What in the world had happened? Why were so many things wrong with me? I had Lyme disease that went untreated for many years. I also had co-infections (often when people are bit by a bug infected with Lyme disease, that bug is also carrying other infections) that I may have had for just as long. Who knows? Maybe I had been bit multiple times? Whatever the case, my immune system was worn out from trying to fight off the Lyme disease and the co-infections. It was so depleted, it was unable to fight off the viruses that I'm sure my body in the past had sufficient antibodies present to keep in check. A tapeworm decided I would make a good host because of my barely functioning immune system. I started developing nutrient deficiencies and food allergies. All of this happened because it was too much for my body to handle.
We started treatment right away. I went on antibiotics for the UTI and she started me on nutritional supplements. I took something to kill the tapeworm. She told me to cut dairy out of my diet completely - and that I would probably notice the joint pain in my hips go away (a very strange symptom of food allergies in my opinion). She gave me a symptom chart to fill out everyday, to track what was happening with my body.
Oh, and I forgot to mention - she was another doctor that did not take insurance. There is a big, strange cloud surrounding Lyme disease that scares the CDC, health insurance companies, most doctors... and many of them deny the seriousness of Lyme disease, if they are willing to even diagnose it to begin with. It's absolutely baffling to me. Maybe I'll post more on that another time. Anyway, because of this, most doctors that know much about Lyme disease don't take insurance because (I think) they can't treat the disease when their hands are tied by insurance companies who tell them what they are allowed to give to patients and how long they can treat them for. The commonly held opinion is that 1 month of antibiotics will take care of Lyme disease, and that chronic Lyme disease doesn't exist (in other words, 1 month and you're cured for good). There are many people that are living truth of the absurdity of this claim. (If you're interested in knowing more about others' opinions on this matter, there's a great documentary out called Under Our Skin and it's available on Netflix Instant Queue). But enough about that for now.
I think in the beginning I was seeing the doctor every 2-4 weeks. I started on antibiotics for the Ehrlichiosis infection. We didn't start treating the Lyme disease right away, because you have to get the co-infections out of the way before you can effectively treat the Lyme disease. We started with the Ehrlichiosis (out of our 3 choices of co-infections) because my test results were very high - the highest she had seen in a very long time. And she suspected it had been causing my headaches.
I took pills and pills and more pills. I cut dairy out of my diet and noticed a drastic improvement in my joint pain.
She sent me to a hospital in Manhattan to have a brain CT scan and a brain Spect Scan, to check to see if the Lyme disease had crossed the blood-brain barrier and entered my neurological system. Thankfully, it had not.
She retested my ANA (the test commonly used for lupus) and this time it was positive (these tests can fluctuate). For all intents and purposes, I did also have lupus. But her opinion (and I've heard this elsewhere) is that it was Lyme-induced lupus. Usually, lupus is treated first and foremost with steroids to suppress your immune system because your immune system is overactive and attacking your own body. But one of the worst things (in my own opinion) for a Lyme patient is to take steroids because your immune system is struggling to keep up as it is. You need to support it rather than suppress it (remember back in one of my earlier posts, when the first rheumatologist told me he could put me on a "safe" medicine to help me feel better? I'm pretty sure it was a steroid, and that could have severely worsened my infection). So we decided to continue treating for the co-infections and Lyme and to just ignore the lupus. I wasn't noticing any new/abnormal symptoms different than what I had already been dealing with anyway.
At some point, we tested my Ferritin level and that was low. Ferritin is basically your body's storage of iron. I started on Iron supplements.
I took probiotics to try to help my body replenish the good bacteria that were being killed by the antibiotics I took every day.
We retested levels and started seeing improvements. My co-infections were decreasing. The viruses were decreasing. My nutrient deficiencies were improving. The tapeworm was gone. My headaches were greatly diminished along with my joint pain. My energy level was better. By this point, we're somewhere around the end of 2008/beginning of 2009.
But I've skipped part of the story - of when I moved back to Florida and met my husband-to-be. Until the next time...
Wednesday, August 31, 2011
Finally some answers! (LD Post #4)
Where were we? July of 2007 in NJ
I was about ready to give up looking for answers to what was wrong with me, but by the grace of God, I decided to give one more doctor a chance (I'm sure there would have been more doctors after her at some point - but since she found the answers, she's the "last" one I went to :-)
Based off of some old notes, I'll attempt to make a list of the symptoms I had been experiencing up to that point.
