Well of course my symptoms would go away the day before I go to see the specialist. I got most of my energy back yesterday and the headache is almost gone, I thought about cancelling but what if it comes back.
I have been so nerves all day just thinking about the appointment, I went through what I was going to say, all the dates everything started and symptoms. I sat ready for the doctor and found myself sweating. I was scared he was going to laugh at me the way my doctor did, well he didn't laugh but I bet he did when he left the room. I again went through everything in my head while waiting and at the same time wanted him to hurry like I would forget what I had rehearsed.
He walked in, he was very tall I mean vary tall. He looked like a basketball player, middle aged, shook his hand and he asked me what brought me here. Everything I had rehearsed, everything I would say seemed to fall out of my head and I tripped over words. Wow, I was not making a good first impression. I took a deep breath and said "okay, I'll just start from the beginning." While I was talking he took notes and nodded, I started to relax but still tripped over words trying to get my point across before I was laughed out of his office.
After I was done he went over my symptoms again, did a basic overview taking my temperature, looking in my ears, eyes, mouth, checking my heartbeat and so on. After he was done he said that based on my symptoms it looks like I could have the Borrelia vires but not Lymes. A sister of Lymes that is more Northwest, WA, ID, MT, OR. Based on the fact that I had a temperature of 101 and the symptoms that I talked about coming and going this was probably it. He actually see's it pretty often from hunters in the fall but have seen cases this summer from eastern WA camping and hiking.
YES! I'm getting somewhere, he said that I don't have chronic fatigue and went on to tell me why but I didn't understand 1/2 he said. So I was given more blood work to complete tomorrow. A peripheral smear to check for spirocketes, what ever that is, to make sure it's not Lymes and this test actually works, there will be no false negative. I also received a RX to get started on that should make me feel better in 7 days!
He didn't laugh, he listened, he treated by symptoms, and he diagnosed. Finally!
Tuesday, August 12, 2008
Monday, August 11, 2008
Second Guessing
I think second guessing is a normal response in life. After a weekend mostly symptom free I started to think well maybe the doctor is right about the chronic fatigue syndrome. You see I did a little reading about it because Lyme disease can be confused for chronic fatigue. After reading up they sound very close in the symptom category. So maybe my doctor was on to something with the chronic fatigue, the depression was way off.
I have a dull aching head and slight pressure behind my eyes and neck pain but that's it, I had nausea on Saturday morning and it went away with nausea meds. So the real question is do I go to the specialist or do I ride it out.
I have a dull aching head and slight pressure behind my eyes and neck pain but that's it, I had nausea on Saturday morning and it went away with nausea meds. So the real question is do I go to the specialist or do I ride it out.
Friday, August 8, 2008
Blood Work
August 8 - I went into see the doctor at 11:30am. I was excited to find out but also nerves to hear "your blood work is normal." Because I know that what I'm feeling is not normal.
Well, I was right. All my blood work came back normal as did my Lyme test. "Okay," the doctor said, "lets go through all your symptoms again." So I started listing them, they have grown a bit since Monday. Knee pain, abdominal cramps, pain in my elbow and shortness of breath when I work out or take the stairs and a few others you don't want to hear about. I am sore after I work out which just never happened to me.
So after listing all the symptoms I start to feel like I'm crazy or he is going think I'm crazy. I can tell he has lost interest and is trying to come up with something to tell me to ease my mind. So he pulls out a breathing machine and wants me to blow into it to see if I have Asthma. WTF! Seriously!
So I pass that test and am told everything is "normal" but that maybe I'm developing Asthma. So how do you explain the other symptoms? Well depression of course. And the being tired all the time? Chronic fatigue syndrome. So I went in to find out the results of my blood work and hopefully be forwarded to a specialist and I came out being a depressed, chronic fatigued, Asthma crazy person. Wow, nice job. I think you diagnosed me to a tee. Then he said he would write me a prescription for an inhaler and depression meds. Yes, I think that will help. Thank you so much dear doctor.
So what did I do. Walked out with a copy of my blood work. I needed some time to cool off, I didn't want him to think I was to crazy.
So I made the call, it was hard for me but I asked for a second opinion and a referral to see an infectious disease specialist. So Tuesday is the day I see a specialist. I'll try to not to pass out hiking this weekend since I don't have my inhaler.
Well, I was right. All my blood work came back normal as did my Lyme test. "Okay," the doctor said, "lets go through all your symptoms again." So I started listing them, they have grown a bit since Monday. Knee pain, abdominal cramps, pain in my elbow and shortness of breath when I work out or take the stairs and a few others you don't want to hear about. I am sore after I work out which just never happened to me.
