Today was the best day I have had in months. No fever, no sweating, no dizziness, no nausea....what a relief after yesterday being one of the worst days ever.
My doc wanted no treatments done today so I could rest. So, I just hung out with the kids. Hannah arrived this afternoon. She has a cold that I hope nobody else gets. Hopefully she can get well fast.
I am back on treatments tomorrow and hoping for positive results. Thank you everyone for praying and helping us in various ways.
Wednesday, August 29, 2012
What a day...
Tuesday was my roughest day here. It was a roller coaster all day. I had some good moments, but the bottom dropped out several times.
At the clinic, I did a chelation IV, multivitamin/mineral IV, IV C, autohemotherapy and IV ozone. I was dizzy, weak and a little nauseated when I went in. The autohemotherapy and ozone cleared my head and made me feel great, but that was then followed quickly by chelation and vitamins which plummeted my blood sugar and stirred up toxins that made me sick. I vomited 6 or 8 times and was too sick to drive myself to the hospital to get my infected/clogged picc line removed.
Cindy left work early to take me to the hospital. I brought a bag and she assured me it was ok to puke in her car. Thankfully, I made it there and back without any more trouble!
After the picc line was removed, my temperature dropped 2 degrees into my normal range and I felt better. It came out easily, unlike the last one, and my nausea subsided. I felt well enough to drive the truck back to Bill's.
5 minutes into the 20 minute trip home I got pulled over by an over zealous Lake Oswego crime stopper on a motorcycle and ticketed for "improper wearing of a seatbelt." It was my second time borrowing Bill's truck, which is a huge Toyota Tacoma. The seatbelt and seat are made for a 200 pound man, not a 100 pound woman. The belt goes across my neck and rubs annoyingly, so I subconsciously stuck the shoulder strap under my left arm while buckled to keep it from hurting. Who knew it is against the law to do this? I am such a danger to society! Copper Crime Stopper was merciless, so now it's either $110 to the city of Lake Oswego, or $70 plus 2 hours of instruction on how to properly wear a seat belt (really?) or stay later into September than I had planned to go to court and plead for mercy. Fortunately, Copper Crime Stopper couldn't dig up any other infraction.
I cried after I drove off, then I laughed. Could there be any more fitting ending to a roller coaster day?
At the clinic, I did a chelation IV, multivitamin/mineral IV, IV C, autohemotherapy and IV ozone. I was dizzy, weak and a little nauseated when I went in. The autohemotherapy and ozone cleared my head and made me feel great, but that was then followed quickly by chelation and vitamins which plummeted my blood sugar and stirred up toxins that made me sick. I vomited 6 or 8 times and was too sick to drive myself to the hospital to get my infected/clogged picc line removed.
Cindy left work early to take me to the hospital. I brought a bag and she assured me it was ok to puke in her car. Thankfully, I made it there and back without any more trouble!
After the picc line was removed, my temperature dropped 2 degrees into my normal range and I felt better. It came out easily, unlike the last one, and my nausea subsided. I felt well enough to drive the truck back to Bill's.
5 minutes into the 20 minute trip home I got pulled over by an over zealous Lake Oswego crime stopper on a motorcycle and ticketed for "improper wearing of a seatbelt." It was my second time borrowing Bill's truck, which is a huge Toyota Tacoma. The seatbelt and seat are made for a 200 pound man, not a 100 pound woman. The belt goes across my neck and rubs annoyingly, so I subconsciously stuck the shoulder strap under my left arm while buckled to keep it from hurting. Who knew it is against the law to do this? I am such a danger to society! Copper Crime Stopper was merciless, so now it's either $110 to the city of Lake Oswego, or $70 plus 2 hours of instruction on how to properly wear a seat belt (really?) or stay later into September than I had planned to go to court and plead for mercy. Fortunately, Copper Crime Stopper couldn't dig up any other infraction.
I cried after I drove off, then I laughed. Could there be any more fitting ending to a roller coaster day?
