartonella die-off. He wants me to take a break from the antibiotic until the middle of January and then start a new one to take for three months. It is his opinion and hope that at the end of the three months I will be symptom free. I've been on antibiotics long enough that he believes the Lyme infection should be gone and once we take care of the Bartonella bacteria, I should finally be well. Let's hope and pray!

Merry Christmas and Happy New Year!

~Linnette

The Loneliness of Lyme

2010-12-01T08:37:00.000-06:00

I lump my Lyme blog readers into three basic categories: 1) those who are curious; 2) those who are chronically ill; and 3) those who truly care and want to know. So, forgive me if you read anything shocking here or if you find a different Linnette than you're used to seeing. It's not that I'm two different people. It's that I've learned that most people don't really want to know, so I protect them from the reality of my debilitating disease as much as possible (and I've decided that this blog will be my dumping ground).

No. People want to see my smile. They want to take comfort in that I'm a strong and happy person. Nobody likes to deal with needy people, after all. They're too inconvenient. Too demanding. Too self-absorbed. Can't participate in the normal give and take of relationships.

Maybe the current administration has it correct. Maybe we should euthanize those who aren't healthy, those who burden rather than contribute to society. Put us all out of our misery and yours. Wouldn't that make life so much simpler for all? Then, healthy people can live happy lives, unencumbered by those who hold them back from living a full life.

I'll be the first to agree that euthanasia is murder. But, sometimes when you get to feeling desperate you have thoughts enter your brain that you would never otherwise consider in a million years.

Deitrich Bonhoeffer said, "We must learn to regard people less in light of what they do or omit to do, and more in the light of what they suffer." Now, here was a man who knew what it meant to suffer! This quote gives me a kinship with him that I have with few.

I realize I'm self-absorbed. I try not to be. But, how do you deal with being sick all the time and not become a little selfish? People sympathize with cancer patients, diabetic patients, heart disease patients - even mono patients and fibro patients are starting to become more understood. But, Lyme disease? An illness you can't see with your eyes? An illness that simply makes you look lazy and self-absorbed? An illness for which there is little proof or help or relief? No. Lyme disease leads to a very lonely life. Sick people fighting to live normal lives yet get knocked down because we don't appear to be trying hard enough - when in reality we're giving more of ourselves than anybody.

A friend asked me one time how I keep from shooting myself and my family (since they are ill with Lyme, too). He asked half in jest, but there was a glint of frank seriousness in his eyes. It threw me for a moment. I'm not used to people taking me seriously and being so sympathetic. My only answer to his question was and is God's grace.

So, what brought all this on? Weariness with it all. Tired of putting on a facade for a world that doesn't care anyway - even though that facade is more armor against emotional and psychological pain than anything else. But, the naked truth is I'm weary of the pain, the neurological symptoms, the weakness, the fatigue, the loneliness, the vulnerability, the having to say "I can't" or "I don't feel well enough" or "that would take too much out of me and make me ill." I'm tired of rejection over something I have no control over. I'm tired of the guilt that consumes me for not being the wife and mother and friend and hostess I'm supposed to be...that I want to be. But, there is no escaping. It's everpresent...a living hell.

More Lyme Complications.

2010-11-02T18:45:00.000-05:00

This post is to document my symtpoms. You're welcome to read and even comment, but I warn you that it's not a pleasant post. It's simply a list of various pains and other symptoms at this time. Hopefully, I'll find a doctor locally who can help me through this.

Things are getting worse. Slowly, but steadily. They are always worse at night. I can't even lay down without a headache/migraine coming on. Most of the time my entire skull feels like its in a vise-grip with the migraine adding to the pain (it seems to be bringing on my TMJ pain again). The Advil only takes the edge off - 800 mgs at a time. The migraine med works for the most part, but I get that awful aching/neuro sensation throughout my body. The more the pain drains from my head, the worse the aching/nearo sensations get in my body. It leaves me weak, shaky, and so stiff feeling that sometimes I just want to cry. Sometimes, eating will calm the shaking a bit, but it doesn't take care of it completely or for long.

I get out of breath very easily - just walking across the room. I've only had a few episodes of light-headedness, but one a few days ago made me dizzy for a good 30 seconds before it settled to wooziness. I had to hold on to the counter to keep from tipping to the floor.

My chest walls hurt and feel heavy, my throat swells off and on. My neck, shoulders, and base of my skull are increasing in pain. Sometimes, I get this burning deep inside my head that almost feels like a sinus infection, only deeper, further back in my head. My sinuses hurt in different places, too, and my eyes burn.

My elbows and knees (especially my right knee) have been bothering me. My elbows are so weak that it hurts to pull laundry up out of the dryer and I'm almost too weak to do it. Laundry is usually one of my more enjoyable chores, but even folding clothes causes aching, tiresome pain.

I'm tired, but I don't sleep well and wake up early morning with some degree of a headache - usually bad. I'm running a low grade fever off and on. I'ts only 99, but its enough to make the inside of my head hurt worse. My eyeballs get so sore when the headache is bad that I can hardly stand it - my vision gets blurry, as well. When my throat swells and hurts, it travels as far as my ears - nearly unbearable when the pain is at high intensity. My nose becomes congested on and on, too, making it difficult to breath. My throat dries out quickly when I can't breath through my nose and gets really sore and scratchy.

I'm so weak right now that I can barely walk or even stand. Garrison coming up and hugging me causes my knees to want to buckle. My leg and thigh muscles are also starting to pull tight - almost like when you haven't used them in a while. I sit a lot, but I also get up a lot. My limbs fall asleep easily - I can't hardly find a position to put my arms in when I sleep that won't cause them to fall asleep.

I'm back on the enzymes. I started buying them a week at a time. I still haven't called the insurance company. I haven't had the energy to deal with it, but I need to. My pancreatitis is acting up. I've lost nearly ten pounds (not that I miss the weight) and have difficulty eating due to either nausea or pain or both. I've also developed sharp pains in the pit of my stomach and wonder if the meds are hurting it.

I have small muscle twitches now and then in my fingers, leg, arm...but that's been going on for the past year or more. It has slowly increased over the course of the year, but it doesn't seem to be major, yet.