I made an appointment with the doctor. She mailed me a packet of papers (10+ pages) to fill out and bring to my first appointment. It was extremely detailed, and I did my best to answer the questions accurately which can be difficult since many symptoms come and go... and the memory loss makes it difficult to remember!
I can't remember how long I waited to see her - she was usually backed up since she was the only doctor and she took as much time with each patient as was necessary. Anyway, we reviewed the papers I filled out - page by page, line by line - and she was fairly convinced I had Lyme disease just based on my symptoms. She drew many vials of blood and sent me home with a kit to do a stool test to mail to a lab. Yuck.
I returned 3 weeks later or so to go over the results. Here is what she found, what 15+ medical professionals were not able to figure out.
But I shall end this post here. I have already typed an additional 7 paragraphs expounding on the above information - and I wouldn't want to overwhelm you with too much information at one time. And the story continues...
I was about ready to give up looking for answers to what was wrong with me, but by the grace of God, I decided to give one more doctor a chance (I'm sure there would have been more doctors after her at some point - but since she found the answers, she's the "last" one I went to :-)
Based off of some old notes, I'll attempt to make a list of the symptoms I had been experiencing up to that point.
- Headaches/Migraines
- Extreme Fatigue
- Depression
- Dizziness
- Loss of Appetite
- IBS
- Muscle Pain
- Joint pain, especially bad in my hips
- Head Cloud/Brain Fog
- Inability to focus/think/concentrate
- Anger/Irritability
- Irregular Periods
- Skin problems
- Shaky/unsteady
- Weakness
- Fuzzy Vision
- Weight Gain & Loss
- Hair Loss
- TMJ
- Cold extremities/bad circulation
- Swollen eyelids
- Memory Loss
I made an appointment with the doctor. She mailed me a packet of papers (10+ pages) to fill out and bring to my first appointment. It was extremely detailed, and I did my best to answer the questions accurately which can be difficult since many symptoms come and go... and the memory loss makes it difficult to remember!
I can't remember how long I waited to see her - she was usually backed up since she was the only doctor and she took as much time with each patient as was necessary. Anyway, we reviewed the papers I filled out - page by page, line by line - and she was fairly convinced I had Lyme disease just based on my symptoms. She drew many vials of blood and sent me home with a kit to do a stool test to mail to a lab. Yuck.
I returned 3 weeks later or so to go over the results. Here is what she found, what 15+ medical professionals were not able to figure out.
- Lyme disease
- Babesia (co-infection - I'll explain that more later)
- Ehrlichiosis (another co-infection)
- Bartonella (and another co-infection)
- Low potassium level
- Low vitamin D level
- Asymptomatic urinary tract infection
- High levels of a few different viruses, including the Epstein Barr Virus - now up to 2440
- Tapeworm
- Dairy allergy
- Extremely depleted immune system - this one takes some explaining
But I shall end this post here. I have already typed an additional 7 paragraphs expounding on the above information - and I wouldn't want to overwhelm you with too much information at one time. And the story continues...
Tuesday, August 30, 2011
My Last Resort (LD Post #3)
I really had tried to consider all of the different possibilities of what was wrong with me. I spent a lot of time researching my symptoms, trying to figure out what the problem was. I considered allergies, black mold, lupus, anemia, fibromyalgia, chronic fatigue, hypoglycemia, mad cow disease, pesticide exposure... and so on. I would bring my theories to my current doctor and they would run tests to see if that was the problem. But answers kept evading me and my symptoms continued to worsen.
I had been going back to NJ fairly regularly to work in the greenhouses (the family business) during busy times. It seemed that my symptoms weren't so bad when I was up there, and so at the end of 2006 I decided to move back to NJ. I was only getting sicker and sicker in Florida with no end in sight. A favorite quote of mine is from Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." So I decided to make a change and hoped for something different.