Monday, August 27, 2012
Monday news
Today I had a meeting with the doc. He outlined treatment recommendations. We're still waiting on some labs to finalize it all. He's doubling up treatments on me in consideration of our limited time. He is simultaneously addressing the root of my health problems as well as specific symptom relief.
I did my first neural therapy today. It was excruciatingly painful involving about 50 injections mostly in my stomach, some in the lymph nodes of my neck. I'm not afraid of needles and am not typically bothered by them, but two people injecting your stomach countless times HURTS!! My stomach looks like a pin cushion. Not kidding.
For those interested in what this is:
http://www.drkaslow.com/html/neural_therapy.html
No resolution on the picc. I'm hoping for tomorrow. If we don't have a replacement or fix lined up very soon, I am going to the ER to have it pulled. I'm not sure how many of my current symptoms are a result of this since they all overlap- fever, dizziness, fatigue, pain, nausea.... Symptoms of picc infection AND Babesiosis etc. When my gut feeling is no more waiting on this, I'll be in the ER. I hope we can find a doctor to work with tomorrow. My prayer is pull the picc (painlessly!) install a port and no problems with insurance coverage-tomorrow!
I got a new diagnosis today: Cytomegalovirus infection. My labs were off the highest reference point on the chart. Normal should be below 0.99. Test range goes to 5. My level is >5, but we don't know if it's 6 or 76. Either way, Dr V said this is a big player here and is every bit as important to address as Lyme and co-infections.
Other concerns are: liver enzymes are worse than the last (also bad) results. Killer T cells are extremely low allowing opportunistic infections to take advantage and overwhelm me.
Candida labs are really high. Lots of more minor issues...
I am overwhelmed and feel about as bad as I ever have the past 3 days.
Luckily, I have my sweet nieces to come "home" to. The picture below is Layla. She and Thomas play quite well and he has started calling her "Baby." Now, he has an Oregon and a Kansas "Baby!"
I did my first neural therapy today. It was excruciatingly painful involving about 50 injections mostly in my stomach, some in the lymph nodes of my neck. I'm not afraid of needles and am not typically bothered by them, but two people injecting your stomach countless times HURTS!! My stomach looks like a pin cushion. Not kidding.
For those interested in what this is:
http://www.drkaslow.com/html/neural_therapy.html
No resolution on the picc. I'm hoping for tomorrow. If we don't have a replacement or fix lined up very soon, I am going to the ER to have it pulled. I'm not sure how many of my current symptoms are a result of this since they all overlap- fever, dizziness, fatigue, pain, nausea.... Symptoms of picc infection AND Babesiosis etc. When my gut feeling is no more waiting on this, I'll be in the ER. I hope we can find a doctor to work with tomorrow. My prayer is pull the picc (painlessly!) install a port and no problems with insurance coverage-tomorrow!
I got a new diagnosis today: Cytomegalovirus infection. My labs were off the highest reference point on the chart. Normal should be below 0.99. Test range goes to 5. My level is >5, but we don't know if it's 6 or 76. Either way, Dr V said this is a big player here and is every bit as important to address as Lyme and co-infections.
Other concerns are: liver enzymes are worse than the last (also bad) results. Killer T cells are extremely low allowing opportunistic infections to take advantage and overwhelm me.
Candida labs are really high. Lots of more minor issues...
I am overwhelmed and feel about as bad as I ever have the past 3 days.
Luckily, I have my sweet nieces to come "home" to. The picture below is Layla. She and Thomas play quite well and he has started calling her "Baby." Now, he has an Oregon and a Kansas "Baby!"
Monday early AM
We got Hannah's ticket booked for Wednesday. She is flying alone on a nonstop. Pray for her travels. She's not a world traveler and TSA isn't exactly helpful with their confusing policies. I hope she skates through easily without a pat down sits by some harmless person, not a creep. : /
Today is my appt with Dr V to discuss "the plan" and all my blood work results. I'm excited and nervous about what is to come.