So after listing all the symptoms I start to feel like I'm crazy or he is going think I'm crazy. I can tell he has lost interest and is trying to come up with something to tell me to ease my mind. So he pulls out a breathing machine and wants me to blow into it to see if I have Asthma. WTF! Seriously!
So I pass that test and am told everything is "normal" but that maybe I'm developing Asthma. So how do you explain the other symptoms? Well depression of course. And the being tired all the time? Chronic fatigue syndrome. So I went in to find out the results of my blood work and hopefully be forwarded to a specialist and I came out being a depressed, chronic fatigued, Asthma crazy person. Wow, nice job. I think you diagnosed me to a tee. Then he said he would write me a prescription for an inhaler and depression meds. Yes, I think that will help. Thank you so much dear doctor.
So what did I do. Walked out with a copy of my blood work. I needed some time to cool off, I didn't want him to think I was to crazy.
So I made the call, it was hard for me but I asked for a second opinion and a referral to see an infectious disease specialist. So Tuesday is the day I see a specialist. I'll try to not to pass out hiking this weekend since I don't have my inhaler.
CT Scan
August 6- Well the urgent care center called to let me know my CT scan was normal. Not that I had a doubt. I did wonder the first week that I had this blasted pain but then the pain just seemed "normal." It was just normal to wake up with the pain and go to sleep with more pain after the long day.
The nausea has pretty much gone away for now, I'm left with a headache, achy eyes and I'm so tired all the time. I'm glad that the CT scan was normal but when will I feel "normal" again?
The nausea has pretty much gone away for now, I'm left with a headache, achy eyes and I'm so tired all the time. I'm glad that the CT scan was normal but when will I feel "normal" again?
Tuesday, August 5, 2008
Symptoms
Most people go to the doctor as little as possible. I am one of those people. I am a pretty healthy 28 year old female, I love hiking, biking and being outside. Living in the pacific northwest where it rains 10 months out of the year you just learn to work with the weather and prepare for anything.
In June 2008 I went to Montana with Joe and Selena. This was to be our first real family vacation. My sister in law was getting married so instead of fly we choose to take a road trip, the drive from Seattle to Montana is not that far we figured.
On June 23rd I noticed a bite mark on my right arm, this was two days into our vacation and we were camping in Clinton, MT. I didn't think to much of it since we were camping and I had a few mosquito bites already. On June 24th the bite mark started to turn into a round rash all around the bite area. It was about 3" in diameter and though it didn't really itch just the look of it made me think spiders crawling on me at night in my sleeping bag and this made me itchy all over. I really didn't give the bite much more thought since it went away two days later.
On July 5th we had friends staying at our house for the holiday weekend. That morning we went down to the Tacoma waterfront to walk. This was the first morning I felt a wave of nausea. By the afternoon I was exhausted, I laid on the couch for two hours unable to move. My head started pounding, I was dizzy, the nausea was so bad, my eyes ached and any light was painful and I was tired.
On July 7th I went to the doctor thinking it was an ear infection. It wasn't. The doctor said it must be a migraine and sent me off with a prescription for pain meds and nausea meds. Neither worked, the pain and nausea lasted until July 11th. The nausea stopped followed by the headache and the eye pain was last to go.
On July 23rd, a week and a half after the last illness it started all over again. The nausea and dizziness started in and I actually threw up. The next day the headache started and the eye pain kicked in, I didn't eat for the next three days. The nausea would come and go, the headache was less painful but there was a fullness and stabbing pain in the front of my head. The eye pain was like a constant pressure, it hurt to move my eyes, the lights hurt my eyes.
On July 27th I could hardly move, just moving made me sick. I went to urgent care and was again given nausea meds to take and a referral to set up a CT Scan.
By August 1st I was so tired of everything, feeling sick, missing out on being with Selena and Joe. I was so exhausted each night that I just wanted to go to bed. I went online and typed in my symptoms. I was not trying to self diagnose, I would rather leave it to the professionals but I at least needed to narrow it down and this illness was running my life.
Many headache's came up in my search at Wed MD but there was one disease that I wasn't expecting. Lyme. I don't have Lyme, where would I have gotten that, I haven't been out hiking for quite a while and not in tall grasses. I knew very little about Lyme, I knew that you can get it in the NW but other than that I knew nothing. The link I clicked on took me to the CDC Centers for Disease Control and Prevention website where I looked at the symptoms and it matched what I had. But again, where would I have picked up Lyme? And that is when I remembered the bite in MT.