I moved in with my sister (she might have been a big reason why I felt better in NJ - sisters are good for the body & soul). I started out by seeing a Rheumatologist in NJ, to revisit the possibility of lupus, but the blood work was negative. Then I saw another doctor (a general practitioner - GP) in NJ, highly recommended by a few people. He referred me to an infectious disease doctor. I saw him, explained my medical history and he did an exam and sent my blood away for testing. Unfortunately, he did not take any insurance so this was an expensive visit. I do also remember having my worst ever experience with a phlebotomist (the person who draws your blood). And believe me, I know a thing or two about how blood should be drawn. I had been poked and prodded and bled so many times, I knew it wasn't normal for the tech to put the needle into my arm and then wiggle it around until she hit the vein she was trying to find. Ugh.
Back to the infectious disease doctor... I saw him again to go over the results of the blood work. Honestly, I don't even remember this visit. I just know that I saw him 2 or 3 times, but he had no answers for me either.
I continued to see the GP that sent me to see the infectious disease doctor. He tested me for the Epstein-Barr Virus (similar to mono, often associated with chronic fatigue) and my levels were crazy high (that's in strictest medical terms). In all seriousness, when they test you for the virus, there is a certain number range they use. If it's below 100, it's considered a negative result. 100-120 is equivocal. Greater than 120 is considered positive. My result was 1884. Crazy high.
He started me on B12 shots. There is not a straightforward treatment for viruses, but he said B12 shots have been known to help people with chronic fatigue. I needed the shots every week so he showed me how to do it myself and wrote me a prescription for the supplies. It wasn't bad, and thankfully I've never had a fear of needles or blood or most things medical.
Again, I don't remember exactly what happened next. We went into our busy spring season at work, and that probably kept me distracted. I was popping Motrin on a regular basis so I could function. Without it, the joint pain was almost crippling.
Skipping ahead to July of 2007... I never used to hate going to the doctor, but by this point I had developed a strong distaste for it. I had spent countless hours in doctors' offices, to no avail. It felt like a waste of time. I was tired of being patronized and not listened to. And even the doctors that did listen to me had no solid answers. I reached the point of accepting the diagnosis of chronic fatigue and fibromyalgia. After fighting it for years, I was ready to accept that this was my life now. Fatigue and pain and headaches and depression were there to stay.
My paths crossed with a woman I had known most of my life. I shared a bit of the reasons why I was back in NJ with her, and she told me that she, her husband and her son all had Lyme disease and that I should see their doctor. She mentioned another family that I knew that also used this doctor. I thanked her and took the doctor's information, still undecided if it was worth another doctor visit. But let's save that story for the next post.
FYI, I don't remember many of the medical details but thanks to my handy dandy folder, I can fill many of them in. What folder is this, you ask? It's a folder I started keeping when I realized I wasn't getting any answers and I needed to start trying to figure things out myself. It has most of the blood work I've had done since that first positive ANA test, a list of the symptoms I was experiencing, along with other important medical info. It's about 2 inches thick. I spent a lot of time going over those papers, learning how to read blood tests and what all those little itemized lines were checking for specifically. I feel as though I could slide into a job in the medical field without much extra training because of all of the research I've done on my own (okay, realistically so not true). But it feels that way.
Until the next time, friends...
I had been going back to NJ fairly regularly to work in the greenhouses (the family business) during busy times. It seemed that my symptoms weren't so bad when I was up there, and so at the end of 2006 I decided to move back to NJ. I was only getting sicker and sicker in Florida with no end in sight. A favorite quote of mine is from Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." So I decided to make a change and hoped for something different.
I moved in with my sister (she might have been a big reason why I felt better in NJ - sisters are good for the body & soul). I started out by seeing a Rheumatologist in NJ, to revisit the possibility of lupus, but the blood work was negative. Then I saw another doctor (a general practitioner - GP) in NJ, highly recommended by a few people. He referred me to an infectious disease doctor. I saw him, explained my medical history and he did an exam and sent my blood away for testing. Unfortunately, he did not take any insurance so this was an expensive visit. I do also remember having my worst ever experience with a phlebotomist (the person who draws your blood). And believe me, I know a thing or two about how blood should be drawn. I had been poked and prodded and bled so many times, I knew it wasn't normal for the tech to put the needle into my arm and then wiggle it around until she hit the vein she was trying to find. Ugh.
Back to the infectious disease doctor... I saw him again to go over the results of the blood work. Honestly, I don't even remember this visit. I just know that I saw him 2 or 3 times, but he had no answers for me either.
