Utter frustration are my words for today. My last visit with Dr. Forester in Louisana was very frustrating to say the least. I felt, if it weren't for my research and knowing what questions to ask (even though I already knew the answer), we would have left in the same shape we came in. Its frustrating driving 4 1/2 hours to see a doctor, that you have to remind that you have Lyme, only to have to yank and pull to get any answers or progress. Not sure that made sense in words. One of my questions was how we knew the Doxycycline was being effective since what I read was its not unless there high levels of it in your blood consistently for 48-72 hours. I already knew the answer but was trying to direct Dr. Forester to take action, help me fight. He said that a blood test is needed, and so, we should do one. I don't remember a lot of things anymore unless they are triggered by something, but I specifically remember asking him if we could do that test there that day and he said yes. I had blood work done at his office and along with HHV-6 levels being tested again, the Doxycycline levels were supposed to be tested. He called days after this appointment to share with me that the blood work came back normal. Again, he voiced his shock that the HHV-6 levels were normal. I inquired about the Doxycycline levels and he said that test had not come in yet. I waited a couple weeks and called and left a message, specifically inquiring about the Doxycycline levles. Yesterday, I received a message directly from Dr. Forester with the results of all but the Doxycycline levels. Chris call, left another message stating we wanted only the Doxycyline level results. Today, I received a message stating that their lab doesn't do that test that maybe Labcorp in Texas could do it. Are you kidding me?
So here I am on 3 heavy duty antibiotics that no one is monitoring. I do not have a single doctor monitoring these chemicals. Here we are at least 3 months into knowing I have Lyme, an answer, but I don't have a doctor on my side that is managing it and fight it with me. Only a person who truly understands how complex, complicated and nasty Lyme is will understand my frustration today. I have this bacteria in my body that has been having a party and multiplying for 10+ years. It has made its home in every crevice of my body...tissues, joints, brain, heart, blood and it is so nasty and sly that it will hide behind fibroid tissue where it can't be touched. To make matters worse, it takes on different forms. No one medication can attack all forms of this vicious bacteria. To make matters worse, it will take over a year just to clear this bacteria out of my body....even then, there is no test to determine whether it is all gone. This is a disease that has taken my mind and my body. No, I am not the worst off but I sure don't want to get there. And yet, I can see even in this last week, a progression in symptoms. My frustration with this disease increases with the symptoms and the fact that I can't seem to find a competent doctor that will fight this with me and see through to the other side. I have been praying for God's direction on this. I didn't feel we were supposed to go back to Louisana to see Dr. Forester and today's phone message affirms that.
Chris wants me to stop the injections because they are beating me up. So I am faced with taking medications and throwing money down the drain and needlessly putting chemicals in my body because they working due to not being monitored. Or, I can stop taking them and then nothing is "fighting" the bacteria. Sounds like a no win situation right now. I just want to get well and have my life back where I can function as a mom and a wife and a friend. Please pray for God's direction and for God to send us a doctor that will fight this disease with us and for us.
Tuesday, March 23, 2010
3/9/2010
Okay, so I have a post of a time when I was really struggling. Most days are a struggle either physically or emotionally. I have really realized just how Lyme has affected my brain. For the last 3 years I have beat myself up for not handling "life" better. Now I know. I, and all the doctors, had focused on the physical stuff that I didn't realize how my mental capabilities were disappearing little by little, piece by piece. I also realized I don't like it when people say, "You look great!" because this is intrepreted in their mind as, "she is better" when in reality I have dealt with this disease for so many years now that I have learned to do life with it. The only thing new is we know what it is. There was a time in early 2009 where I had given up finding out what was going on with my body. I felt like I was trapped in a the body of a 90 year old but no one could figure out what was wrong...so then you start questioning your sanity. Questions like, "do I really have that much trouble with my hands?" or "Do things really hurt as bad as I think they do?" If you really know me, and few do unfortunately, I am not one to lay on the couch or be in bed unless I have to and usually I push myself too far and end up there. But, the minute I have an ounce of energy I am back up and going. I like to be doing life. But, in doing life I get frustrated that I can't do it like I used to. But just because I am up and appear to be going doesn't mean I am doing it without struggle. Every day is a struggle in some way.
I wanted to blog because today has been a fairly good day. When I feel like I do right now then I feel like I can beat this thing. Unfortunately, most days I wonder how in the world I am going to make it through the next year fighting Lyme. But today, I had a great morning doing school with my girls and I am at Becka's gymnastics doing what I love which is watching my girls excel and enjoy what they do. I have my ear phones in listening to a song list of songs that I find uplifting either physically or emotionally but always spriritually. There is nothing much greater then watching my girls. This is being a mom and that's all I want to do is be able to be a mom and wife and not just merely be surviving hoping I can make it through the day without too much damage done to my kiddos emotionally. It doesn't take much to overwhelm me or frustrate me. I just don't have the mind capacity anymore. I have been wondering through the last 3 years why I get more and more easily frustrated and why I long to be just left alone. Though the diagnosis was in December/January some things are just now making sense that I have just accepted as "life" the last several years. It is mind blowing sometimes.
I think one of the most frustrating things about Lyme is that others don't understand the extent of this disease. Thus, one of the reasons for the blog. We had lunch with a couple from our church Sunday after church and they were asking questions about Lyme. If you ask I will definitely share all I know. The funny thing is we went home and it hit me that with all I shared it was only the tip of the ice berg. This disease is so complex and complicated. It affects every faucet of your body and your life. There is no way to share everything about it in one sitting. I am definitely passionate in sharing what I know hoping that awareness of this aweful disease is increased because for every person successfully diagnosed with Lyme there is at least one who goes undiagnosed. This disease is nasty, complicated, complex and will take me over a year to fight it but I know one thing, I at least know what it is that is attacking my body. After years and years of praying for an answer, we have one. So, though the light at the end of the tunnel appears out of reach most days, I can at least see a light where before I couldn't. God is good but he is Great in His time and in His way. I can't imagine being sick and fighting Lyme without God in my life. My relationship is not always the strongest but I know where my strength comes from. So, I will continue to pump my ears full of music encouraging me and reminding me who holds my life in His hands. Without Him, life is useless, meaningless and pointless.