I likely will lose my picc line today. I got up at 1 am because it's bothering me. I think it has become infected and I am trying to make it to the doc appt to get it removed. I hope they can do that. I don't know where else to go, especially in the middle of the night.
I am really nervous about the removal of this picc because last time it was horrible. It is supposed to slip right out easily, but my body had grown attached to it and it pulled hard and stretched my vein like a rubber band every time she tried to pull it out. It wasn't the most painful thing I have experienced, but it wins the prize as THE most uncomfortable feeling I've ever had in my life. It involuntarily took my breath away every time she pulled. It was a good 15-20 mins instead of 20 seconds.
If this line comes out, I will need another one, or a port put in. After two failed picc lines I'm leaning toward a port. I hope this is possible, or it will mess all my home care plans up. Pray for this situation. I have to keep reminding myself, I'm not in charge here, God knows.
Today is my appt with Dr V to discuss "the plan" and all my blood work results. I'm excited and nervous about what is to come.
I likely will lose my picc line today. I got up at 1 am because it's bothering me. I think it has become infected and I am trying to make it to the doc appt to get it removed. I hope they can do that. I don't know where else to go, especially in the middle of the night.
I am really nervous about the removal of this picc because last time it was horrible. It is supposed to slip right out easily, but my body had grown attached to it and it pulled hard and stretched my vein like a rubber band every time she tried to pull it out. It wasn't the most painful thing I have experienced, but it wins the prize as THE most uncomfortable feeling I've ever had in my life. It involuntarily took my breath away every time she pulled. It was a good 15-20 mins instead of 20 seconds.
If this line comes out, I will need another one, or a port put in. After two failed picc lines I'm leaning toward a port. I hope this is possible, or it will mess all my home care plans up. Pray for this situation. I have to keep reminding myself, I'm not in charge here, God knows.
Sunday, August 26, 2012
Getting everyone up to speed
Some of you already know, but I'll give you the super condensed version of the history behind what is going on. Then, you will all have the background for the updates I post!
I got Lyme Disease 12 years ago when I was pregnant with William during the spring of 2000 as I cleaned the yard of the new house we had just bought out by Lake Perry. I chalked the resulting aches, pains, nausea and fatigue up to pregnancy morning sickness. My health which had always been extraordinarily good began it's slow decline. William was born seemingly healthy but he continued to get doses of Lyme through breast feeding and suddenly began to fail to thrive when he was 8 months old. We didn't know at the time why my breast milk was suddenly not good for him, but it wasn't. Although I wanted him breastfed, I followed my gut feeling and stopped and he recovered quickly on formula.
Around this time, I ended up with chronic hormonal issues, multiple fallopian tube infections, and ear infections. I was often battling some thing or another. I ended up in the ER for my tubes one night as they were about to burst with infection. I was told I wouldn't likely have any more kids from the damage done to my tubes and scar tissue from countless infections. We did nothing to stop a pregnancy and I went almost 4 years and got pregnant with Tom.
During my pregnancy with Tom, my symptoms flared and ear infections were every 3 weeks or so. A specialist said if I didn't get surgery I'd die from a brain infection as bacteria had whittled my ear bones away and were halfway through the skull bone behind my left ear. However, it couldn't be done while pregnant and I had 7 months left to go. So, when Tom was just weeks old, in 2004, I had a mastoidectomy and tympanoplasty to correct my ear problems. (removed most of the bone in my skull behind my ear, installed titanium ear bones and made a skin graft ear drum with skin from behind my ear.) So, no more ear infections!
In between these various problems, we lived a normal life and I was still much healthier than I am now. We didn't know the cause of all of this was Lyme and co-infections.
As far as Tom goes, soon after his birth, we discovered he was struggling with low T cell problems and was battling pneumonia and failure to thrive. His immune system was weak. He had a hole in his heart that typically would heal as a child grew, but his hole was enlarging and the docs were scheduling surgery for him. Unbeknownst to us, both he and Willy were born with Lyme and company and it was causing Thomas to sleep all day long and all night from birth. I had to wake him to nurse him because he didn't demand to feed. At 10 months old, when I didn't think he would live to age 1, we fed him an immune system support supplement and it not only turned around his T cell count but also eliminated a need for open heart surgery because his hole in his heart which was steadily getting worse suddenly spontaneously healed.
