It's finally happened. Sick for years, many doctors, specialists, sets of lab work, x-rays, ultrasounds, exams...and someone has finally decided that they have me figured out.
This week a neurologist attributed all of my problems to low-grade chronic depression. When I reminded her of all my physical symptoms I was told that depression could be very harmful. What about my eyes, I asked. Does depression cause star bursting? No, she admitted. My diagnosis was then altered to low-grade chronic depression with migraines.
When I told her that I've never had a migraine before, she didn't care. Okay, I said, but my eyes have been star bursting for months now - can a painless migraine cause symptoms to linger for so long after the event? No, she said. I must have a low-grade constant migraine. When I refused her industrial-strength migraine prevention medication she announced that it wasn't worth making a follow-up appointment.
To be fair, I did feel a little depressed after the appointment. It's gone now, but lasted a day or so.
This led me to consider (once again) the danger of mis-diagnosis.
I was in bed last night, unable to sleep on account of some aching in my leg and arm, when I put some things together. A week or so before I stopped going to work I had an appointment with a GI who diagnosed me with ibs and gave me a list of foods to eat and a list of foods to avoid. The recommended foods were horrible - white bread, white flour, potatoes, white rice, no fresh vegetables, little fresh fruit, etc.
I was disgusted with the foods I had been instructed to eat, but having had a horribly upset stomach for the last 9 months I decided to try the diet and see if I could get myself balanced. My plan was to re-introduce healthy foods once I had things under control.
It didn't happen. I fell apart instead. I can't tell you if my intestinal health improved because I lost the ability to do much of anything - including think. All I know is that I felt horrible.
Instead of having fresh fruit and vegetables, whole grain breads, nuts, dark chocolate, and vegan ‘meats’, I landed in a diet of frozen low-fat pizzas, protein shakes, and rice crackers. Instead of packing fresh fruit and trail mixes for workday snacks I started stopping at the convenience store and buying croissants instead.
Thinking in bed last night, the foods I was told to eat for my ibs diagnosis are the foods to specifically avoid for Lyme. I was very run down and weak, and then started feeding the bacteria (and parasites?) the diet of their dreams. I fed them gluten and sugar while depriving myself of immune-boosting foods.
By mid-February I was too run down to go to work, and took two weeks off to catch up. When I returned to the city I had an accident that resulted in a concussion. Now my system was toast. I've been slipping since then - at first rapidly, but now I have a slower progression of symptoms.
I'm not on medication for depression or migraines. Instead, I've added turmeric and resveratrol to my daily supplement mix. Take that, neuro-lady!
Friday, July 20, 2012
Monday, July 9, 2012
First Post
Goodbye little blood cells. Have a good journey.
I have never been to California, but I (and my family) have been spending a lot of time and money arranging the trip for my blood.
I live in Southern Ontario, and I have Lyme Disease. The latest I might have caught it was in 2000, but it is possible that I contracted it in the years before.
In 2000 I became very sick, and was diagnosed with mononucleosis. At the time it was a strange fit, as neither my boyfriend nor any of my friends had the disease. It became stranger when my family doctor told me that it was the worst case of mono she had ever seen.
I routinely had to dash - be dashed - to the emergency department at the local hospital. I remember the car ride there being unbearable on account of the jiggles it produced in my hugely swollen internal systems.
On one visit a team of interns was marched to my bedside and told that I was the worst mono case they were likely to see so they should take careful notes. They also took turns feeling my enormous lymph nodes. I've always been on the thin side, but the swollen nodes had given me the appearance of having three chins.
I've recently learned that at that time I had a lot of Lyme symptoms that were overlooked.
I got better from my mono a lot more rapidly than the doctor expected. I developed bronchitis, was put on antibiotics, and then suddenly was able to walk around again. While acutely ill I was in bed all the time, but was conscious for a lot of it. I had horrible night sweats.
Since that time I haven't been myself. The lymph nodes in my neck and chin swell up frequently, and I get sick a lot. I've been to emergency rooms, doctor appointments, and specialist appointments many times, each with no resolution or explanation as to the cause of my symptoms.