One thing I am learning through this journey is the importance of people, particularly family. I felt God tell me to empty my plate of all my activities. The only things we have each week besides church activities are the girls one activity each. I'm doing good to get them to their one activity (Becka's gymnastics meets 3 times a week due to it being a pre-competitive team). But, through years of teaching piano lessons and watching other families and the wear and tear on them I vowed early on not to be rushing from one activity to the next but to balance time when we are home and the girls can "just play" and be girls. It was also placed on my heart early on that I can't just drop them off and not be involved. This is a challenge when you have two. This is why today is such a treasure because I get to watch Becka and Becka only (Thank you Kelly). She gets to see me catch her do that new skill. I see the treasures adding up when she looks over and sees that I am watching and am interested in what she is doing and didn't just drop her off or just hanging out entertaining her sister completely unaware of what she is doing. I love it when I can give each child my attention and truly watch them, investing in them individually. This is not easy, especially when most days I'm good to just make it through the day. But I understand now why God placed those ideas and values in my heart several years ago....He knew where I would be today and I can't help but wonder if part of this Lyme is His way of helping me value my girls more for who they are and not just rushing around and being able to check hundreds of things off on my list of things to do. With limited energy I am forced to choose each day and days when I would have chosen the laundry and dishes, I'm good to get through school with my girls but its at least time with my girls. Priorities have changed. It nots easy letting the laundry go unhung or dishes in the sink and it not easy to go the route we are going when the rest of the world is rushing by doing and going about with different priorities and values. But, we are doing what God has placed on our hearts and raising our family the way God has placed on our hearts. It hasn't always been easy listening to Him and following but when you "get" what He is trying to tell you and "go" where He is trying to lead you its unbelievable...things just "make sense". What has He placed on your heart? Are you listening? Hard to hear if you don't even know who it is that is calling you. I hope you do. Life will never be the same. Its a roller coaster ride you never experienced with peaks and valleys...but its quite a ride!
My Story
I was born and raised in Colorado. Growing up I remember being taught to be very vigilant about checking for ticks after coming home from being in the mountains or while we were at summer camp. I moved to Texas the day after I graduated from high school. I attended Tarleton State University my first year, but then transferred to Sam Houston State University. Chris and I met at Sam Houston State University the fall of 1992 at the BSU (Baptist Student Union). During our time at SHSU we hung around the same group of friends and dated off and on, always remaining great friends. The summer of 1993 I worked at Forest Glen (located in the Sam Houston National Forest) as a counselor and Chris was Program director. I enjoyed working under Chris. That summer was the beginning of my camp experience. From then on I worked at Forest Glen on the weekends in the kitchen and as a counselor during the summer. Chris and I went to Camp Cullen for ropes training and I met a lady in charge of their horses. When I wasn't at Forest Glen on the weekends, I was at Camp Cullen working with the horses. I also worked one or two of their winter camps.
Chris proposed to me January of 2007. That April, I believe it was Easter weekend, Chris loaded my car, which was loaded with most of my belongings, onto a trailer and drove me to Cleveland, Ohio for my 6 month Music Therapy internship. Chris came to visit me once during that six months before he driving back up to pick me up and drive me home in October. I graduated from college December 20, 2007 and we were married the following Saturday, December 27, 2007 (Yes, Christmas was in between...we called it the Wedmas!).
Our relationship before we got married and after we got married was always marked with being outside and enjoying nature. We enjoyed hiking through parks and even through cemeteries. We worked at camp the summer of 2008 as lifeguards but mid summer I was hired as a music therapist for a company based in Austin. I was assigned to work in Rockport and stayed with my college roommate during the week, and drove home on the weekends. Towards the end of the summer I got a call on the way to a therapy session in Rockport, that our apartment had flooded due to a supply line to the toilet on the second floor apartment busting in the middle of the night. Chris was at Forest Glen and I was in Rockport. I don't remember the drive home, but I remember thinking that God must have lifted my car up and placed me home safely. Shortly after that I started working for contracts closer to home.
I worked as a Music Therapist till the end of the 1999 summer. Chris was a teacher and had summers off and a week off at Thanksgiving and two weeks off at Christmas. I decided I wanted to share those with him. So I went back to school to get my teaching certification and at the same time began working as a middle school choir assistant the fall of 1999. I also began teaching piano lessons privately. Somewhere in our early years of marriage we bought a tent and some camping gear. I'm not sure how many times we went camping. I specifically remember two and one was with our puppies sometime in 2000 or 2001.
My health issues started not too long after we got married.
* In February 1998 I had swollen lymph nodes in the neck and no energy and was hospitalized and diagnosed with CMV (cytomegalovirus).
* In February 2000 I was diagnosed with mono and was told my CMV was acting up. I, again, was experiencing swollen lymph nodes and no energy. I was also having difficulty with stiff neck and shoulder muscles. I would reach for something and pain would shoot through that shoulder muscle as it tightened up. The pain was excruciating and it would take several minutes or longer for it to "chill out".
* In May of 2000, I began noticing a loss of strength in my hands, and was experiencing consistent headaches, still had swollen lymph nodes, and was having difficulty with my ears, particularly the left one as if it had a lot of pressure in it. An MRI of the brain showed a "growth" above the left ear.
* June 2000 I saw Dr. Faiz, a neurologist, who said the "growth" was cancer and needed to be surgically removed. Upon other visits with him we questioned his sanity and judgment and began seeking a second opinion.