Fast forward to 2006. Jim suddenly has heart problems that are perplexing because he passes stress tests and echos, but it is affecting him daily. He misses 6 weeks of work for crushing fatigue, brain fog and chest pains. After 9 months of doctors and frustration, he finally gets a Lyme diagnosis. He responds well to treatment and a few months after he was returning to health I asked my doc about myself and we test me and all the kids. I wasn't surprised I had it but I had no idea about the kids. They all were positive. Lyme affects everyone differently. Hannah had chronic headaches, Jacob's legs hurt like growing pains but it didn't stop and Willy was having memory problems and learning delays. We began 1-2 years of extensive treatment. Jim even lost the tip of his right index finger to this insidious disease infecting his bone. We all responded well to the treatment, but it wouldn't take much stress and I'd be on the decline again and again.
For the past 6 years I've had good and bad times, but my bad days are worse and worse and my good stretches are shorter and shorter. We have tried countless treatments and there have been successes here and there, but all of them seem temporary.
In the past year I've gotten so sick we have altered our lives in many ways to compensate. We have spent multiple tens of thousands of dollars on treatments. Since many Lyme treatments often are not covered by insurance or expensive even when they are covered, we have struggled financially to keep our heads above the water. God has provided just what we need when we need it! We have experienced this in so many ways.
I am to the point now of needing more than just antibiotics. My organs and body are shot from treatments and I need to build up and support lost functions to have any chance of beating this. I chose to seek treatment in Oregon because I have family here and Oregon is more progressive. Laws allow natural and alternative treatments to exist alongside western medicine. When you are told by western medicine there is no cure for adrenal fatigue (because there is no pill for it/nobody to get rich off of it), then you are forced to seek someone who CAN help. Between my two doctors, in Kansas and Oregon, I'm hoping for a more balanced approach to treating this disease. It's become desperate and urgent that something happen soon. I've spent more time in bed than not this summer- sometimes up to 18 hours in bed and only 6 hours up for days on end. My memory is gone, speech/word finding center is not normal, body is in extreme pain, blood work is out of whack, and I have felt like I am more dead than alive for months. I'm hoping for a cure, or at the very least to tip the balance between my immune system strength and these bugs.
However, I believe there are reasons for everything and I am content and happy despite this situation and even if I never get well. Being sick has changed me in more positive ways than it has hurt me. It isn't what I planned for my life, but I have been more blessed by things I haven't planned than things I have planned. God has this too, I am sure of it. He works mysteriously at times through less than ideal situations (from our perspectives) and I'm happy to be used as a tool for His work if that is what He wants.
Now that the big one is out of the way, I can update as news or prayer requests arise! Thank you everyone for your concern and care for our family. I appreciate the prayers more than you know.
I got Lyme Disease 12 years ago when I was pregnant with William during the spring of 2000 as I cleaned the yard of the new house we had just bought out by Lake Perry. I chalked the resulting aches, pains, nausea and fatigue up to pregnancy morning sickness. My health which had always been extraordinarily good began it's slow decline. William was born seemingly healthy but he continued to get doses of Lyme through breast feeding and suddenly began to fail to thrive when he was 8 months old. We didn't know at the time why my breast milk was suddenly not good for him, but it wasn't. Although I wanted him breastfed, I followed my gut feeling and stopped and he recovered quickly on formula.
Around this time, I ended up with chronic hormonal issues, multiple fallopian tube infections, and ear infections. I was often battling some thing or another. I ended up in the ER for my tubes one night as they were about to burst with infection. I was told I wouldn't likely have any more kids from the damage done to my tubes and scar tissue from countless infections. We did nothing to stop a pregnancy and I went almost 4 years and got pregnant with Tom.