I continued to see the GP that sent me to see the infectious disease doctor. He tested me for the Epstein-Barr Virus (similar to mono, often associated with chronic fatigue) and my levels were crazy high (that's in strictest medical terms). In all seriousness, when they test you for the virus, there is a certain number range they use. If it's below 100, it's considered a negative result. 100-120 is equivocal. Greater than 120 is considered positive. My result was 1884. Crazy high.
He started me on B12 shots. There is not a straightforward treatment for viruses, but he said B12 shots have been known to help people with chronic fatigue. I needed the shots every week so he showed me how to do it myself and wrote me a prescription for the supplies. It wasn't bad, and thankfully I've never had a fear of needles or blood or most things medical.
Again, I don't remember exactly what happened next. We went into our busy spring season at work, and that probably kept me distracted. I was popping Motrin on a regular basis so I could function. Without it, the joint pain was almost crippling.
Skipping ahead to July of 2007... I never used to hate going to the doctor, but by this point I had developed a strong distaste for it. I had spent countless hours in doctors' offices, to no avail. It felt like a waste of time. I was tired of being patronized and not listened to. And even the doctors that did listen to me had no solid answers. I reached the point of accepting the diagnosis of chronic fatigue and fibromyalgia. After fighting it for years, I was ready to accept that this was my life now. Fatigue and pain and headaches and depression were there to stay.
My paths crossed with a woman I had known most of my life. I shared a bit of the reasons why I was back in NJ with her, and she told me that she, her husband and her son all had Lyme disease and that I should see their doctor. She mentioned another family that I knew that also used this doctor. I thanked her and took the doctor's information, still undecided if it was worth another doctor visit. But let's save that story for the next post.
FYI, I don't remember many of the medical details but thanks to my handy dandy folder, I can fill many of them in. What folder is this, you ask? It's a folder I started keeping when I realized I wasn't getting any answers and I needed to start trying to figure things out myself. It has most of the blood work I've had done since that first positive ANA test, a list of the symptoms I was experiencing, along with other important medical info. It's about 2 inches thick. I spent a lot of time going over those papers, learning how to read blood tests and what all those little itemized lines were checking for specifically. I feel as though I could slide into a job in the medical field without much extra training because of all of the research I've done on my own (okay, realistically so not true). But it feels that way.
Until the next time, friends...
Monday, August 29, 2011
And the saga continues... (LD Post #2)
If you haven't read my last post yet, you might want to. Otherwise you'll be a little lost...
So my daily migraines had started, and this is where I remember a drastic change to my quality of life. I'd always been a very involved and active person. I was working full time, taking college classes at night, playing in the church orchestra, helping out with the youth group and leading the youth band, playing in another band, in a Bible study, spending time with friends... but I gradually started paring down my schedule. I didn't have the energy to participate in everything, so I had to start picking and choosing. When the migraines started, I really cut out my involvement on a number of things because I felt as though I was completely unreliable. I became scared to drive, because I didn't trust myself. The headaches clouded my thinking, my eyesight was affected, my ability to focus and pay attention was drastically depleted.
I withdrew. I spent a lot of time sleeping, completely exhausted. I was still working with the family business, but my hours were very low. I remember a time when I was happy if I could put in 5 hours of work in a week. I felt like a hypochondriac, like a failure. I figured I must be doing something wrong, that if I tried harder I could do all of these things that used to be so easy but now seemed insurmountable to me. Because of course, there was nothing wrong with me. I had been checked out by multiple doctors, been on different medicines, been told it was all in my head and that I just needed to go on antidepressants (which I tried and it didn't help).
At some point, I started developing severe joint pain in my hips and legs. Some days it hurt so bad I could barely walk. I felt like an 80 year old woman when I climbed the stairs at my parents' house - one, slow painful step at a time. And my symptoms continued to worsen.
Thankfully, I would have a reprieve in my symptoms here in there. I would feel terrible for a while, and then start to feel better. I would be so hopeful that I was better, that God had finally seen fit to end my years of suffering... and I would crash again into misery. This happened countless times. I finally stopped hoping on my good days, because the discouragement when my symptoms returned in force was too painful.
"Hope deferred makes the heart sick," Proverbs 13:12a
Back to the medical side... I had an MRI done on my head to make sure there wasn't a tumor or something causing my daily migraines. There wasn't.