* August 2000 I saw another neurologist who ran blood work to test for Lupus, arthritis, and other things and it all came back negative. He suggested seeing an ENT doctor because, in his opinion, the growth was in the ear. A friend of mine suggested her ENT, Dr. Franklin. He took the films to Methodist and had colleagues look at it and they all agreed that the "growth" was a jugular bulb that is bigger on the left side and the reason it showed up on the MRI was because the fluid on that side was flowing slower. He referred me to Dr. Jones to make sure there wasn't a connection between the MRI and the mono. I went to The Hand Center and saw Dr. Lee who, without even looking at my hands, said I needed surgery for carpal tunnel syndrome and wanted to schedule surgery immediately. I was given splints to wear that I began to wear at night and during the day if my hands were bothering me. We rejected the suggestion for surgery. I didn't believe I had carpal tunnel syndrome.
* September 2000 I saw Dr. Jones and she did not see a connection between the MRI and the mono and she mainly focused on the headaches I had been fighting. She put me on Effexor as a preventative and gave me Maxalt to fight off any headaches I had. She reviewed the report from Dr. Faiz, and she did an EMG and NCV, and stated it didn't show significant carpal tunnel. She disagreed with Dr. Faiz's finding. I saw Dr. Franklin again who had spoken with Dr. Jones. We discussed the swollen lymph nodes and earaches and he ordered a hearing and balance test and a CT of the temporal bones and MRI of the soft tissue of the neck (lymph nodes). All came back normal except the MRI of the lymph nodes showed them to be enlarged. Dr. Franklin said he was at a loss as to why the lymph nodes were swollen and why the ears ached.
* October 2000 we met with Dr. Franklin again who said the last resort was to biopsy the lymph nodes. I suggested the possibility of allergies. He prescribed allergy testing. The headaches weren't any better but got worse. I saw Dr. Crouch, as referred by Dr. Jones, for my hands. He said he thought it was Carpal Tunnel Syndrome and Thoracic Outlay Syndrome, but did not recommend surgery. He prescribed Mobic as an anti-inflammatory and physical therapy.
* November 2000 I began physical therapy. Initial exam stated extreme rolled shoulders, my head sticking about 4 inches forward from where it should and some signs of scoliosis. Physical therapy did not help with the hands. Had allergy testing done and was told I was allergic to ragweed, dust, mold, trees, grass, and dogs. It was also determined that I was allergic to milk, bakers yeast and brewers yeast. I began taking allergy shots for both the environmental and food allergies once a week. Saw my OB for my yearly and she prescribed taking Ovral for 3 consistent months at a time to decrease the headaches. This did not help.
* December 25, 2000 went to the ER with the worst migraine I had ever had complete with vomiting.
* January 2001 I saw Dr. Jones to follow up on the migraine. She gave me a shot and nasal spray to carry around with me in case a migraine that bad hit again. She feels the migraine was due to withdrawal from Effexor (because I had run out), stress from the holiday, and an oncoming upper respiratory infection.
* April 2001 ER for migraine
* 2001 I had more blood work and MRI's done and saw 2 other doctors for my hands. Several times I was tested for Epstein-bar virus, lupus and thyroid.
* Early 2002 my OB took me off of Ovral because research showed that women on Ovral with a history of migraines were at an extreme high risk for a stroke. I had been on Ovral since 1992 to control ovarian cysts. Getting off of it was good since we wanted to start trying for a baby.
* October 2002 I had pneumonia and we miscarried our first child in the midst of it.
* January 2003 we began seeing a fertility specialist
* April 2003 we were ready to take a break from the fertility regimen when we found out we were pregnant with Rebecka. Pregnancy was healthy and went without a glitch. I did start to have difficulty with my heart beating irregularly which I had experienced my senior year of high school. Up till now I had ignored it because it was tolerable but during this pregnancy it increased to a point it concerned me. My OB/GYN suggested seeing a cardiologist and I began seeing Dr. Karim. I was told I had a regurgitate heart valve (leaky valve). He wasn't concerned about it and said it didn't require medication unless it really bothered me. I could live with the "weird" feeling now that I knew what it was and the last thing I wanted was to be on medication. I began seeing Dr. Karim once a year to monitor these heart hiccups.
* January 1, 2004 Rebecka Noel Saulnier was born. At the 6-week check up with OB we were told that if we weren't pregnant within 6 months we would probably not have any more children. I remember driving home crushed but I remember Chris saying so boldly, "she doesn't know our God".
* January 2005 I had accepted that Becka would be our only child and was counting my blessings.
* March, Good Friday, 2005 we conceived Madilyn. It was a rough pregnancy and at week 22 started having contractions and I was put on bed rest for the remainder of the pregnancy.
* December 6, 2005, after an ultrasound revealed that Madilyn was losing weight in the womb, labor was induced.
* December 7, 2005 Madilyn Grace Saulnier was born.
* July 2006 starting seeing a chiropractor, Dr. Riley, when I ended up with what felt like a pinched nerve in my neck and I couldn't move my neck side to side.
* November 2006 I had my tonsils out after year after year of fighting illnesses. I did see a decrease in the number of times I was in the doctor's office with an infection and needing antibiotics. However, my husband pointed out that less then a year later my symptoms returned. All the antibiotics may have been helping.
Before Becka was born I was sick quite often with upper respiratory infections. There were years where I felt I lived on antibiotics. After a while, when antibiotics weren't kicking it fast enough, my GP started giving me steroid shots to get over the infections. There was one year, and it may have been right before I had pneumonia, that I had a "hole" like area on my hip from so many steroid shots. When I inquired to my GP he said that the steroid shots deteriorate the tissue. After Becka was born the URI reduced in number but when I was sick, I was so sick that my ENT would give me a steroid shot and a prescription for antibiotics so I could get over it, especially since I had two little ones to take care of.