The first sign of infection is usually a circular rash called erythema migrans or EM. This rash occurs in approximately 70-80% of infected persons and begins at the site of a tick bite after a delay of 3-30 days. The center of the rash may clear as it enlarges, resulting in a bull's-eye appearance. It may be warm but is not usually painful. Patients also experience symptoms of fatigue, chills, fever, nausea, eye pain, headache, and muscle and joint aches, and swollen lymph nodes. In some cases, these may be the only symptoms of infection.
So again I was never trying to self diagnose but now I could tell my doctor about the bite I received in MT as I never told him before. Okay, maybe we are getting somewhere.
On August 2nd I went in for my CT scan. By this time the pain was now in my neck, my muscles were sore for no real reason, the pain in my eyes remained so did the headache and nausea. Did I have Lyme?
On August 4th I went back in to see my doctor. When I told him about the bite mark and maybe Lyme he said "Lyme disease is more of an east coast thing." EAST COAST?? Then why the heck do we hear about it on the west cost?? Again, before my appointment I did some research at the Lyme Disease Foundation Website. (see below)
Through the years, Lyme disease in Montana has been an open-and-shut case. To Montanans who thought they had it, the response from health officials has been the same: You couldn't.Montana has the wrong kind of ticks. It's deer ticks that carry Lyme disease, and Montana's ticks are Rocky Mountain wood ticks.
"We've told people, 'We don't know what you have, but we know what you don't have, and that's Lyme disease,' " said state epidemiologist Todd Damrow.But Damrow and others were troubled by a nagging repetition of a similar set of symptoms reported by patients and by physicians: fever, severe fatigue and a bull's-eye rash at the site of a tick bite on the patient. A couple of years ago, Damrow got a photograph of a perfect bull's-eye rash from a public health worker in Montana. The rash was on a patient who had not left the state. At the same time, the Centers for Disease Control and Prevention were investigating a connection between Lone Star ticks in the Southeast and similar symptoms. They found a Lyme disease-like agent in the tick."So I thought, 'Well, gosh, maybe I should not be so cavalier when we get these reports,' " Damrow said.The result was a study that began last tick season. The hypothesis is this: Could Montana have a similar phenomenon in its ticks, a Lyme disease-like agent that has adapted to the wood tick and is causing this similar illness?"We know we don't have Lyme disease, because we don't have the right kind of tick," said Pam Goldberg, an infectious disease specialist at the Missoula City-County Health Department. "But we might have a cousin to it."The study is a collaboration among local health departments around Montana, the state Department of Public Health and Human Services and the federal Rocky Mountain Laboratories in Hamilton."We're real excited about it," Damrow said. "Doctors are concurring with this, and they think we're right on line."With western Montana's warmer weather in the past couple of weeks, ticks have appeared. Around Missoula, they've been picked up on Waterworks Hill, Mount Sentinel, Mount Jumbo and Blue Mountain. Hikers and bikers who extract blood-sucking ticks should think twice before crushing or flushing them.
Missoula is 10 miles west of Clinton, MT where we camped.
So where am I at currently. I demanded a Lyme test because the doctor was not going to give it to me. They also did more work since my doctor thinks it's my Thyroid at this time. I go in on August 8th to get my first round of blood work back and the CT review. The Lyme test won't be back until early next week. (see below for testing)
Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.
CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.
1) The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.
2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
So you know, there is no way to really be sure since the tests aren't always accurate. So then what? Well that's what I'm about to find out.
In June 2008 I went to Montana with Joe and Selena. This was to be our first real family vacation. My sister in law was getting married so instead of fly we choose to take a road trip, the drive from Seattle to Montana is not that far we figured.
On June 23rd I noticed a bite mark on my right arm, this was two days into our vacation and we were camping in Clinton, MT. I didn't think to much of it since we were camping and I had a few mosquito bites already. On June 24th the bite mark started to turn into a round rash all around the bite area. It was about 3" in diameter and though it didn't really itch just the look of it made me think spiders crawling on me at night in my sleeping bag and this made me itchy all over. I really didn't give the bite much more thought since it went away two days later.
On July 5th we had friends staying at our house for the holiday weekend. That morning we went down to the Tacoma waterfront to walk. This was the first morning I felt a wave of nausea. By the afternoon I was exhausted, I laid on the couch for two hours unable to move. My head started pounding, I was dizzy, the nausea was so bad, my eyes ached and any light was painful and I was tired.
On July 7th I went to the doctor thinking it was an ear infection. It wasn't. The doctor said it must be a migraine and sent me off with a prescription for pain meds and nausea meds. Neither worked, the pain and nausea lasted until July 11th. The nausea stopped followed by the headache and the eye pain was last to go.