By now, it was apparent that there was something wrong with me (even to the doctors) but a lack of medical proof as to what was wrong. The doctors were telling me it was fibromyalgia and chronic fatigue, which are diagnosises of exclusion. There is no specific test that can diagnose either of those illnesses. It's what they tell you you have when your symptoms fit and there is no other apparent problem.
I didn't want to accept that as my diagnosis, because then there wasn't anything I could do to get rid of it or feel better. I would just have to learn how to live with the way I was feeling.
I still suspected that I might have Lyme disease, but I was starting to get the impression that doctors in Florida were not well-versed in dealing with Lyme disease. At the end of 2006, I decided to move back to New Jersey in hopes of finding a doctor that might have some answers.
Inexplicably, my symptoms also seemed to be less severe when I was up North. I didn't know if there was just something in Florida that completely disagreed with me - allergies, molds, the weather? So I moved back to NJ, in search of better health.
...to be continued...
So my daily migraines had started, and this is where I remember a drastic change to my quality of life. I'd always been a very involved and active person. I was working full time, taking college classes at night, playing in the church orchestra, helping out with the youth group and leading the youth band, playing in another band, in a Bible study, spending time with friends... but I gradually started paring down my schedule. I didn't have the energy to participate in everything, so I had to start picking and choosing. When the migraines started, I really cut out my involvement on a number of things because I felt as though I was completely unreliable. I became scared to drive, because I didn't trust myself. The headaches clouded my thinking, my eyesight was affected, my ability to focus and pay attention was drastically depleted.
I withdrew. I spent a lot of time sleeping, completely exhausted. I was still working with the family business, but my hours were very low. I remember a time when I was happy if I could put in 5 hours of work in a week. I felt like a hypochondriac, like a failure. I figured I must be doing something wrong, that if I tried harder I could do all of these things that used to be so easy but now seemed insurmountable to me. Because of course, there was nothing wrong with me. I had been checked out by multiple doctors, been on different medicines, been told it was all in my head and that I just needed to go on antidepressants (which I tried and it didn't help).
At some point, I started developing severe joint pain in my hips and legs. Some days it hurt so bad I could barely walk. I felt like an 80 year old woman when I climbed the stairs at my parents' house - one, slow painful step at a time. And my symptoms continued to worsen.
Thankfully, I would have a reprieve in my symptoms here in there. I would feel terrible for a while, and then start to feel better. I would be so hopeful that I was better, that God had finally seen fit to end my years of suffering... and I would crash again into misery. This happened countless times. I finally stopped hoping on my good days, because the discouragement when my symptoms returned in force was too painful.
"Hope deferred makes the heart sick," Proverbs 13:12a
Back to the medical side... I had an MRI done on my head to make sure there wasn't a tumor or something causing my daily migraines. There wasn't.
By now, it was apparent that there was something wrong with me (even to the doctors) but a lack of medical proof as to what was wrong. The doctors were telling me it was fibromyalgia and chronic fatigue, which are diagnosises of exclusion. There is no specific test that can diagnose either of those illnesses. It's what they tell you you have when your symptoms fit and there is no other apparent problem.
I didn't want to accept that as my diagnosis, because then there wasn't anything I could do to get rid of it or feel better. I would just have to learn how to live with the way I was feeling.
I still suspected that I might have Lyme disease, but I was starting to get the impression that doctors in Florida were not well-versed in dealing with Lyme disease. At the end of 2006, I decided to move back to New Jersey in hopes of finding a doctor that might have some answers.
Inexplicably, my symptoms also seemed to be less severe when I was up North. I didn't know if there was just something in Florida that completely disagreed with me - allergies, molds, the weather? So I moved back to NJ, in search of better health.
...to be continued...
How it all began (LD Post #1)
So when did I contract Lyme disease? I have no idea. I lived in New Jersey and spent a lot of time in upstate NY and in Massachusetts. I could have gotten it at any point. But I never noticed the "tell-tale" target shaped rash. They say 50% of people who have been infected don't notice or get the rash.
I move to Florida in the fall of 2001. September 9th, 2001 to be exact.
I had a good first year in Florida. My sister and I traveled to Holland, England, Scotland and Ireland in the summer of 2002 for an amazing whirlwind one week trip. I had a hard time keeping up with my speed-walking sister and was fairly tired, but didn't think anything of it.