From the time I was pregnant with Becka till the fall of 2007 my headaches and hand pain subsided tremendously. I still had some difficulty with my hands but it was mild compared to before Becka's pregnancy. During this time I had also forgotten about the health issues surrounding the year 2000. Some of it was forgotten and some of it had just become a natural part of my life that I didn't think about it too much.
The summer of 2007 was extremely stressful complete with a car wreck that involved the entire family and totaled the car (this was my 4th car wreck to be in). It was during this summer that I noticed that I wasn't "dealing" with things very well. I chose to begin seeing a christian counselor to work through whatever it was so I could be the best wife and mom I could be. August of 2007 I began having sharp pains in my right thumb muscle area. I attributed it to getting a new laptop and using the mouse on it, but it continued to get worse and interfered with my piano playing and daily life. Sometime in October of that year I mentioned to Dr. Riley, my chiropractor about my right thumb. He ran MRI's of both hands to have a comparison. Oddly, both hands showed the same thing: moderate degenerative narrowing involving the distal and proximal interphalangeal joints. I was told that this was uncommon for someone my age but not surprising for someone who plays the piano like I do. I was also told that it wouldn't be the cause for the pain and weakness I was experiencing. He suggested having an EMG/NCV done to look at carpal tunnel. I saw Dr. Slaughter (yes, that's his name) for an EMG/NCV and he said he would be hard pressed to call it carpal tunnel. He recommended splints to demobilize the thumb, and paraffin baths (putting the hand in melted wax, creating a heated glove around the hand). Dr. Riley would try to "mess" with it and every time he did it got worse. The splints didn't work and neither did the paraffin baths. Any time I used my hand it got worse. I used my hands all the time, especially during this time where I closed my piano studio I had at my house (for almost ten years) and began working for the fine arts school our church started.
January of 2008 I was referred by Dr. Riley to Dr. Blackwell, an orthopedist. He looked at the hand and with little said and very little examination he prescribed an anti-inflammatory (a.k.a. I don't know what to do so take this and come back in 2 weeks...). We took it and went back in 2 weeks and I have never seen a dumber founded doctor in my life! Basically, he admitted he didn't know what to do and basically dismissed us.
Chris found out about a hand specialist from work and we saw her in February 2008. Again, carpal tunnel was brought up but they wouldn't say it was or it wasn't. Dr. Staton recommended either putting the right hand in a cast for a month to give it rest or doing a steroid injection in the joint on both hands. When I asked her what she would do since she uses her hands she said the injection because she has to be able to use her hands. I was in the same situation. I needed my hands with playing and teaching piano and caring for two little girls. She said that if it was carpal tunnel I would get relief and if it wasn't I wouldn't. Steroid injection was put into right hand thumb joint and the left hand wrist. The right hand was immobilized in a splint to give it rest. No benefit came of this and they were at a loss. They decided I needed occupational therapy.
When I showed up for occupational therapy the OT wasn't into her assessment 5 minutes before she excused herself and came back with a physical therapist. The OT was blown away by the tightness in the shoulders and neck and said that had to be addressed before she could do anything with the hands.
I explained I have had tight shoulder and neck muscles since at least 2000. My chiropractor often messaged my neck and shoulder muscles before adjusting me. I remember asking him if it was normal for them to be that tight all the time. He said no. So, the PT saw me twice a week for 8 weeks. She gave me exercises to do at home to strengthen shoulder muscles and bring the head back into alignment and she would message the right hand and left hand because now the left hand began to hurt just like the right hand. After 8 weeks and no change in shoulders, neck, or hands the PT was at a loss as to what to tell me. She recommended I see a holistic doctor and gave me the name of a couple but said they didn't take insurance. We couldn't afford that at this time.
In May of 2008 I saw Dr. Jones and we talked about what was going on and we revisited the "growth" that was found above the ear and she ordered a MRI. It was normal. It was also about this time that I noticed my memory wasn't as good as it used to be. I have always been one who is very observant and could remember things very well. I noticed I wasn't quick to remember short-term things anymore as if it had been stored in the wrong compartment in my brain. I felt like a computer struggling to find a file. Since at least as far back as when I married Chris I had always joked about not being able to think of a word but I could tell you what letter it started with. This became increasingly true but now I was noticing that it was more then that. When I would try to share this concern with people they would joke around and say I was too young to be having those problems. I figured maybe it wasn't as bad as I had observed and tried to ignore it.
I began researching online what could possibly be going on. I found myself one night looking at MS (multiple sclerosis). I was amazed at how well it "fit". It fit more then anything else that I had read. A fear weld up inside at the thought but if it was, at least we would have an answer. I met with Dr. Jones to discuss the possibility and she immediately turned the idea down and shut me down. She wasn't even willing to discuss it or anything else. I was very upset leaving her office.
I began looking at things and figured we had seen a lot of doctors and done a lot of tests. I wasn't any better, but had gotten worse with my hands. I had prayed so much for an answer and felt there was none. I began to consider that we would never find an answer. I also decided I had enough with doctors and tests. You can only spend so much time and money. There obviously wasn't an answer and so I decided to let it go and start being more thankful of what I could still do rather than focusing on what I couldn't do. It was a conscious choice and a daily one since it wasn't easy that I couldn't play the piano like I used to and had difficulty doing simple things. But, I figured, "hey, I'm not dying. I need to be thankful for what I can do and not lose anymore time chasing this thing".
Chris has felt God's hand on him to be a youth pastor of almost seven years at this point. The weird thing is we both felt, for whatever reason, that we would find the answer to my health issues when he was hired as a youth pastor and we were put on new insurance. Neither of us could explain why we felt that way. The insurance he had through the school district was good insurance with a low deductible...but we BOTH felt this and yet we had no clue as to when God would put him in a ministry job.