I'm truly so very tired of dealing with this. Sometimes I think the pain will send me over the edge. If it didn't fluctuate in intensity and give me brief reprieves, I don't think I could stand it. I nearly had John take me to ER this morning. If the migraine med hadn't helped, I probably would have. But I don't like ER doctors. They're trained for trauma and tend to scoff at my complaints.

My husband suggested that I might go back home so my doctor can hook me up with the right specialists - ones he trusts. I told him we would try here first. I'd have to take my 5 year old with me and find someone to keep us since missionaries are occupying our house. Plus, I'm not sure I could make that trip right now...flying or driving. But, I will do that if I don't feel like I'm getting the help I need. I have a high tolerance level, but I really am about at my limit.

If you've read this entire thing, you're either a very curious person or someone who really cares. Either way, thanks for taking time to listen.

Living Death

2010-10-31T19:57:00.000-05:00

"We are silently, literally fighting for our lives and not many understand that."

This came from a letter a friend wrote me recently and how right she is! Just when I feel like I'm making some progress, another complication arises. I'm tired. I'm weary. The pain is often more than I can bare. When will it end? If I have to live the rest of my life with this kind of pain, I'm not sure I can do it. I don't even know how I face tomorrow sometimes.

We Lymies live death every day of our lives. Our bodies are dying a slow tormenting death while we struggle and fight to live. Do I sound morbid? I'm not trying to, but this is where I'm at in my illness right now. Tired, weary, and yes a little scared.

Blowing in the Wind...

2010-10-18T11:01:00.000-05:00

The background picture I chose for this blog is the dandelion. It reminds me of the fragility of life and the Scripture verse that says, "...the grass withers and the flower fades..." This is how I so often feel. Like a fragile flower blowing in the wind, exposed to the elements, waiting and wondering how long before I completely wither.

One of my favorite songs is Who Am I by Casting Crowns. It expresses my feelings so fully. When I saw Casting Crowns in concert and they had an autograph session following, I told Mark, "It's as if you wrote this song straight out of my heart."

I'm facing what many Lyme patients have faced for years - denial of necessary medication by my insurance company. Up until now, I've been blessed to have my meds covered. Now, I'm in need of pancreatic enzymes for Sub-acute Pancreatitis and my insurance doesn't want to pay for it. These enzymes are specific to my ailment and the only way to keep my pancreas from being destroyed, along with other vital organs. So, on to the battle field with my insurance company. I'm praying they will relent. We can't afford to pay for this medicine, nor can we afford for me to go without.

I do see some progress due to my Lyme treatment. Even having the Pancreatitis and Addison's disease, as long as I keep medicated for them, I have more energy than I once did. I'm still in the category stage 3 of Chronic Lyme, but I'm hoping with time, patience, and treatment that I will be well someday.

My boys are doing much better and for that I'm thankful! I just pray they don't relapse.

One thing is certain, this disease sure does keep my heart closer to heaven than to this life. What would I do without God? I need Him more and more with each passing day.

Sometimes Realism Stinks

2010-06-09T20:07:00.000-05:00

Warning! This post is not for those who don't really want to know. However, if you want to step into one of my bad days with me, keep reading.

It's been a rough day. We had a terrific storm that came through yesterday and the barometric pressure that came with it was astounding. The head-to-toe bone-deep achy pain was nearly unbearable. If you've never had severe chronic pain, you have no idea how exhausting it is to fight and work against the pain, constantly, day in and day out, every minute with no relief or end in sight. It can become quite maddening. Death becomes more desirable than living.

As the day wore on today, the pain eased a tidbit, but the exhaustion is such that I've been weepy and irritable. It's a weird exhaustion - not a healthy one. I get up to do the least little thing and sweat starts pouring as my body overheats. This is not an everyday experience, thankfully. But there are days like today when I can't do anything without perspiring bucketfuls. The only good thing is that it seems to work some of the toxins out of my muscles and makes them a bit less achy (but only the muscles - bone pain remains).

My migraines have been more frequent lately. I'm not sure what is up with that. Just when I decided it was related to hormones, they changed up on me. Thankfully, my doctor gave me a new migraine med that works. I just wish I didn't need yet another medication.

I wish I could live pain free. Will I ever feel better in this life? I'd be such a different, more energetic person and capable of accomplishing so much more! I know God knows what He's doing, but while that fact may be comforting most of the time, I still have to work through moments like these. What would it be like to not have to micro-manage my entire existence? I can't pick up toys because it makes me dizzy. I can't sweep and mop floors without feeling the added pain for days afterward. Laundry has to be done in stages which leaves a constant flow in the living room and down the hall to my washer. Cleaning bathrooms? It's the same result as mopping. That's only part of household duties. There's also dealing with teenage boys and a four-year-old - emotional and mental exhaustion. Then, there's the need to take care of my hubby. Being a wife and mother is already the most demanding job on the planet. Add chronic illness to the mix and it's overwhelming at the very best.

Concerning pain, I'll give you a glimpse by describing the pain in my hands. I feel my bones. I feel my joints. I feel my ligaments. I feel each layer of skin. I feel individual parts of my hands. That's not normal. The types of feeling varies. There are aches. There is sharp pain. There is soreness. There is burning pain. There is a numb-like pain. There is stiffness. There are twitches that come and go. My skin feels like it's pulled tight over the bones. My hands feel swollen and bony at the same time - thick, yet hollow and airy. There are too many sensations to name every one and that's just my hands. I started at the top of my head one day, determined to list every kind of pain, feeling, sensation all the way down to my toes. I had quite a list by the time I reached my shoulders an hour later and gave up. I wanted to cry. So, I abandoned that ideal, deciding it wasn't a healthy thing for me to do. Thinking about it only makes me feel the intensity I usually spend all my energy working hard to ignore.

