Help me beat Chronic Lyme Disease
Donation protected
My name is Jacob (Pictured in middle with my two brothers). I'm 24 and have had the clinical diagnosis of Chronic Lyme Disease.
Here briefly is my story of diagnosis.
The past year has been hell for me. I've had to quit school, I can't work and every day I deal with flu like symptoms. I was on the drug Cymbalta but I was having a very hard time with the side effects on the drug and it was getting worse. But it was the only drug that helped with my chronic fatigue, add, and depression. Then I started to have less and less energy again to do the things that I enjoyed, such as wrestling, football, reading, going to college, gardening, and weight lifting. I began having terrible brain fog, and my dyslexia symptoms were getting worse, where I couldn't even read which used to be my past time. I was working on my bachelor’s degree in environmental science until my symptoms left me unable to continue school, forcing me to drop out. Not getting any answers from different doctors, I turned to a naturopathic doctor. I told her all my symptoms, and I was surprised she wanted to test me for lyme disease. I always thought with lyme you get a rash, go to the doctor and get antibiotics. That is not the case, only 40-50% actually show signs of the rash. Most tests done for lyme are not very accurate. My testing was done through Igenix, which is one of the top labs for lyme testing, but I had to pay out of pocket for it. It came back positive for lyme disease. So I was infected with the disease at some point in my life most likely when I was 8-10 years old. I remember getting terrible flu for a whole week, throwing up over 10 times with fever and chills. I then experienced frequent headaches, learning difficulties, and mood disturbances. These struggles continued to worsen in my teen years. I continued to get chronically sick, being put on multiple antibiotics off and on for various infections and having chronic fatigue with neurological issues. What I didn’t realize was that my immune system was so low from the lyme, it was leaving me vulnerable to other illnesses. At 20 years old, after a grueling process of trial and error medications, I was able to start college. I could get my course work done but that was the extent of my energy. I tried joining sports teams in college, but a few days of consistent practicing would bring me right down, and I’d get very sick. I was looking at kids the same age as me full of energy and I just knew then something was wrong. I shouldn’t be this fatigued all the time at my age. My symptoms have worsened in the past few months. My memory is so bad, I'm forgetting basic things, I walk into rooms and don't remember why I came in here, I confuse words, and mis hear what people say, I get really dizzy, vomiting, weakness, weight loss, blurry vision, racing thoughts, trouble walking, confusion, anxiety, neck pain and stiffness, heart palpitations, head pain and burning, insomnia, fevers, chills, head pressure, and now panic attacks. Chronic lyme is a disease that has a lot of debate around it. New York is pushing a bill to make long term antibiotics covered by insurance, but that could take a few years. It’s now admitted by the CDC that over 300,000 are infected each year from lyme. Most cases are in the north east states. It’s a disease that the CDC admits is growing, but yet they are doing very little about it. People who are infected often get misdiagnosed and suffer for many years. I recommend everyone see the documentary Under Our Skin.
How the Money is Spent.
I'm on a list of medicines and nutritional supplements that my parents help pay for. I will have to be on them for at least a year. The money being raised through the go fund me will be used for IV vitamin C, IV glutathione, and antibiotic treatments, (Insurance will not pay for these) through a nurse practitioner who works with lyme patients. This treatment is costly at $500 a week for 3 months. Here is a link to an article about the uses of glutathione treatments for multiple diseases.
http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
Glutathione treatment has been shown to be very effective for Lyme patients. Vitamin C IV therapy boosts the immune system and helps kill off the lyme as well. Then I will be on a mixture of antibiotics. This aggressive approach should be enough to kill off the lyme. I’ll also have to be on a very strict diet for a whole year. Meat and vegetables only, no sugar at all.
My Current Symptoms
As mentioned before my symptoms have become worse to the point where it's difficult to walk and do normal daily activities. My list of symptoms are memory impairment (brain fog), dyslexia, visual/spatial processing impairment, slowed processing of information, irritability, depression, anxiety, derealization, panic attacks, mood swings, insomnia, ADD, tremors, twitching, severe fatigue/weakness, migraines, chills/fevers, numbness in fingers & toes, memory loss, stiff neck, arthritis in fingers and knees, weight loss, shortness of breath, heart palpitations, nauseas/vomiting, jaw pain, and dizziness. Here are some articles about Lyme and psychiatric problems
http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf
https://www.psychologytoday.com/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0
http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars
http://www.wcax.com/story/32731609/northern-ny-sees-spike-in-lyme-disease
http://articles.mercola.com/sites/articles/archive/2016/08/13/under-our-skin-lyme-disease-2.aspx
https://www.youtube.com/watch?v=_QWCwO6VDNc&feature=share
What this means to me
For so long I've felt alone in this, not knowing what was causing all my symptoms. Staying away from friends, family, and just isolating myself because I had such low amount of energy and I was embarrassed that I felt this way. I've been very hesitant to even do a go fund me because I've always tried to figure things out on my own. But I can't now, I need the help of others to get through this. I greatly appreciate all the kindness and generosity people give, it has really made me a lot loss cynical about the world we live in. Some of my symptoms are definitely caused by the situation I was in while growing up, but I always felt it was more to it than just lacking an anti-depressant. And I was right. So many times now I know it would be easier just to end it all instead of continuing to try. But I can't it wouldn't be fair to my mom, dad, brothers, and family. I need to keep up the fight because I know there is a purpose to my life. I want to live again, I want to go back to college, I want to be able to work, I want to be able to do the things I used to love doing again. When I get through this illness, I'm not sure what I will be capable of, but I know I will not leave one stone left unturned. I will do something that will help make this world a better place in my own way. Thank you for all the support.