Once again in January of 2009 I became very sick again with no energy (I could barely function) and it felt like I had to labor just to breath. Thinking it was my allergies I saw Dr. Franklin, my ENT, and he did a breathing test, which was normal. This was happening more and more where I felt I couldn't catch my breath but my inhaler didn't work and the breathing tests would be normal. He put me on an antibiotic and gave me a steroid shot (which now felt routine each time I saw him because the antibiotics just wouldn't kick it) and he ordered a chest x-ray and advised me to see my cardiologist to just be safe and cover all our bases. Chest x-ray was normal. I saw my cardiologist, Dr. Karim, and he felt it was something called pleurisy, which is an infection of the lining of the lungs. He said it sometimes happens after fighting a viral infection and it wouldn't necessarily show up on the chest x-ray. He told me to take ibuprofen for several weeks and it should clear up. He also suggested having a physical done after hearing of the frequency and severity of how I was sick.
I had spent so much time focusing on my hands the last several years that I couldn't remember that last time I had a physical. I called my OB/GYN for a referral for a doctor for a physical and she gave me Dr. Stubbers name, an Internist. I went in for a physical in February of 2009 and was checked out to be "normal". I didn't mention the problems with my hands as I had already spent extensive amount of time seeking this out. She ran blood work and checked it off as normal.
In March 2009, Chris was hired as a youth pastor for Simonton Christian Church. It was incredible! I remember pulling into the parking lot of this church to meet the pastor and for Chris to meet with the search committee. Immediately I said, "I am home". It was the strangest feeling I have ever had. I remember thinking, "sometimes you don't know how far you have strayed from home until you return home". It was a breath of fresh air. We came down a second time to visit on a Sunday and for Chris to meet with the board. After sitting in the service and driving back to the Stout's house for a rest before Chris met with the board, I told Chris, "this is our new home". Chris looked at me weird and said, "I haven't been hired yet" and I replied, "You may not know it yet and the board may not know it yet, but I do". It was a bold statement I couldn't believe I was saying but it was an overwhelming feeling in my soul. That night, the board offered Chris the job. Our entire world was about to change but we didn't realize just how much. He officially started April 8th, going down on Wednesdays and Sundays until his contract with the district concluded in May (an answer to prayer because Chris had always been concerned with leaving his students hanging if God called him to a ministry job in the middle of a school year.) In April I began cleaning out, packing and preparing the house to be staged to sell. It was in doing this that I realized how much strength I had loss in my hands. I used to be able to paint a straight edge and I just couldn't do the things I had done in the past when we painted the rooms in our house. This was extremely frustrating but I vowed to focus on what I could do and looked forward to the big change happening in our lives.
Sometime in the Spring of 2009 my shoulders and hips were increasingly bothering me. It made sleeping difficult and there wasn't a day that didn't go by that I wasn't in some kind of pain. I mentioned this to Dr. Riley, my chiropractor, hoping he would "tweak" me and it would help. He did an x-ray and found that both shoulders were equally bone on bone. This was strange as usually one is more then the other but not equally. Dr. Riley ordered MRI's of both shoulders and they showed tendonitis in both shoulders. He recommended seeing Dr. Slaughter again for another EMG. In May of 2009 Dr. Slaughter did another EMG. I liked Dr. Slaughter because he looked at the grand picture and looked at the history. He really tried figuring it out. After considering the history (I had now seen him twice in almost two years) he felt it was something systemic and not something directly with my hands. He recommended seeing an Internist about autoimmune disease. This was the last thing I wanted to do. I had just accepted that I wasn't going to pursue this thing any further but just accept what was going on and move forward. After careful consideration I decided, "okay, I will see one more doctor".
Dr. Stubbers didn't see me more than five minutes before saying she did not think it was an autoimmune disease and she referred me to Dr. Pleitez, a neurologist who specialized in muscles. Dr. Stubbers did run more blood work just to make sure and checked off that is was "normal".
Dr. Pleitez? Muscles? She specializes in muscle? I had been asking doctors for a year now what kind of doctor specializes in muscles. This interested me. This is a route we hadn't been down before. Could this be the answer? We would have to wait two months to find out. But it was during this time that I placed it all in God's hands. It wasn't a matter of call and get an appointment but call, fax information and wait and see if the doctor "chooses" to see you. So, I prayed about it. I figured if God wanted me to see this doctor then they would call and if He didn't, they wouldn't. At first this was really difficult and I wanted to call Dr. Stubbers and ask if she could pull any strings to get me in, but I didn't. I just kept praying. Again, I figured there wasn't anything seriously wrong with me or they would have found it already. I couldn't be any worse off if they didn't call.
During the summer of 2009 things were extremely stressful. With our house on the market and having to keep it clean with two little girls, the consistent showings of the house (a blessing), and a contract that fell through, Chris busy with a new job driving back and forth and the girls and I driving back and forth, not really feeling we had a place we could call our own but felt like we were in limbo, and several other things, I began to notice that I had difficulty handling things I felt I should have been able to. Yes, it was stressful but there were so many positive things as well so why, in the midst of a positive change, was I having so much difficulty controlling my feelings. At a glance one would agree it was a stressful time and would understand why I was having difficulty, but the new relationships in my life didn't understand and I could see a big difference. Something wasn't right. It was during this time that I noticed my memory was worse. I had tried to ignore it for over a year but now there was no denying that something was wrong with my memory. I began keeping sticky notes in the car, in my purse, around the house because I would think of something and if I didn't right it down and create a visual to trigger it later, it was gone for good. I began seeing this in relationships. A friend had asked me to go somewhere with our girls and I had completely forgotten about it till she called the day before. This was extremely unusual for me. I noticed I was having difficulty remembering the names of people in our new church. This only added to the stress of this time.