I know that Jesus knows and understands my pain in a way many do not. I know there are many others out there suffering as I am. My heart hurts for them. It's more than physical pain that comes with chronic illness. Mental exhaustion, emotional exhaustion, guilt for not being able to perform as a whole person, the death of dreams, the death of even simple plans that others take for granted. I can't always go to the grocery store when I need to. There are times when I put it off for days because I just don't have what it takes to undertake the chore - especially if I try to plan meals and make a list in an effort to spend less money. I have to reserve my energy and strength for necessities which leaves very little time and energy for "fun" things. Even vacations are more work than simply staying at home. It usually takes me a good week to recuperate from going out of town. And when I am on vacation I have to be careful not to over-do...which means saying "I can't" more times than my family wants to hear. I've learned to limit myself in order to be able to function for a handful of necessary day to day activities. Even thinking about things or trying to decide what to do and what not to do can be exhausting.

While I'm thankful I have my writing, there are times when I get writer's block because of all the things left undone until I'm physically able to get to them.

I guess the bottom line for me today, though, is my emotional weakness. I hate feeling weepy. I hate snapping at those I love. I hate being angry with myself for my limitations and angry at others for not seeing them and offering to help and angry because even if they did offer to help there are too many things I need to do myself. They're my jobs and I need to do them. It's frustrating and I hate feeling this way.

Then, there's the mysterious anxiety issues that come to plague me at times. I hate walking around with a knot in my stomach for no apparent reason. I hate the feelings of dread that seem to have no foundation. It makes me edgy and I hate that, too.

All in all, it's been a physically, emotionally, mentally, exhausting day. Honestly, if it weren't for needing to take care of my boys, I'd crawl in bed and sleep the days away.

I know venting doesn't change my situation, but sometimes I just need to get it out of my system. Thanks for caring enough to listen.

2010-06-04T12:06:00.001-05:00

We must learn to regard people less in light of what they do or omit to do, and more in the light of what they suffer.
Dietrich Bonhoeffer

Spring In The Air Puts a Spring In My Step

2010-04-03T13:50:00.001-05:00

The long, hard winter finally left. Spring arrived a little late, but I'm just thankful it's finally here. Sunshine and warmer temperatures are definately better for us Lymies than the cold winter.

I'm happy to report improvement in my health from the last update:

Panctreatitis:
The enzymes I'm taking seem to be helping. Many symptoms have subsided. The chronic cough, heartburn, feeling of stones in my stomach and esophagus, etc. are much better. I'm still swollen, bloated, and sore inside, but I don't imagine that will go away anytime soon.

Addison's Disease:
Stabilized, I've finally been able to return to my regular dosage of hydrocortisone. Though, on more active days, I've discovered I need to take extra doses.

Pain:
The LDN has definately improved my pain level. It not only inabled me to go off my anti-inflammatory, it decreased my pain to a more manageable level, as well.

Sleep:
Sleeping seems to be hit and miss. Some nights I sleep very well. Other nights, I lay there wide awake for hours before I'm able to drift off to la-la land.

Sinuses:
I'm apparently still having some sinus trouble. I've been "snoring" off and on. I've never snored up until the last six months. The weird thing is, it's not a normal snore. It's a very strange noise. I know this because John recorded me one night. :D It's not strictly nasal. It's seems to be a combination of nasal and vocal, and very loud.

Atypical Migraines:
I still have rounds of migraines, but I think I'm picking up on a pattern with them. Nattokinase seems to help some, but other than that there's not really anything I can do about them for now, except medicate and endure them. Thankfully, I can usually keep them under control well enough to function somewhat.

Fatigue:
Fatigue still comes and goes at will. I just take it as it comes and get the rest I need when I need it - at least as much as life allows me to.

Neurological Symptoms:
I still have nerve issues. There are so many different kinds. There's the fire in my skin and soft tissue. Yet, I still feel somewhat numb. When I get cut or burned, it doesn't hurt as much as I know it should. Many times, I don't even know I've hurt myself until seconds, minutes, or even hours later. Sometimes, I don't have a clue as to how I received an injury.

Muscle spasms still come and go. I also have what I call involuntary jerking. There's no control over these and I never know they're coming. They just happen. A leg will jerk, an arm, a part of my back, a foot, a shoulder, etc. These are coming more and more frequently. Unlike restless leg syndrome, it happens anytime, day or night.

Spring Fever:
I admit, I do have Spring fever. I just want to get outside and work in my yard and watch my spring flowers grow - which I've done a few days this week and am now paying for it. I am so sore! I try to not over-do, but I get going on a project and I feel like I just have to finish it. Well, it finished me for now. Time to just enjoy watching the flowers grow and ignore the weeds growing up beside them. They'll still be there when the soreness is gone.

I'm sure there's more I can update you on, but that's enough for now. I'm growing tired and my hand, wrist, and arm are still hurting from pulling weeds yesterday.

Thank you for your continued prayers and support. The Lord hears you and I pray He blesses you only as He can.

Love and blessings,

~Linnette

Still Struggling

2010-03-10T16:46:00.003-06:00

Progress has been a slow go this past week. I truly thought I'd be better than this by now. My doctor said to continue the upper doses of hydrocortisone for a few more days and then back off slowly. I can't tell you how fatigued I am. It's not a normal fatigue or exhaustion. It's more like some kind of mega-vaccuum is sucking the life out of me.

I spoke with my Lyme friend today. Sierra Integrative Medical Center gave her life back to her. Not only did it put her back on her feet, but she is on a steady incline of good health. She does have to go back once in a while for a "clean up" treatment, where they just clean out the bad stuff building up in her body in order to keep her immune system strong. This is not a mandatory thing, but she said most people opt to do it because it strengthens them each time. She had Chronic Ebstein Barr and went back for a treatment for that. (She also gives herself ozonation shots when she gets ill.) They call those treatments "tweaks." The initial treatment is 4-6 weeks of living out there and going through intense homeopathic therapy.

At this point, we don't know that it's something we can do, but I'm going to continue looking into it. There's as much bad said about the clinic as good. I don't know why. I don't know if some people are responsive to this type of treatment and others are not, I just don't know. I know my doctor has confidence in it and that speaks very highly of the clinic and their treatment in my opinion. He would never endorse something if he weren't convinced.

I also know that Randy Travis was treated for Lyme Disease at Sierra. After going all over the USA to find a cure for losing his voice (his voice specialists couldn't find anything wrong with his throat or vocal cords) and other things caused by his illness. Now, he's back to doing everything he loves doing. He goes back every year for preventive care which he says protects his health.