On many occasions the doctors have simply told me to go home.
When I get sick it tends to escalate before it gets better. I catch a cold, but it turns to bronchitis before it goes away. Things like that. It also takes me a long time to recover my energy and get rid of nagging symptoms after being mostly better. In the last few years my allotted sick days at work have typically been used up by April or May.
Over the years I have come up with adaptive strategies to cope with my plethora of issues. Things tend to fall apart on the subway to and from work when it is very busy. It is not uncommon for me to break out in cold drenching sweats, blackout, shake, or sit on the floor on any given day or journey. Through all of this I look fine, so nobody knows. Some may think I'm odd, but oh well.
Here is my mental checklist for boarding a subway car:
- I must have water on hand
- I must have food on hand (almonds, PowerBars, and dried fruit work well)
- I must be able to lean on the doorway once inside (Yes. I know. It's bad manners. Passing out and delaying the entire line is also bad manners, and when I'm leaning on the door I can make quick exits from the train and have my episode on the platform instead on on the train, thereby averting a system delay.)
- I must be able to exit the train quickly in event of illness
I haven't been able to work since mid-February. This year I've had a cascade of symptoms, and it simply isn't safe for me to go to work anymore. In fact, I can't even cross the street by myself. Normal things like grocery shopping, socializing, and even booking medical appointments are beyond me.
I have not been diagnosed with Lyme Disease in Ontario. My Ontario doctor has been trying very hard to help me and after months of normal test results she suggested that we test for Lyme. At the time I thought that it was silly.
My Ontario Lyme test (completed spring 2012) was negative.
After the lab test I went home and Googled the disease. Everything about it was me. My Dad remembered that I'd had a strange ring rash on my arm as a teenager, and that the ring (a bulls-eye pattern with internal clearing) had grown to be about 4 inches in diameter. This is a classic Lyme symptom, but at the time we didn't know it, and blamed a spider for the unsightly mark.
I sent blood samples to IgeneX, the top Lyme lab in the world, and two weeks later had a positive result. I've just sent a second sample set to IgeneX to analyze for co-infections.
Here are a list of symptoms I've had in 2012. I've had may of them for far longer.
- Head pressure, headaches, joint pain
- Bruising, sore feet, sore fingers
- Sore wrists, sore ribs, a back so sore that I don't know how to describe it. I've had dental work done without freezing, and my back is worse
- Dry cough, shortness of breath, pounding heart
- Racing heart (between 60 and 150 beats per minute at rest)
- Anxiety, nausea, visual blurring
- Peripheral ghosted vision, unbelievable sound amplification in one ear
- Ringing ears, painful ears, trembling
- Whole-body shaking, vertigo, upper body spasms
- Sore teeth and gums, tingling lips, a numb toe
- Visual confusion, light sensitivity, trouble recalling words when I speak,
- and an inability to read blocks of text. Depending on the font and spacing there are times I can't read any text accurately.
Despite all of these exciting symptoms, my principle emotion is flat. I'm just so tired.
I'm also excited to be on the right path for the first time in 12 years. I will be crossing the border and going to the United States to see a Lyme specialist and receive treatment as soon as I can get an appointment.
I don't have any treatment options in Canada, where late-stage Lyme is not recognized, and the testing standard is archaic. US test results for Lyme are not accepted here, and doctors who treat chronic Lyme face severe professional repercussions. In Ontario there are no Lyme doctors left.
I have never been to California, but I (and my family) have been spending a lot of time and money arranging the trip for my blood.
I live in Southern Ontario, and I have Lyme Disease. The latest I might have caught it was in 2000, but it is possible that I contracted it in the years before.
In 2000 I became very sick, and was diagnosed with mononucleosis. At the time it was a strange fit, as neither my boyfriend nor any of my friends had the disease. It became stranger when my family doctor told me that it was the worst case of mono she had ever seen.
I routinely had to dash - be dashed - to the emergency department at the local hospital. I remember the car ride there being unbearable on account of the jiggles it produced in my hugely swollen internal systems.