At the end of July we received another contract on our house. It was also this last week in July 2009 that Dr. Pleitez's office called to inform us she would see us. Crazy thing was, our new insurance with a new deductible (the old one had been met as you can imagine) began August 1st, and our appointment with Dr. Pleitez was August 6th. They couldn't get us in before then and to add to situation, they didn't take our new insurance. We trusted in God's timing on this, as we reflected back to how we felt we would get an answer after Chris began a ministry job and we were on new insurance, but we never imagined that they wouldn't take the new insurance. My first appointment with Dr. Pleitez on August 6th, 2009 was for 3 hours. She was the first doctor to be so thorough, taking into consideration the history, and asking lots of questions. I felt she was extremely sincere and and determined to figure this out which felt nice after so many years. She ordered another EMG, which we had on August 17th. It was very uncomfortable and extremely painful when she inserted the needle in my right thumb area. Again, the test came up empty as to what was going on. When she called with the results she stated she was convinced there was a muscle disorder going on but she couldn't put her finger on which specific one it was. She recommended either starting on meds and treating it or doing a muscle biopsy to further rule things out.
At this time, we closed on house and moved into a temporary living situation. I was trying to get us settled and Chris was still adjusting to the new job. Chris and I prayed and discussed health situation for quite a while. We decided we had too many questions for us to just leap into a muscle biopsy and we wanted to discuss them in person rather than over the phone. We met with Dr. Pleitez September 17th to discuss the options, more specifically the muscle biopsy. My biggest fear was going through the muscle biopsy and getting a "normal"...I wasn't sure I could take another "normal" result, particularly after something so invasive as a muscle biopsy. I remember her saying that sometimes they get people in the office that they are convinced have a muscle disorder but they are unable to "label" it. By doing the muscle biopsy they could eliminate what it wasn't. I wanted to be sure the biopsy would serve a bigger purpose other than just marking off another test we had done. At the end of the visit she had us convinced the biopsy was the way we needed to go.
With us going out of town the following week we scheduled it Monday, September 21st and the week out of town would give me time "down" to allow the biopsy to heal and where I wouldn't need to use that arm as much. The night before the biopsy I woke up with the worst muscle cramp I have ever had. My right calf muscle tightened and stayed tight for more then 5 minutes. When it had stopped "grabbing" I tried getting out of bed to stretch it out but couldn't walk on it without it grabbing again. It took me a couple hours to get back to sleep and even the next day it remained sore like I had over worked it the night before lifting weights. From this point forward it became common for muscles to cramp. Out of nowhere my big toe would cramp, or my calf muscle would cramp. It was more common on the right side but I had noticed things appeared to start on the right side and migrate to the left over time. I noticed that the arches of my feet hurt in the morning when I got of bed. Things appeared to just go down hill. I was in more pain each day. I became grumpier and my "fuse" was so short it didn't take much to frustrate me.
We waited more then 4 weeks for the muscle biopsy results. During this time my symptoms increased. I also became very ill, not having any energy and could barely get out of bed. It was during this time that the swine flu was rampant and several people voiced concern that I was ill and needed to see someone. I had seen so many doctors and had poked so much in the last months that just the thought of seeing another doctor was exhausting. I received the name and number of a GP just 5 minutes away and decided I would go just so everyone knew it wasn't the swine flu. Dr. Heidi Schultz immediately said she didn't think it was the swine flu. When I share that I had recently been diagnosed with a muscle biopsy but that we didn't know anymore then that, I received a weird look. She voiced her concern that I might have mono and ran the test for that. As soon as she said mono I immediately thought, "wow, I remember having that in college and the early years of marriage...why didn't I recognize that? It sure does feel like mono" and the test came back confirming that is was mono, a recent case of it.
At this point I had spent more time not feeling well in the last year and a half then I had feeling good. As a result, I had learned to function, make do, get through the day the best I could and then crash at night. Unfortunately, it usually took its toll on my moods and I was grumpy most the time. It didn't help that I was in pain all the time.
The results of the muscle biopsy finally came in and Dr. Pleitez called. I new what I was going to hear..."normal". The biopsy didn't point to any specific muscle disorder. It was normal. Still convinced that I had a muscle biopsy, Dr. Pleitez prescribed a muscle relaxant that I began taking. I took it for almost 3 weeks with no relief in my symptoms. Now I was in pain and in a deep fog. It was all I could do to function. I called her to let her know that there didn't appear to be any symptom relief and she said to work my way off of that medication and then try another one. This was very discouraging as I picture the next several months going on and getting off meds.
It was during this time that someone in our church recommended his doctor, Dr. Kolodjski, and felt strongly that he could help. The funny thing was, another friend of mine started seeing Dr. Kolodjski a couple years ago and I had a strong feeling then that he would know what was going on with me but I felt he was out of reach financially.
Trying to be positive and compliant, I began to work my way off the first medication. I was almost off the medication when I began to have severe, sharp pains in my mid back that stretched forward along the bottom of my rib cage on the right side. I also had pain down the whole back right side and the pain along my shoulders was worse. I described it as the letter "F" down the back. I called to be sure, for some crazy reason, that it wasn't a side effect of coming off the medication. She didn't think so and suggested I see my GP to be sure I didn't have the flu. She said that if my GP was sure it wasn't the flu then to go back on the medication full dose. If I didn't get any relief then I needed to go to the emergency room. I did as I was told. I saw Dr. Schutz who clear me for swine flu. I went back on the medication full dose. Friday, November 13th, 2009 I called and communicate there had been no change for the better, only for the worse. I was in more pain and not feeling well at all. She said to give it the night and call her in the morning if things weren't better. Saturday, November 14, 2009 I called and she sent us to the emergency room. Ugh! At the emergency room, they were convinced I had a gull stone. They ran blood work and did an ultrasound. The doctor informed us that the blood work and the ultrasound were "normal" and he had spoken with Dr. Pleitez regarding my situation. He recommended we get a second opinion on the muscle disorder diagnosis.