Moving on...

Thankfully, my LDN - low dose Naltrexone, is helping the pain and inflamation. The pain med I had before took the edge off the pain, but then the pain only increased after I had been on it for a while. The LDN has enabled me to go off that med and still feel some relief. Granted, it only makes the pain more tolerable...most of the time, but at least it's working and with no side effects.

It's amazing how you can become accustomed to a way of living. It's all you know and you don't realize how bad things get at times. The past two months have been a time of renewing awareness for us.

Thank you for your prayers and support. It always does my heart good to receive messages of concern, love, and prayer support.

Blessings,
~Linnette

Hydro-cortisone...My Life Saver

2010-03-04T20:32:00.003-06:00

I went to the doctor with my list and went over the entire past eight weeks. I told him everything I could possibly think of. I sat there overwhelmed for a moment trying to figure out where to start. But, I finally just plunged in and told him every little thing I wrote down or could remember. I also got his email so I can email him when I need to instead of trying to talk through the nurses. Talking through nurses is so frustrating. There's just too much stuff and it's all so complicated to try to relay everything third person. So...

Basically, my body is in "crisis" mode. It's overloaded with illness and pain and gut stuff (pancreatitis) all at once. And it's causing my neurological system to go bonkers. So the brain is trying to figure out how to deal with it all and fix everything. In doing so, it's trying to shoot out cortisol (adrenaline) in order to give me the boost I need to heal or make things work right, but there's no cortisol to shoot because my adrenal glands aren't functioning right. No cortisol and the body goes into shock and starts shutting down. Addison's disease.

So, he wants me to up my hydro-cortisone for 7 days and then go back to my normal amount. If I relapse after decreasing, he wants me to double it again for another seven days and then back it down gradually. The hydro is not healing me but, basically, that's what is keeping me alive right now. This is not because I became dependent from taking the hydro-cortison. The hydro-cortisone is what saved my life after the heat stroke I had almost three years ago and it probably saved me again last night. I literally felt like I could go to sleep and never wake up.

Doc still thinks I have sub-acute pancreatitis (thanks to the bartonella co-infection), but we just "didn't happen to catch it in the blood work." Those were his words. I said, "The story of my life." He smiled sympathetically and said, "Yeah."

He also thinks my blood is clotty, causing the migraines...thanks again to the bartonella! So, I'm going back on the Nattokinase (supplement). I was supposed to have stayed on it throughout my treatment, but I quit taking it because of money...trying to cut cost. Anyway, if that works, we'll stick with it. If it doesn't work, he knows of a medication that worked for another patient to keep the red blood cells elastic instead of sticky and he said we can try it.

The bartonella lives in the red blood cells and makes them sticky. They stick to each other, forming tiny clots that make the blood thicker than it should be. Makes it hard for the blood to flow properly. A lot of Lyme patients have strokes because of this. Anyway, this other patient described all the same head issues I described to him and he showed a marked improvement on this medicine. We'll see if the Nattokinase works, first. If it doesn't, we'll try the other med.

He gave me permission to use whatever enzymes work for me, so when I'm finished with the Zenpep($$$), I'll try another one I used while waiting for my Zenpep to come in. They seemed to help when this pancreas stuff first arose and it might be cheaper than the prescription...have to check into that. Of course, I was on the vegan diet then, too. If it doesn't work, I'll simply return to the Zenpep.

He's taking me off the Armour Thyroid for now (it's backordered indefinately) to see how I do. He said there really isn't any good replacement for it. I think it's the most natural thyroid med out there. The others are synthetic, I think. At any rate, he didn't think it worth trying the others at this point.

He's hoping that increasing the hydro-cortisone will give my body the support it needs to get me over this hump. I did feel a small measure of strength return after taking a double dose this morning and I've taken it twice since. Yesterday, I was too weak to get up and take my meds, so I went without it until bedtime...the very medicine I needed to help me.

He said this illness (chronic Lyme disease) is a beast that's hard to conquer and we have to keep plugging along with baby steps for now until we get to where we need to go. He said if we had $15,000-$20,000 for it in the budget, he would send me where I could get well much more quickly...completely clean my system out. I have a friend who did that and she's cured.

I asked him about diet. He told me the same thing he usually says...low carb and make sure I get protein.

That's about it. I know I often say that prayers are so appreciated, but I also want you to know that I feel your prayers. I do. And I thank you.

Blessings, Linnette

Classroom Modifications for Students with Tourette’s Syndrome, Obsessive/Compulsive Disorder (Bipolar), and Attention Deficit Disorder

2010-02-09T16:31:00.000-06:00

Classroom Modifications for Students with Tourette’s Syndrome, Obsessive/Compulsive Disorder (Bipolar), and Attention Deficit Disorder

Bartonella: A Microscopic Monster

2009-10-30T16:49:00.002-05:00

For the past several weeks, a migraine has plagued me. After sending my doctor two emails describing the course of my migraine, I caved in and went for an appointment. After asking me several specific questions, he told me what was on his mind. Though he is encouraged by my increase in energy, I still have too many issues that are not improving. After much research, he believes the real issue for me is a Bartonella (a very mean bacterial) infection. Usually, the body can fight off such an infection, but the Lyme bacteria has lowered my immune system, causing the Bartonella to become chronic.

Many of the symptoms I currently have which spell Bartonella infection are:
1) strange, particular muscle spasms (including but not limited to abdominal contractions similar to labor)
2) atypical migraines (tension headache married to a migraine headache)
3) constant, acute sole (feet) soreness
4) neurological pricking, tingling fire in, on, and under my skin - covering entire body
5) unexplained abdominal pains
6) spastic adrenal issues which effect energy levels and include severe hot/cold spells (always either hot when others are comfortable or cold when others are comfortable...it's a very unnatural hot or cold feeling)
7) unexplained sudden onset of depression that leaves just as fast
8) cognitive issues/brain fog
9) unexplained swollen glands and enlarged lymph nodes accompanied by a chronic sore throat
10) gastrointestinal issues
11) low appetite/weight loss or inability to gain weight (My hydrocordisone obviously took care of this issue.)
12) chronic fatigue
13) tender nodules along extremeties, just under the skin
14) unexplained fevers
15) overall discomfort/soreness
16) brain inflamation/sensation of fever inside my head
17) night sweats

There is also a strange rash that often accompanies Bartonella infection, but I haven't been afflicted with that as of yet. Many patients have an enlarged spleen. I know my doctor keeps a watch on mine, but I don't know if it has ever been enlarged or not.