Here briefly is my story of diagnosis.
The past year has been hell for me. I've had to quit school, I can't work and every day I deal with flu like symptoms. I was on the drug Cymbalta but I was having a very hard time with the side effects on the drug and it was getting worse. But it was the only drug that helped with my chronic fatigue, add, and depression. Then I started to have less and less energy again to do the things that I enjoyed, such as wrestling, football, reading, going to college, gardening, and weight lifting. I began having terrible brain fog, and my dyslexia symptoms were getting worse, where I couldn't even read which used to be my past time. I was working on my bachelor’s degree in environmental science until my symptoms left me unable to continue school, forcing me to drop out. Not getting any answers from different doctors, I turned to a naturopathic doctor. I told her all my symptoms, and I was surprised she wanted to test me for lyme disease. I always thought with lyme you get a rash, go to the doctor and get antibiotics. That is not the case, only 40-50% actually show signs of the rash. Most tests done for lyme are not very accurate. My testing was done through Igenix, which is one of the top labs for lyme testing, but I had to pay out of pocket for it. It came back positive for lyme disease. So I was infected with the disease at some point in my life most likely when I was 8-10 years old. I remember getting terrible flu for a whole week, throwing up over 10 times with fever and chills. I then experienced frequent headaches, learning difficulties, and mood disturbances. These struggles continued to worsen in my teen years. I continued to get chronically sick, being put on multiple antibiotics off and on for various infections and having chronic fatigue with neurological issues. What I didn’t realize was that my immune system was so low from the lyme, it was leaving me vulnerable to other illnesses. At 20 years old, after a grueling process of trial and error medications, I was able to start college. I could get my course work done but that was the extent of my energy. I tried joining sports teams in college, but a few days of consistent practicing would bring me right down, and I’d get very sick. I was looking at kids the same age as me full of energy and I just knew then something was wrong. I shouldn’t be this fatigued all the time at my age. My symptoms have worsened in the past few months. My memory is so bad, I'm forgetting basic things, I walk into rooms and don't remember why I came in here, I confuse words, and mis hear what people say, I get really dizzy, vomiting, weakness, weight loss, blurry vision, racing thoughts, trouble walking, confusion, anxiety, neck pain and stiffness, heart palpitations, head pain and burning, insomnia, fevers, chills, head pressure, and now panic attacks. Chronic lyme is a disease that has a lot of debate around it. New York is pushing a bill to make long term antibiotics covered by insurance, but that could take a few years. It’s now admitted by the CDC that over 300,000 are infected each year from lyme. Most cases are in the north east states. It’s a disease that the CDC admits is growing, but yet they are doing very little about it. People who are infected often get misdiagnosed and suffer for many years. I recommend everyone see the documentary Under Our Skin.
How the Money is Spent.
I'm on a list of medicines and nutritional supplements that my parents help pay for. I will have to be on them for at least a year. The money being raised through the go fund me will be used for IV vitamin C, IV glutathione, and antibiotic treatments, (Insurance will not pay for these) through a nurse practitioner who works with lyme patients. This treatment is costly at $500 a week for 3 months. Here is a link to an article about the uses of glutathione treatments for multiple diseases.
http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
Glutathione treatment has been shown to be very effective for Lyme patients. Vitamin C IV therapy boosts the immune system and helps kill off the lyme as well. Then I will be on a mixture of antibiotics. This aggressive approach should be enough to kill off the lyme. I’ll also have to be on a very strict diet for a whole year. Meat and vegetables only, no sugar at all.
My Current Symptoms
As mentioned before my symptoms have become worse to the point where it's difficult to walk and do normal daily activities. My list of symptoms are memory impairment (brain fog), dyslexia, visual/spatial processing impairment, slowed processing of information, irritability, depression, anxiety, derealization, panic attacks, mood swings, insomnia, ADD, tremors, twitching, severe fatigue/weakness, migraines, chills/fevers, numbness in fingers & toes, memory loss, stiff neck, arthritis in fingers and knees, weight loss, shortness of breath, heart palpitations, nauseas/vomiting, jaw pain, and dizziness. Here are some articles about Lyme and psychiatric problems
http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf
https://www.psychologytoday.com/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0
http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars
http://www.wcax.com/story/32731609/northern-ny-sees-spike-in-lyme-disease
http://articles.mercola.com/sites/articles/archive/2016/08/13/under-our-skin-lyme-disease-2.aspx
https://www.youtube.com/watch?v=_QWCwO6VDNc&feature=share
What this means to me
For so long I've felt alone in this, not knowing what was causing all my symptoms. Staying away from friends, family, and just isolating myself because I had such low amount of energy and I was embarrassed that I felt this way. I've been very hesitant to even do a go fund me because I've always tried to figure things out on my own. But I can't now, I need the help of others to get through this. I greatly appreciate all the kindness and generosity people give, it has really made me a lot loss cynical about the world we live in. Some of my symptoms are definitely caused by the situation I was in while growing up, but I always felt it was more to it than just lacking an anti-depressant. And I was right. So many times now I know it would be easier just to end it all instead of continuing to try. But I can't it wouldn't be fair to my mom, dad, brothers, and family. I need to keep up the fight because I know there is a purpose to my life. I want to live again, I want to go back to college, I want to be able to work, I want to be able to do the things I used to love doing again. When I get through this illness, I'm not sure what I will be capable of, but I know I will not leave one stone left unturned. I will do something that will help make this world a better place in my own way. Thank you for all the support.
Organizer
Jacob Stehlar
Organizer
Byron, NY