On one visit a team of interns was marched to my bedside and told that I was the worst mono case they were likely to see so they should take careful notes. They also took turns feeling my enormous lymph nodes. I've always been on the thin side, but the swollen nodes had given me the appearance of having three chins.
I've recently learned that at that time I had a lot of Lyme symptoms that were overlooked.
I got better from my mono a lot more rapidly than the doctor expected. I developed bronchitis, was put on antibiotics, and then suddenly was able to walk around again. While acutely ill I was in bed all the time, but was conscious for a lot of it. I had horrible night sweats.
Since that time I haven't been myself. The lymph nodes in my neck and chin swell up frequently, and I get sick a lot. I've been to emergency rooms, doctor appointments, and specialist appointments many times, each with no resolution or explanation as to the cause of my symptoms.
On many occasions the doctors have simply told me to go home.
When I get sick it tends to escalate before it gets better. I catch a cold, but it turns to bronchitis before it goes away. Things like that. It also takes me a long time to recover my energy and get rid of nagging symptoms after being mostly better. In the last few years my allotted sick days at work have typically been used up by April or May.
Over the years I have come up with adaptive strategies to cope with my plethora of issues. Things tend to fall apart on the subway to and from work when it is very busy. It is not uncommon for me to break out in cold drenching sweats, blackout, shake, or sit on the floor on any given day or journey. Through all of this I look fine, so nobody knows. Some may think I'm odd, but oh well.
Here is my mental checklist for boarding a subway car:
- I must have water on hand
- I must have food on hand (almonds, PowerBars, and dried fruit work well)
- I must be able to lean on the doorway once inside (Yes. I know. It's bad manners. Passing out and delaying the entire line is also bad manners, and when I'm leaning on the door I can make quick exits from the train and have my episode on the platform instead on on the train, thereby averting a system delay.)
- I must be able to exit the train quickly in event of illness
I haven't been able to work since mid-February. This year I've had a cascade of symptoms, and it simply isn't safe for me to go to work anymore. In fact, I can't even cross the street by myself. Normal things like grocery shopping, socializing, and even booking medical appointments are beyond me.
I have not been diagnosed with Lyme Disease in Ontario. My Ontario doctor has been trying very hard to help me and after months of normal test results she suggested that we test for Lyme. At the time I thought that it was silly.
My Ontario Lyme test (completed spring 2012) was negative.
After the lab test I went home and Googled the disease. Everything about it was me. My Dad remembered that I'd had a strange ring rash on my arm as a teenager, and that the ring (a bulls-eye pattern with internal clearing) had grown to be about 4 inches in diameter. This is a classic Lyme symptom, but at the time we didn't know it, and blamed a spider for the unsightly mark.
I sent blood samples to IgeneX, the top Lyme lab in the world, and two weeks later had a positive result. I've just sent a second sample set to IgeneX to analyze for co-infections.
Here are a list of symptoms I've had in 2012. I've had may of them for far longer.
- Head pressure, headaches, joint pain
- Bruising, sore feet, sore fingers
- Sore wrists, sore ribs, a back so sore that I don't know how to describe it. I've had dental work done without freezing, and my back is worse
- Dry cough, shortness of breath, pounding heart
- Racing heart (between 60 and 150 beats per minute at rest)
- Anxiety, nausea, visual blurring
- Peripheral ghosted vision, unbelievable sound amplification in one ear
- Ringing ears, painful ears, trembling
- Whole-body shaking, vertigo, upper body spasms
- Sore teeth and gums, tingling lips, a numb toe
- Visual confusion, light sensitivity, trouble recalling words when I speak,
- and an inability to read blocks of text. Depending on the font and spacing there are times I can't read any text accurately.
Despite all of these exciting symptoms, my principle emotion is flat. I'm just so tired.
I'm also excited to be on the right path for the first time in 12 years. I will be crossing the border and going to the United States to see a Lyme specialist and receive treatment as soon as I can get an appointment.
I don't have any treatment options in Canada, where late-stage Lyme is not recognized, and the testing standard is archaic. US test results for Lyme are not accepted here, and doctors who treat chronic Lyme face severe professional repercussions. In Ontario there are no Lyme doctors left.
Subscribe to:
Comments (Atom)