Trench fever is also caused by this bacteria, as well as, Lymphadenitis. As far as I know, I don't have either of these, though I have some of the sypmtoms such as sore shins, headaches, chronic oral pain, and swollen/sore lymph nodes.

My doctor is still researching. Though he is now familiar with the symptoms and is certain we need to treat this infection head on, he wants to know how to treat it with an appropriate antibiotic protocal. Until then, we will continue with the Lyme treatment. Please pray he finds answers soon as we believe that Bartonella is the real issue hindering my recovery.

Thanks for your interest, concern, prayers, and support.

Feeling It

2009-10-23T12:59:00.000-05:00

Maybe I try to sugarcoat things too often. I don't know. I think that's why I don't blog about my lyme more often. But today I need to speak. Today, I need to write so I can look back on my good days and appreciate them more.

This has been a rough week for me personally. I warded of a migraine for over two weeks only to have it hit me full force on Sunday. Mine are atypical migraines - the kind where the migraine meets up and holds hands with the tension headache....a very difficult cycle to break. All day Sunday and Monday, I medicated the pain while the sensation swept through my body, depleting me of my strength. Tuesday was a little better. Wednesday I felt like I was over it until exhaustion hit in the evening. A storm front came through and the migraine has been fighting to return with it. I'm so worn out and fighting depression. I know it will pass and that helps me to hang on, but it's still frustrating. Sometimes I simply get weary of it all and today is one of those days.

Linnette's Lyme Check

2009-09-30T16:09:00.000-05:00

Hello!

I have a good report this time. Even though I'm still in a lot of pain all the time, I have been doing more without the usual set-backs. My doctor thinks I'm doing remarkably well considering everything I've been through with the temporary move to South Carolina, living bumper to bumper in a two bedroom apartment, and moving back again. Everything seemed to check out during my exam. I don't know what exactly he looks for, but he said everything looks well and he thinks I'm improved. This gives me some hope as I've been discouraged by all the pain. I don't know if the Fibromyalgia will go away with the Lyme or if that's something I'll have to live with the rest of my life. I didn't think to ask him, either...just too many things to discuss.

Thank you for your continued prayer and loving support. I can tell people pray for us. God's grace is so evident in our lives. :-)

Yours truly,

Linnette

The Boys Lyme Check, September 21, 2009

2009-09-21T21:57:00.000-05:00

What an adventure we had today! Matthew hurt his wrist last week, Andrew hurt his finger yesterday, and Garrison ran a high fever all night last night. By the time we reached the doctor today, we were more than ready to see him.

Garrison has a re-occurring fever that comes with headaches and vomiting. We have yet to figure out what triggers it, but it's been going on for almost a year. Dr. wants me to start journaling what he eats, drinks, medications, etc. to see if we can figure out a pattern and better pinpoint what's going on with him. Otherwise, everything else seems to check out ok. Anyway, he was sick last night, but had not vomited. I hoped I had gotten to him with the Silverbiotics in time, but on the way home we stopped for lunch and his fever spiked again. I no sooner got him in the van and he threw up. We ran over to Target to get him some fresh, warm clothes. I put his shirt on, was working on his pants when he threw up again. Argh! We managed to get things under control and head home at last. He's still spiking and I'm having to alternate Tylenol and Advil. Hopefully, we'll get a little sleep tonight.

Matthew is doing well considering he was off his meds all summer. We are starting him back up, however since his fatigue started returning. We also got him a new allergy med in hopes it will give him some relief. We x-rayed his wrist, though. Dr. thought it possible that it was fractured at the growth plate. He couldn't see a fracture, but said the radiologist will look it over and let us know if he sees anything different.

Andrew is doing ok except for his neurological tics which have returned, as well as his allergies. We're continuing his allergy meds as are and returning him to the antibiotics for the Lyme. He also needed an x-ray. Dr. thought his finger might be broken. Thankfully, it turned out to be a bad sprain, but it made for a very interesting day at the doctor's office.

Christopher checked out for the most part. He's had some issues with fatigue and such, so we're checking some of his blood levels, but that's about it for now.

My Lyme check-up isn't until next week so nothing to report there, yet. Sorry if this seems a bit choppy or abrupt. As you can imagine, I'm a bit wore out and ready to go to bed. Thanks for caring enough to keep up. And thank you for the prayers and support you give.

In His grace,

Linnette

August Lyme Update

2009-08-17T13:22:00.003-05:00

To be honest, all I want to do right now is sleep. I’ve had a week of restlessness, vague headaches, and emotional battles. I’m over-due for my Lyme check, but trying to hold out until I can get there in a few weeks. My over-all pain level has been on a gradual incline and is unbearable at times. I find myself wanting to collapse in a puddle of tears. I am blessed with a fairly high pain tolerance, so the fact that it is reaching this point is a bit overwhelming for me. When you wish to rip your insides out, cut off limbs, or decapitate yourself in order to be rid of the pain, you know it’s bad. I don’t think there is a molecule of my flesh, inside or out, that doesn’t hurt or have some sort of unhealthy sensation.

I recently took Christopher to a doctor here in South Carolina who asked about his Lyme symptoms. I laughed. “How much time are you willing to spend, doc?” I wanted to ask. We told her few of the major ones and she ignorantly said, “So nothing major.” I’ve learned not to get too worked up about it, but I wanted to say, “No. Nothing major. Not unless you have to live with it day in and day out every single day of your life without relief. How major would you consider it, then, if it were you or your child suffering?” But, I held my tongue knowing it would do no good. She’s a pediatrician/internal medicine doctor. She really needs to learn about Lyme. Maybe she’ll get curious enough to initiate her own research on the subject. Maybe she won’t wait until it is herself or her own child suffering from this debilitating disease.