It was the trip to the emergency room that convinced Chris we needed to see Dr. Kolodjski. On November 18th, 2009 I had my first appointment with DR. Kolodjski. Not even five minutes into our appointment he mentioned that I had classic symptoms of Lyme disease. Not knowing much about Lyme except how you get,
I brushed his comment off. I had heard the names of so many “illnesses” in the last two years that it fell numb on my ears. He prescribed a week of “detox” and said that if it weren’t Lyme I would see some symptom relief. I spent the next week (Thanksgiving week) following a detox diet. I did not see any symptom relief during this week and so, toward the end of the week I began looking up Lyme disease. I was immediately floored with what I found and how well it “fit” me. I began to take out old medical records and again was astonished at a letter I found that I had written a doctor back in 2000. Everything I struggled with back in 2000 I was struggling with again only on a bigger scale. Things I had been fighting since 2000 were on the symptom list with swollen lymph nodes at the top of the list. The other thing I noticed as I was going through previous medical documentation was the lab work I had done through Dr. Stubbers that showed Vitamin D deficiency. Chris and I had just recently seen a story on the news about vitamin D deficiency and what it can do. The lab work done in February was quite deficient and yet she marked it off as normal. There were several other tests done indicating out of range and yet marked off as normal.
We followed up with Dr. Kolodjski on November 30th and he again brought up Lyme disease. Since I hadn’t seen any symptom relief during detox week, we agreed to do the Lyme test. The test (done through LabCorp) came back with one titer positive. According to CDC standards this is not considered Lyme. However, Dr. Kolodjski said that with clinical presentation and the one titer he felt it was Lyme. He ran two blood tests that would help verify his diagnosis, CD57 and HHV-6. The CD57 came back as 28 (normal is over 60) and HHV-6 at 1280 (normal is below 160). Dr. Kolodjski said these numbers showed an immune system that is very suppressed and reinforced his diagnosis of Lyme. He referred us to Dr. Forester in Louisiana whom he had spoken with on the phone. Dr. Kolodjski said that Dr. Forester would want to see the Lyme test done through iGenex lab instead of through LabCorp.
We were out of town for two weeks for Christmas and came back the first week in January when we had the Lyme test done and submitted through iGenex. I began praying that the iGenex test would be black or white, leaving no room for interpretation. I prayed it would either be clearly negative or clearly positive, even by CDC standards.
On January 11, 2009 we drove to see Dr. Forester in Louisiana. Dr. Forester talked about Lyme disease with a lot of passion and went over a lot of information regarding Lyme and HHV-6. He asked us to do our research at the hotel and come back the next day and he would address any questions we had. We did just that and I had a page of questions for him regarding Lyme and HHV-6. At this appointment, not having the iGenex test results back yet, he said he couldn’t legally treat the Lyme so he focused on the HHV-6 levels, which he was concerned about. He gave us a prescription for Valcyte, and he gave us a prescription for Doxycycline to start taking if the iGenex test came back positive for Lyme. He also performed extensive blood work, retesting the CD57 and HHV-6 along with other tests.
We were unable to fill the Valcyte prescription due to a cost of $2700.00 for a 30-day supply (and this was after insurance). The plan at the time was to be on it for 6 months. We began to look into patient financial assistant programs. I called Dr. Forester to get some more information to complete the application for the assistant programs and he said that the weird thing was the blood work he did showed normal levels and didn’t warrant the medication. He said he couldn’t explain it and said to hold off on the Valcyte.
On Tuesday, January 19th, 2009 I began a strict diet of no sugar, starches and carbohydrates as prescribed by Dr. Kolodjski and supported by the research I had done that any sugar will feed the bacteria. My diet now consisted of a detox shake in the morning and meats and vegetables prepared in such a way as to avoid food sensitivities and sugars/carbs.
We received the iGenex test results Friday, Janaury22, 2009 and they were positive by CDC standards for Lyme. I began taking Doxycycline Saturday, January 20, 2009. We returned to Louisiana to see Dr. Forester February 15, 2009. This appointment was frustrating to say the least as I felt I had to remind him as to why we were there. He then remembered me as the one with high HHV-6 levels and again expressed that he didn’t understand why the levels were now normal. He said he wanted to test them again. Since we had received the iGenex test results, started the Doxycycline, and not yet having a chance to ask my questions, I began asking questions. I felt that if I hadn’t steered the conversation this way we would have left the appointment in the same shape as we came. One of my concerns was what I had read about monitoring Doxycycline levels due to the fact that it is ineffective unless there are high concentrations in the blood for 48 to 72 hours at a time. When asked about this, he then added that to the blood tests ordered that day. I asked about how my research all agreed that my best defense against Lyme, because I have had for 10+ years, was with antibiotics administered through IV. He fumbled a little as he stated that very few of his patients had that and proceeded to change the direction of the conversation. I asked him to go back to talking about the IV and he then said that he couldn’t prescribe that over state lines. I asked him if he would work with another doctor in Texas if I found someone who could prescribe an IV and he said yes. I then asked if there was a specific doctor or could it be any doctor and Dr. Forester wouldn’t answer it directly. After some persistence on the topic he then gave us the name of Dr. Salvato in Houston and said he had worked with her before. I asked him about the other forms the spirochete can take and what we can do about it since the research I had read showed Doxycycline not effective on all forms of the bacteria. He then said he could prescribe flagyl as a pulse therapy. When I shared with him that I am ready to fight this thing and not putts around with it any longer and that I realized it was going to take a while and that I had already written off this year to strictly fight this disease, he then said that he could prescribe an antibiotic administered by injection (Claforan). I felt it was like pulling teeth and nails to get anywhere and left the appointment exhausted and frustrated. If I hadn’t done my research and asked the questions would we be getting anywhere with this disease?