During my pregnancy with Tom, my symptoms flared and ear infections were every 3 weeks or so. A specialist said if I didn't get surgery I'd die from a brain infection as bacteria had whittled my ear bones away and were halfway through the skull bone behind my left ear. However, it couldn't be done while pregnant and I had 7 months left to go. So, when Tom was just weeks old, in 2004, I had a mastoidectomy and tympanoplasty to correct my ear problems. (removed most of the bone in my skull behind my ear, installed titanium ear bones and made a skin graft ear drum with skin from behind my ear.) So, no more ear infections!
In between these various problems, we lived a normal life and I was still much healthier than I am now. We didn't know the cause of all of this was Lyme and co-infections.
As far as Tom goes, soon after his birth, we discovered he was struggling with low T cell problems and was battling pneumonia and failure to thrive. His immune system was weak. He had a hole in his heart that typically would heal as a child grew, but his hole was enlarging and the docs were scheduling surgery for him. Unbeknownst to us, both he and Willy were born with Lyme and company and it was causing Thomas to sleep all day long and all night from birth. I had to wake him to nurse him because he didn't demand to feed. At 10 months old, when I didn't think he would live to age 1, we fed him an immune system support supplement and it not only turned around his T cell count but also eliminated a need for open heart surgery because his hole in his heart which was steadily getting worse suddenly spontaneously healed.
Fast forward to 2006. Jim suddenly has heart problems that are perplexing because he passes stress tests and echos, but it is affecting him daily. He misses 6 weeks of work for crushing fatigue, brain fog and chest pains. After 9 months of doctors and frustration, he finally gets a Lyme diagnosis. He responds well to treatment and a few months after he was returning to health I asked my doc about myself and we test me and all the kids. I wasn't surprised I had it but I had no idea about the kids. They all were positive. Lyme affects everyone differently. Hannah had chronic headaches, Jacob's legs hurt like growing pains but it didn't stop and Willy was having memory problems and learning delays. We began 1-2 years of extensive treatment. Jim even lost the tip of his right index finger to this insidious disease infecting his bone. We all responded well to the treatment, but it wouldn't take much stress and I'd be on the decline again and again.
For the past 6 years I've had good and bad times, but my bad days are worse and worse and my good stretches are shorter and shorter. We have tried countless treatments and there have been successes here and there, but all of them seem temporary.
In the past year I've gotten so sick we have altered our lives in many ways to compensate. We have spent multiple tens of thousands of dollars on treatments. Since many Lyme treatments often are not covered by insurance or expensive even when they are covered, we have struggled financially to keep our heads above the water. God has provided just what we need when we need it! We have experienced this in so many ways.
I am to the point now of needing more than just antibiotics. My organs and body are shot from treatments and I need to build up and support lost functions to have any chance of beating this. I chose to seek treatment in Oregon because I have family here and Oregon is more progressive. Laws allow natural and alternative treatments to exist alongside western medicine. When you are told by western medicine there is no cure for adrenal fatigue (because there is no pill for it/nobody to get rich off of it), then you are forced to seek someone who CAN help. Between my two doctors, in Kansas and Oregon, I'm hoping for a more balanced approach to treating this disease. It's become desperate and urgent that something happen soon. I've spent more time in bed than not this summer- sometimes up to 18 hours in bed and only 6 hours up for days on end. My memory is gone, speech/word finding center is not normal, body is in extreme pain, blood work is out of whack, and I have felt like I am more dead than alive for months. I'm hoping for a cure, or at the very least to tip the balance between my immune system strength and these bugs.
However, I believe there are reasons for everything and I am content and happy despite this situation and even if I never get well. Being sick has changed me in more positive ways than it has hurt me. It isn't what I planned for my life, but I have been more blessed by things I haven't planned than things I have planned. God has this too, I am sure of it. He works mysteriously at times through less than ideal situations (from our perspectives) and I'm happy to be used as a tool for His work if that is what He wants.
Now that the big one is out of the way, I can update as news or prayer requests arise! Thank you everyone for your concern and care for our family. I appreciate the prayers more than you know.
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