When we got home, the fatigue continued... and steadily got worse. I saw a doctor and had some blood work done, and the test came back with a positive ANA. In laymen's terms, it was a good indicator that I had lupus and the doctor sent me to a rheumatologist (a specialist that treats lupus). He told me I didn't have enough symptoms of lupus to diagnosis me, but told me he could put me on medicine that might make me feel better. I was opposed to taking meds without knowing what was wrong with me, so I declined (I've found out down the road how good of a decision that was, thanks be to God!).
This is where my history gets a little bit muddled. I chalk it up to the Lyme disease and fatigue. Unfortunately, there are huge chunks of my life that I really don't recall. Lyme disease can cause memory loss. I don't know how much of my lack of memory is normal and how much is because of the Lyme disease. But I guess it doesn't matter why I can't remember.
Let's see...
- I saw an herbalist for a little while and took lots and lot of pills and supplements to see if it would help. It did for a little while, but then I seemed to crash back down into fatigue again.
- I saw another doctor for a second opinion. He said I looked perfectly healthy and maybe I should go on antidepressants.
- At some point in all of this mess, I had a doctor (or 2) test me for Lyme disease because I suspected that could be the problem, but the tests came back negative (more on that subject later).
- I saw a homeopathic doctor that was recommended to me by some friends who had been successfully treated for cancer by him. It helped... for a while. It also cost a lot of money.
- I saw another doctor at some point in there. He told me I needed to exercise more and that he could put me on antidepressants if I wanted (notice a trend here?).
- I saw another doctor, recommended by a friend who had been treated for Lyme disease. He was probably the best out of the bunch. He actually listened to me. But the test for Lyme came back negative, according to the CDC standard of testing for Lyme disease.
What's the CDC standard? It's a little complicated to explain - this link is to an article on the subject. Basically, the test checks certain bands of your DNA to see if you're infected. It has to show up in 5+ bands of your DNA to be positive. I only had it present in 2 bands of DNA. So, according to them, I wasn't infected. Yeah. Sure. Thanks guys.
But this doctor still went ahead and treated me with antibiotics - better safe than sorry, he said. He put me on a one month course. I don't even remember if I felt better or not after that.
FYI, we're probably somewhere in 2006 now. We've covered about four years.
Somewhere around that time, I started having migraines which gradually became a daily occurrence. Talk about miserable. It was hard enough to function being drastically fatigued all the time (not to mention the brain fog I was experiencing because of the Lyme) but when you add daily headaches on top of it...
But that's enough for now. I know I have a hard time reading long emails/posts before my attention starts to wander. Did I stop in time? Do I still have your attention? :-)
I move to Florida in the fall of 2001. September 9th, 2001 to be exact.
I had a good first year in Florida. My sister and I traveled to Holland, England, Scotland and Ireland in the summer of 2002 for an amazing whirlwind one week trip. I had a hard time keeping up with my speed-walking sister and was fairly tired, but didn't think anything of it.
When we got home, the fatigue continued... and steadily got worse. I saw a doctor and had some blood work done, and the test came back with a positive ANA. In laymen's terms, it was a good indicator that I had lupus and the doctor sent me to a rheumatologist (a specialist that treats lupus). He told me I didn't have enough symptoms of lupus to diagnosis me, but told me he could put me on medicine that might make me feel better. I was opposed to taking meds without knowing what was wrong with me, so I declined (I've found out down the road how good of a decision that was, thanks be to God!).
This is where my history gets a little bit muddled. I chalk it up to the Lyme disease and fatigue. Unfortunately, there are huge chunks of my life that I really don't recall. Lyme disease can cause memory loss. I don't know how much of my lack of memory is normal and how much is because of the Lyme disease. But I guess it doesn't matter why I can't remember.
Let's see...
- I saw an herbalist for a little while and took lots and lot of pills and supplements to see if it would help. It did for a little while, but then I seemed to crash back down into fatigue again.
- I saw another doctor for a second opinion. He said I looked perfectly healthy and maybe I should go on antidepressants.
- At some point in all of this mess, I had a doctor (or 2) test me for Lyme disease because I suspected that could be the problem, but the tests came back negative (more on that subject later).
- I saw a homeopathic doctor that was recommended to me by some friends who had been successfully treated for cancer by him. It helped... for a while. It also cost a lot of money.