Christopher is recovering from bronchitis. He’s been suffering from depression (a physiological depression which is very normal for chronically ill people) and hasn’t been as active as he needs to be. As soon as he’s well, I plan to make him more active whether he wants to be or not. But, I think he’s learned his lesson. He’s seen what being physically idle has done to him and he wants to be as healthy and strong as he is able. He is a very special young man and the Lord is teaching him a lot through this illness. I hope he continues to grow in all the ways that count.

Andrew is struggling with his neurological tics again. It tears at my heart to watch him suffer. He knows he twitches, but he can’t stop it from happening. How he manages to look past it and still feel comfortable making new friends is beyond me. I think he is much stronger in character than what I have given him credit for. I know that his music helps him cope and I plan to continue to encourage him in developing his skill.

Matthew has blossomed. He is beginning to struggle with the physical symptoms again, but his psyche has improved much over the summer. I think the break from treatment has been good for him in this way, but it’s time to get him back on it as there are physical pains and such that are starting to rear their ugly heads.

Garrison has been about the same. As long as I keep him on the Silverbiotics, he does well. He’ll have spells of extra fatigue and he’ll run a mild temperature now and then. But, as long as he’s on the Silverbiotics, he doesn’t become ill with the vomiting, diarrhea, high fevers, and near dehydration that sent him to the ER last spring. He still has the headaches from time to time, but they are not chronic like they are when he’s been off the Silverbiotics.

We have had a wonderful summer for the most part. We thoroughly enjoyed time spent at the beach. I’m ready to visit home, get our doctor appointments in, get Christopher’s braces off, stretch in our house for a while, see the flowers in my yard, get school started, return to John, and get the boys involved with a home school group – drama, guitar lessons, choir, etc. Hopefully, my writing won’t suffer from the busyness.

Thanks for caring enough to stop in and check on us. I will try to be better about updating more often. May the Lord bless and keep you in His tender care!

Sincerely,

Linnette

The Old and the New

2008-12-31T19:27:00.004-06:00

I must say that 2008 has been challenging. Filled with trials and triumphs, it has made me weaker. You read right. Weaker. But that's a good thing. God's word says, "When I am weak, then am I strong." and "...His strength is made perfect in weakness." Yes, I've become weaker through the trials, and yet my trust in Christ is stronger. I realize more with each passing day that I am nothing and Christ is everything. I'm learning that life is meaningless...unless you know Christ and realize that HE is what matters in life, as well as in death.

I enjoyed a few days of incredible joy a couple weeks ago. God showed me during those days what it means to have the joy of the Lord as my strength. I felt invincible and I thought at the time that God must be preparing me for the days ahead. I didn't miss my mark. These last two weeks have been some of the most trying of the year and, quite honestly, I've had to battle with depression.

Three times, I've had ripped open infected emotional wound that all chronically ill people contend with - loved ones who just don't understand how sick you are simply because you look healthy. They have no idea how debilitating this disease is. I'm accused of not wanting to go to church, not wanting to help my extended family when they need me, not taking care of my house, my husband, and my kids like I should...the list goes on. I know that I'm not alone in this. I know that all chronically ill people suffer with this to an extent. And, sometimes, I almost wish I had cancer instead. People would take my illness seriously, then.

It's not that I want pity. I just want to be understood and believed. When I say I can't because I'm sick, I don't need for people to make me feel guilty over something I have no control. I do a good enough job of that myself. Yet, because I look healthy, I'm made to feel like a liar - always having to justify my actions or decisions to one person or another. That hurts...especially when it comes from the people I love the most.

What most people don't get is that this illness is deadly. It will either kill you slowly in a torturous manner, or it will kill you quickly. John's college professor dropped dead from a fast growing Lyme induced brain tumor. Another lady died in her sleep at the age of 41 - her heart stopped in her sleep. Two Missouri girls who went to camp together both returned with Lyme infected tick bites. One of them suffers with Lyme today while the other died within a year.

This is a serious illness and it needs to be taken seriously by those who love us. I don't know how many times I've come close to death, but I can tell you there have been many times I felt like I was on its doorstep...times when others expected to receive a phone call any day.

But, apparently, God has a purpose in keeping me alive. And, if for no other reason, I want to live for my boys. Who will understand what they go through or take their illness seriously better than me? Nobody. So, until God calls me home, I will live to get them the help they need to hopefully heal them from this terrible disease that is slowly destroying their bodies. They are gifted boys and I want them to be able to use their abilities to glorify the Lord. And if that's my only purpose in life, then that gives me reason to live.

But, I was speaking of the last two weeks. In two weeks time, I've battled with accusations of not doing my duty by the Lord or my loved ones; my boys and I have been betrayed and rejected by a special family member; my husband has been ridiculed for standing by me and the boys and not leaving us; I've been taking care of sickies over Christmas and beyond - kids with stomach flu, respiratory influenza, and pneumonia; we've gone through a power outage with the boys all running fevers; I lost my laptop with all my writing and pictures on it to a malicious virus on the internet (thank God I backed it all up - mostly); I'm sick with influenza myself; my husband is officially unemployed tomorrow; my plans for a fun Christmas break with the boys has been blown to smithereens; and, once again, we can't celebrate the new year with our church family because of illness. Happy New Year, right?

Then, I'm reminded that Jesus was despised and rejected by men. His own people, family and friends, were the first to mock, reject, even betray Him. He was a man of sorrows and acquainted with grief. If anyone ever knew about physical, mental, emotional pain and anguish, it was Jesus. He knows. Jesus knows!

When the pain becomes too much to bear, Jesus understands. He holds me. He cries with me. He prays for me. He loves me through it every time. He is my friend who sticks closer than a brother. And that's what gets me through it all.

He gives me the strength to endure; the hope to see beyond what I can see; the faith to believe that with God all things are possible and that all things WILL be made beautiful in its time. He is my rock and my fortress, my very present help in every kind of trouble. He is my comforter and sustainer. He is my promise keeper.

There is no one who knows me and understands what I go through more than Jesus. There is no one who pleads to the Father on my behalf more than He. How can I not find joy and strength in that?