On July 23rd, a week and a half after the last illness it started all over again. The nausea and dizziness started in and I actually threw up. The next day the headache started and the eye pain kicked in, I didn't eat for the next three days. The nausea would come and go, the headache was less painful but there was a fullness and stabbing pain in the front of my head. The eye pain was like a constant pressure, it hurt to move my eyes, the lights hurt my eyes.
On July 27th I could hardly move, just moving made me sick. I went to urgent care and was again given nausea meds to take and a referral to set up a CT Scan.
By August 1st I was so tired of everything, feeling sick, missing out on being with Selena and Joe. I was so exhausted each night that I just wanted to go to bed. I went online and typed in my symptoms. I was not trying to self diagnose, I would rather leave it to the professionals but I at least needed to narrow it down and this illness was running my life.
Many headache's came up in my search at Wed MD but there was one disease that I wasn't expecting. Lyme. I don't have Lyme, where would I have gotten that, I haven't been out hiking for quite a while and not in tall grasses. I knew very little about Lyme, I knew that you can get it in the NW but other than that I knew nothing. The link I clicked on took me to the CDC Centers for Disease Control and Prevention website where I looked at the symptoms and it matched what I had. But again, where would I have picked up Lyme? And that is when I remembered the bite in MT.
The first sign of infection is usually a circular rash called erythema migrans or EM. This rash occurs in approximately 70-80% of infected persons and begins at the site of a tick bite after a delay of 3-30 days. The center of the rash may clear as it enlarges, resulting in a bull's-eye appearance. It may be warm but is not usually painful. Patients also experience symptoms of fatigue, chills, fever, nausea, eye pain, headache, and muscle and joint aches, and swollen lymph nodes. In some cases, these may be the only symptoms of infection.
So again I was never trying to self diagnose but now I could tell my doctor about the bite I received in MT as I never told him before. Okay, maybe we are getting somewhere.
On August 2nd I went in for my CT scan. By this time the pain was now in my neck, my muscles were sore for no real reason, the pain in my eyes remained so did the headache and nausea. Did I have Lyme?
On August 4th I went back in to see my doctor. When I told him about the bite mark and maybe Lyme he said "Lyme disease is more of an east coast thing." EAST COAST?? Then why the heck do we hear about it on the west cost?? Again, before my appointment I did some research at the Lyme Disease Foundation Website. (see below)
Through the years, Lyme disease in Montana has been an open-and-shut case. To Montanans who thought they had it, the response from health officials has been the same: You couldn't.Montana has the wrong kind of ticks. It's deer ticks that carry Lyme disease, and Montana's ticks are Rocky Mountain wood ticks.
"We've told people, 'We don't know what you have, but we know what you don't have, and that's Lyme disease,' " said state epidemiologist Todd Damrow.But Damrow and others were troubled by a nagging repetition of a similar set of symptoms reported by patients and by physicians: fever, severe fatigue and a bull's-eye rash at the site of a tick bite on the patient. A couple of years ago, Damrow got a photograph of a perfect bull's-eye rash from a public health worker in Montana. The rash was on a patient who had not left the state. At the same time, the Centers for Disease Control and Prevention were investigating a connection between Lone Star ticks in the Southeast and similar symptoms. They found a Lyme disease-like agent in the tick."So I thought, 'Well, gosh, maybe I should not be so cavalier when we get these reports,' " Damrow said.The result was a study that began last tick season. The hypothesis is this: Could Montana have a similar phenomenon in its ticks, a Lyme disease-like agent that has adapted to the wood tick and is causing this similar illness?"We know we don't have Lyme disease, because we don't have the right kind of tick," said Pam Goldberg, an infectious disease specialist at the Missoula City-County Health Department. "But we might have a cousin to it."The study is a collaboration among local health departments around Montana, the state Department of Public Health and Human Services and the federal Rocky Mountain Laboratories in Hamilton."We're real excited about it," Damrow said. "Doctors are concurring with this, and they think we're right on line."With western Montana's warmer weather in the past couple of weeks, ticks have appeared. Around Missoula, they've been picked up on Waterworks Hill, Mount Sentinel, Mount Jumbo and Blue Mountain. Hikers and bikers who extract blood-sucking ticks should think twice before crushing or flushing them.
Missoula is 10 miles west of Clinton, MT where we camped.
So where am I at currently. I demanded a Lyme test because the doctor was not going to give it to me. They also did more work since my doctor thinks it's my Thyroid at this time. I go in on August 8th to get my first round of blood work back and the CT review. The Lyme test won't be back until early next week. (see below for testing)
Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.
CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.
1) The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.
2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
So you know, there is no way to really be sure since the tests aren't always accurate. So then what? Well that's what I'm about to find out.
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