- I saw another doctor at some point in there. He told me I needed to exercise more and that he could put me on antidepressants if I wanted (notice a trend here?).
- I saw another doctor, recommended by a friend who had been treated for Lyme disease. He was probably the best out of the bunch. He actually listened to me. But the test for Lyme came back negative, according to the CDC standard of testing for Lyme disease.
What's the CDC standard? It's a little complicated to explain - this link is to an article on the subject. Basically, the test checks certain bands of your DNA to see if you're infected. It has to show up in 5+ bands of your DNA to be positive. I only had it present in 2 bands of DNA. So, according to them, I wasn't infected. Yeah. Sure. Thanks guys.
But this doctor still went ahead and treated me with antibiotics - better safe than sorry, he said. He put me on a one month course. I don't even remember if I felt better or not after that.
FYI, we're probably somewhere in 2006 now. We've covered about four years.
Somewhere around that time, I started having migraines which gradually became a daily occurrence. Talk about miserable. It was hard enough to function being drastically fatigued all the time (not to mention the brain fog I was experiencing because of the Lyme) but when you add daily headaches on top of it...
But that's enough for now. I know I have a hard time reading long emails/posts before my attention starts to wander. Did I stop in time? Do I still have your attention? :-)
Thursday, August 25, 2011
Hungry for an Elephant (Introduction)
So my sabbatical from blogging is over (not that I took one intentionally). Things got busy at work, I fell out of the habit (do 8 blog posts constitute a habit?) and then *big entrance music* the return of Lyme disease. I kind of expected this at some point, but it's completely different to expect something and to actually deal with it.
It has been something that has touched every aspect of my life - I find it's hard to write a blog post about anything else because it is the domineering thought in my head right now, that thing that if I'm not thinking about currently, it's just below the surface and I'll be thinking about it shortly. I guess that's one of the things taking multiple medicines at different intervals throughout the day can do to you.
I have a hard time writing a blog post about Lyme disease. I've had it for at least 10 years and it has dramatically affected my life. I have written at least 3 blog posts on the subject, but I can't seem to get them right - so I've yet to post one on the subject.
Writing about my struggle with Lyme disease forces me to dig deep into the emotions that I have shoved away and ignored as I've tried to deal with a long term illness. And let me tell you, there are a lot of different emotions - some closer to the surface, others buried deeply down.
The mental image that comes to mind is drilling for oil. If you hit a highly pressurized pocket of oil, it's going to come shooting out of there and you'd better hope you have some way of bringing it under control. All these emotions that I've been burying and ignoring won't go away. The pressure will just increase over time.
Every time I attempt to write about this chapter of my life, so many different emotions and memories come gushing out. I'm the kind of writer that writes what I'm thinking. I don't think ahead or plan what I'm going to write. I just start with the topic that's on my mind and see where it takes me.I process things as I write. And therein lies my problem. It's too big a subject for me to tackle that way.
Here's to eating the elephant one bite at a time.
It has been something that has touched every aspect of my life - I find it's hard to write a blog post about anything else because it is the domineering thought in my head right now, that thing that if I'm not thinking about currently, it's just below the surface and I'll be thinking about it shortly. I guess that's one of the things taking multiple medicines at different intervals throughout the day can do to you.
I have a hard time writing a blog post about Lyme disease. I've had it for at least 10 years and it has dramatically affected my life. I have written at least 3 blog posts on the subject, but I can't seem to get them right - so I've yet to post one on the subject.
Writing about my struggle with Lyme disease forces me to dig deep into the emotions that I have shoved away and ignored as I've tried to deal with a long term illness. And let me tell you, there are a lot of different emotions - some closer to the surface, others buried deeply down.
The mental image that comes to mind is drilling for oil. If you hit a highly pressurized pocket of oil, it's going to come shooting out of there and you'd better hope you have some way of bringing it under control. All these emotions that I've been burying and ignoring won't go away. The pressure will just increase over time.
Every time I attempt to write about this chapter of my life, so many different emotions and memories come gushing out. I'm the kind of writer that writes what I'm thinking. I don't think ahead or plan what I'm going to write. I just start with the topic that's on my mind and see where it takes me.I process things as I write. And therein lies my problem. It's too big a subject for me to tackle that way.
Here's to eating the elephant one bite at a time.
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