I admit that I'm glad 2008 is nearly behind me. And honestly, I don't look forward to 2009. But, I find comfort and strength in knowing that no matter where I go, Jesus Christ goes with me - carrying me, holding me, providing for all my needs. And when I can't see the way, I pray He will always give me faith to believe in what I cannot see.

So, as I enter the year 2009, I don't make any resolutions. I pray.

I pray that God will have mercy on me and my family; that He will give us the faith and the wisdom we need to live each day; that He will continue to provide for our needs; that, somehow, we will be able to shine as His light to the world around us no matter what trials He gives us to endure.

I also pray that you will be blessed in this new year with a solid, unwavering faith in the Lord Jesus Christ; that you will learn more of His loving-kindness through the trials you face in the coming year; that you will be a shining light in the midst of the dark world you live in.

And, I pray that together, we will shatter the grip of disbelief that holds captive the world around us.

God bless you and give you a truly happy new year!

~Linnette R Mullin

2008-11-21T09:44:00.002-06:00

Garrison had been struggling with fatigue and headaches almost daily. I took him in to rule out anything like brain tumors. After his examination, the doctor decided that everything "looks" fine and, therefore, concluded that the Lyme is rearing its ugly head. We decided to put this thought to the test and give Garrison Silverbiotics daily to see if he improves. It's natural, safe, and it works well. I had been very consistent in giving it to him up until my writer's conference last week. He definitely improved. He hadn't had a headache for days. After a few days of no Silverbiotics, he's been struggling again this week. So, back to the Silver. I think we have our answer.

Matthew did not show any improvement with the B12 shot. It made absolutely no difference in him at all. I'm beginning to realize that his symptoms are so much more severe than any of us realize. He's finally learning to recognize the pains he has that are not normal. Almost everyday he's pointing out some pain or weird sensation he's experiencing. I think perhaps his "temper" has as much to do with overload from the Lyme as it does with just having a bad temper. I know how cranky I get when I'm having a bad Lyme day. Also, I always notice a drastic improvement in him mood-wise when I give him his fish oil. One more thing to become more consistent with.

Andrew struggles silently. His has more cognitive/neurological issues, though he does experience severe soreness when he does anything physical out of the ordinary. He could hardly climb stairs after playing a basketball game. He's my silent sufferer who pushes himself and hardly ever complains.

Christopher, I believe, has improved. I think he finally made it over a significant hurtle. The last time he became ill, though he never ran a fever, he never went into the usual strep throat, either. It was a recognizable herx and he only missed two days of school rather than one to two weeks. His energy level had been up until he started missing doses of his meds. He has been extremely fatigued of late...the kind of on-going fatigue that isn't cured by sleep. It's wearing him down emotionally. He's my everything-rolls-off-his-back kind of kid and he actually complained that he's fed up with always being tired no matter how much he sleeps.

The doctor's prediction that I would herx a lot on this new medication was extremely accurate. I have herxed like never before. The first time, I had a fever that reached 104. This last time it reached 102. I've learned that I may be normal in the morning, but by evening I'm going to have a fever...whether low-grade or high, I'll have one. It's a very painful fever even at only 100. The pain is a crushing bond-deep to the marrow kind of pain. My muscles become so tight they feel like balls attached to my bones. My organs ache and beg for relief. The fatigue is so great at times I could fall asleep standing up. The headaches quickly turn into A-typical migraines if I don't take Ibuprofen. My bowels...lets just say mornings are worse, but it gets better throughout the day - the opposite from the fever. Weird! The cough doesn't get bad, but it comes and goes. I don't doubt that I probably still have fluid in my lower lobes...especially the right side. I'm wondering if that's what is causing so much discomfort up under my rib-cage. My vertebrae are sore...everyone of them from the base of my skull all the way to my tailbone. I really should go see my chiropractor, but a busy three-year-old makes that rather difficult...so does my limited energy. I probably need to go once a week for a month or two.

My greatest consolation in this increased level of pain due to the herxheimer's reactions is that it's killing of the "beasties." At moments when I think I can't take it anymore, I remind myself that they are dying and it gives me the boost I need to endure.

However, God is my rock and my refuge. My ever-present help. I couldn't go on without Him.

October 21, 2008

2008-10-21T08:55:00.002-05:00

The good news is that Christopher and Andrew seem to be right on track in their treatment...meaning that they're bodies are responding and they are healing, though they still have a little way to go.

We gave Matthew a B12 shot, which he did not appreciate, in an effort to see if his energy level is a lack of B or if he's still struggling with co-infections. I did not see an immediate improvement...we'll see if there's a long term improvement.

Garrison still struggles with sleep issues. I have found that when I give him his Silverbiotics and his vitamins more regularly, he does better. He was sick over the weekend. Not sure what it was. He had a fever, headache, sore throat, and vomited every time his temperature got close to 101. As long as I gave him Silverbiotics every few hours, his fever would go down, he would stop vomiting, and he stopped complaining about hurting. He had a headache off and on for about a week, but the high fever came on during the night Friday night. By Sunday morning, his fever broke and he's been fine since. Whatever it was, the Silverbiotics killed it. If I didn't believe in the stuff before, I do now. I've never seen such dramatic, immediate response to it before. Maybe there's hope for his immune system after all.

As for me, the doctor is thankful for our new insurance. He's been wanting to treat the Bartonella co-infection for some time, but my mini-medical didn't cover the necessary meds for it. The treatment will last about four months and I am expected to experience severe herxheimer's reactions...basically, I'm going to experience the "flu" off and on for the next few months: fatigue, aches and pains, fevers, diarrhea, etc. Let me just say that the aches and pains that come with a herx is at least twice as bad as any flu you've ever had. Not fun! But, if it kills the little "beasties," I'll be so happy to get rid of them.

At this point, the neurological feelings are spread all over my body and very irritating. The best I can describe it is when you've been out in the cold for too long and you come into a toasty warm room and you feel tingling and pin-pricks accompanied by the painfully numb, hot/cold feeling in your skin as your body begins to warm. This is what I experience every moment of everyday and all over my body. It's also accompanied in patches sometimes by deep itching that can't be satisfied by scratching. I'm hoping this treatment will take care of it and that this is not permanent damage caused by the disease.