The frustration from the appointment with Dr. Forester was only exasperated by the difficulty we ran into filling the antibiotic for the injections. Walgreens said our insurance wouldn't cover it and it would cost over $1000 for 28 days of Claforan. They didn't mention there was a generic. Then Walgreens said they couldn't order it at all due to the way it has to be reconstituted or mixed. It required a very sterile environment. Here we were again, given a prescription to help us and we are having difficulty acquiring it. After much research on line (what would we do without internet) we discovered a generic (cefotaxime) and Chris found where it came in a form that could be reconstituted at home. After several visits to Walgreens and a week later, we were able to start the injections.
After our visit to Louisiana we began trying to find a doctor in Texas, preferably close to Houston that could manage my Lyme case since we were running into obstacles over state lines. Surely, with our great medical center in Houston, there is a doctor that is competent in treating Lyme. A couple ladies in our church had shared that they had a friend who fought Lyme disease and I was able to talk with her. It was so good to hear someone else share some of the same symptoms and to hear how she fought through it and is on the other side of it. I was so curious to find out who treated her here in Houston and she shared that Dr. Salvato treated her, the same name given to us by Dr. Forester. We looked up and called Dr. Salvato. Our call was never returned by her or her office. I had the strangest feeling it had to do with the mention of Dr. Forester or the word Lyme. In some ways it surprised me, and in other ways, based off of what I have read, it didn't. As we further pursued what God wanted us to do, my ENT, Dr. Franklin, was heavy on my mind. I have so much trust in him and I would trust my life to him. Little did I know, Dr. Franklin was on Chris' mind as well. Not knowing what would happen or how he would respond, we made an appointment to see Dr. Franklin to talk to him about Lyme. He reacted just as I know him...caring, concerned with the amount and strength of medication I was taking, and pointing us in the direction he knew. He gave us the name of an infectious disease doctor down in the medical center, Dr. Samo. We had no sooner gotten in the car when we called his office, excited that maybe this doctor would be the one that would fight with us and help us beat Lyme. We were quickly discouraged when we found out he would be out of town will March 19 and further discouraged to learn that he had concerns with iGenex. We were asked to fax in our latest tests and he would review them and decide if he wanted to see us. We are still praying about where we are supposed to be and working on Dr. Salvato and Dr. Samo, or keeping our eyes and ears open if it is someone else.
My blood tests from Dr. Forester came back "normal", including the HHV-6 levels again. Dr. Forester said the Doxycycline levels had not come back yet. I waited a couple weeks and again called to check on this particular test. I had to leave a message and I specifically requested the Doxycycline level test results. Yesterday, I received a phone call from Dr. Forester restating that the blood work came back "normal" and mentioning nothing about the Doxycycline. Chris called them back, again having to leave a message, specifically requesting information regarding the Doxycycline blood test. Today, I received a message that their lab does not do that test, meaning the test was not done, nor were we given orders to have the levels checked anywhere else. I remember very specifically asking him if he could do that test at his office on that day and he said yes. This was very frustrating news as I feel there isn't a doctor managing my Lyme right now and helping me fight this disease. Further, I could be throwing money down the drain and filling my body with chemicals and none of it making an ounce of difference in killing the bacteria and helping me get my life back. We have been asking people to pray, and we have been praying that we will find favor with Dr. Samo or that God will direct us to a competent doctor in Texas that will help us fight and beat Lyme disease. I am not the worse person off with Lyme, but the symptoms progressively continue to get worse and each day is a struggle to function either physically or mentally. I'm ready to fight with all I have and I have surrendered this year and more to fighting Lyme.
The medications I am currently on are:
Prescribed by Dr. Forester
* Doxycycline 200 MG twice a day
* Flagyl 250 mg on pulse therapy...as of March 21 I am up to 1250 a
weekend. Dose increases by 250 mg each weekend.
* Cefotaxime (generic of Claforan) 1 gram injected in the gluteus maximus
twice daily.
* Compounded Thyroid 1/2 gram daily
* B-12 3ml injected twice a week
* Cyclobenzaprine (generic for flexeril) 10 mg daily at night
* Gabapentin (generic for neurontin) 600 mg daily at night
Prescribed by Dr. Kolodjski
* Metagest 3 at every meal
* Fish Oil 3 at every meal
* Hemagenics (iron) 2 daily
* Vitamin D-3 (5000 IUD) 4 daily
* Cataplex F 4 daily
* Proboulardi 2 daily
* Shake made each morning with Ultra Clear (liver cleansing), Ultimate Protein, Calcium Lactate Powder and Ultra Flora Plus.
Symptoms in 2000:
* Swollen Lymph Nodes
* CMV and mono
* Loss of strength in hands..difficulty writing, picking things up, playing the piano (my job/career), consistently dropped things, discomfort holding anything for any amount of time, unable to put pressure on hands/wrist, cramping, loss of fine motor,
* Headaches & migraines
* Muscle spasms in shoulders and neck...muscles always tight in shoulders
* Clumsy
* Memory...not able to think of words...just the first letter
* Bruise easily
* Sides of both thighs extremely sensitive and sore to the touch
Symptoms Today:
* Weakness, particularly in the hands....no longer play piano, difficulty picking things up or turning pages, difficulty writing, doing my girls hair
* Feet cramped, particularly the arches in the a.m...any of the toes will cramp at any time
*Cramped calves
* Loss of hair
* Speech difficulties...can't get words out or I stutter or slur words as if talking to fast
* Hoarse voice
* Extreme sensitivity to noise or light
* Loss of memory...short term appears to be almost gone.
* Difficulty thinking clearly...can't handle more then one thing at a time without feeling overwhelmed...difficulty processing what I hear or read
* Twitching
* Reduced eye/hand coordination
* Joints popping
* Muscle spasms...doesn't take much to make one mad
* Sores in mouth
* Joints sore and weak
* Always cold,...particularly feet which are so cold they hurt sometimes.
* Tired all the time...exhausted quickly or easily
* Sides of both legs and arms extremely sensitive
* Back pain, particularly in the middle...and when sitting on the floor my lower pack hurts as if it can't support the body
* Consistent tight shoulder and neck muscles.