Please pray for me as I've already started herxing. Thankfully, I don't have to work as much and I can quit if I have to. Right now, I'm experiencing stomach pain, intestinal discomfort, low-grade fever off and on, fluctuating headaches, soreness, pain, aches and fatigue. According to the docs time-line, it's a little early for a herx, so maybe I'm just fighting whatever Garrison had.

In my P.S. I'm going to talk a little about Bartonella for those who are interested.

Also, here is an interesting news link talking about Lyme disease and the film that came out called "Under Our Skin." http://www.foxnews.com/video/index.html?playerId=videolandingpage&streamingFormat=FLASH&referralObject=3150614&referralPlaylistId=searchlyme

Thanks, again, for all your love, support, and prayers!

Love,

Linnette

P.S. Let me try to explain a little about Bartonella.

First, it is a gram-negative pathogen - simply, a disease causing germ:
A pathogen (from Greek πάθος pathos "suffering, passion", and γἰγνομαι (γεν-) gignomai (gen-) "I give birth to"), infectious agent, or more commonly germ, is a biological agent that causes disease or illness to its host.[1]
The term pathogen is derived from the Greek "that which produces suffering." (Wikipedia)

Normally, your body's immune system can fight off pathogens. However, Bartonella is an opportunistic bacteria, meaning that when the immune system is compromised in any way, they proliferate and cause harm to the host (the one infected). See http://www.stopticks.org/ticks/bartonella.asp for a summary of symptoms.

Bartonella is transmitted by insect vectors such as ticks, fleas, sand flies and mosquitoes.

Bartonella is a proteobacteria meaning it can move throughout the body under its own power by either "swimming" or "gliding". Escherichia, Salmonella, Vibrio, Helicobacter are other examples of proteobacteria.

Bartonella commonly causes "Cat Scratch Disease" (among other illnesses) - a serious illness which can is overcome typically within weeks or months unless you have a compromised immune system (such as someone who has Lyme Disease), in which case more severe complications tend to occur.

Here is a site with a quick read of information on Bartonella: http://www.stopticks.org/ticks/bartonella.asp
You'll also find info and links for other tick borne diseases.

Hope this has been helpful. Honestly, I don't know which of my wymptoms are caused by the Lyme bacteria and which are caused by the Bartonella. Together, they make for an unpleasant illness and most of the time, that's all I need to know.

News Since the Check-Up

2008-09-24T09:05:00.002-05:00

Christopher is doing better for the most part. His cough is coming back. He swears his tonsils need to be taken out. I told him he just needs to keep gargling with peroxide water like the doctor said. He feels so much better when he does. I also need to do better at making sure they get their vitamins every day.

Andrew's thyroid test came back normal. I don't know why it was enlarged unless the Lyme was attacking it that particular day. His allergies are some better and his leg (Osgood Schalters) seems to be doing much better now that we have the brace for him to use during sports and activities.

Matthew's allergies are getting under control, as well. The medicine did a great job.

Garrison does better on days I remember to give him the Silverbiotics and vitamin C.

I need to be more consistent with the natural stuff for all of us. It's hard when our schedule's are so spastic with school, sports, and work.

I am still having great difficulty. The doctor said I have Pleural Effusion without the infection. There's fluid in the lower lobes of my lungs. Normally, they would give steroids for this, but Lyme patients can't have steroids. So, I'm upping my hydro cortisone, drinking fluids, and resting as much as possible. I am still fatigued, my chest hurts and spasms, eating very much at a time puts pressure on my lungs which hurts, I'm nauseous and have heart burn, and my entire chest cavity burns...its not much fun. Thankfully, the drainage from my sinuses has decreased which is probably why I'm not coughing quite as much. I'm not sure how long it will take to get over this. The doctor indicated it might take 2 or 3 weeks. If I suddenly go downhill, start running a high fever, I have to go in and get my lungs drained as that would indicate infection and is very dangerous. However, he doesn't think that will happen...probably because of the antibiotics I'm on.

Please pray for us as God brings us to mind - especially me right now. It's very hard taking care of a family and home, as well as working and writing when you're sick. I'm used to a certain level of illness...I live with it everyday. It's when the illness multiplies that it becomes very difficult.

Thanks for your prayers and loving support! I know God hears them as He continues to give me the grace I need for each day.

Blessings,
~Linnette

September Lyme Check-up

2008-09-10T12:55:00.000-05:00

We had our Lyme check-up yesterday. Here's how it went.

Christopher: Doing well, but got some excercised for his knees. They're already helping.

Andrew: His thyroid was enlarged, so the doc ordered bloodwork.

Matthew: Suffering from major allergies! He gave him some meds in hopes it will help his little body deal with it better. Matthew never naps, but he's been doing nothing but laying around and sometimes napping when he gets home from school.

Garrison: He's been complaining with sudden pains with no obvious cause. His appetite, sleeping, bowel, energy patterns are still very irregular. Doc says its not good. All sure signs of Lyme. He wants me to start giving him Silverbiotics and probiotics everyday for now.

Me: I'm still so sick. The antibiotic I started taking for the strep caused my sinuses to start a water-fall into my respiratory system, creating major havoc. He listened to every inch of my lungs and said everything is reactive to this recent illness. He wants me to rest as much as possible. I think he'd keep me home from work if he had a way to do it. Told me to rest during the day as much as possible. My chest hurts. He gave me tussionex for night (cough), and an inhaler for the daytime. I also got in trouble for stopping my Armour thyroid and hydrocortisone. I can't help but wonder if the Armour is causing my headaches. I think they are, but I'm going back on it for now.

I have to admit that I'm pretty discouraged and a bit depressed. It seems like such a never-ending thing. My house is a mess and driving me nuts, I'm behind on my writing, I wish I had more energy to do more family stuff, and I'm just so tired. I know the depression will lift when I get over this hump, but I just really feel alone and have no help at the present. I'm wishing my mom lived next door.

Ok...enough babbling on and complaining. I know God will get me through once again...I just needed to get this out so it will quit rolling around in my head. TTFN!