Before everyone jumps to conclusions, this is not another post about someone convincing everyone they have lyme and not ALS. I just need to get my twin brother's story out there since his passing a few months ago.
My name is John and my twin brother Scott was diagnosed first with lyme disease 3.5 yrs ago and then ALS immediately after. My brother Scott was 28 yrs old at diagnosis. Here is his story.
Scott was in unbelievable shape. He ate healthy, worked out daily and was in amazing shape. Muscular, healthy, strong and extremely athletic. Scott was a school teacher for a few years, a football and baseball coach and then he became a New Jersey state trooper.
Scott loved to hunt and fish. He was in the woods constantly and where we live, there is a very high concentration of lyme disease. Hunterdon County NJ is one of the highest lyme populations in the country and this is where Scott worked, hunted and fished. Always finding ticks on him, never did we think lyme would turn into something like this.
About 3.5 years ago Scott started with the typical lyme symptoms, rash, headache, fatigue, ringing of the ears, joint pain, severe neck stiffness, constantly sweating, etc. He went to the doctor which he tested for lymes, negative, yet prescribed Scott the two week cycle of oral lyme antibiotics. This did not make Scott any better, instead he starting getting worse. A few months later he started getting muscle twitching down his arm and weakness in this arm. He started going to neurologists who couldn't figure out what was wrong. After many tests, they labeled him with ALS. These doctors said lyme would not cause this, even though his age didn't fall into the "typical age range" of ALS.
Our family knew that this ALS or MND started with lyme disease. We saw his rash and overwhelming amount of symptoms that were consistent with lyme disease. His rash came and went numerous times over the course of the next year. Scott then sent his blood work to multiple laboratories where he finally tested positive for Lyme disease on numerous occasions. The doctors still would not treat him for lymes because he already received the two week treatment of oral antibiotics and because these doctors said his MND was unrelated to the lyme.
Scott went to several, out of network, doctors for the next two years. He received numerous cocktails of IV antibiotics including rocephrine. None of these antibiotics made him better and he kept getting worse.
Scott passed away a few months ago after a 3.5 yr battle with MND. My family and I still believe that lyme disease caused this. He suffered tremendously for 3 years, in every aspect, mentality and physically. It was hell watching my youthful twin, dying of some unknown disease.
The reason I write this is to get all this off my chest but also to inform everyone that Lyme does cause ALS. I have seen it first hand. My brother was way too young for the disease, no in my family has ever had it. His lyme symptoms started a couple months before his MND symptoms. Scott was only 31 years old at his death. I believe that lyme will cause an autoimmune response within certain peoples bodies. This auto immune response will cause peoples bodies to react in different ways to find the disease. I believe lyme disease triggered Scott's MND once the spirochetes of the lyme got into his nervous system. The ALS/MND was a auto immune response to fight off the lyme infection.
Doctors know nothing about ALS. No cure, no treatment, no triggers. So why can't lyme be a cause for ALS? Why won't more doctors or researchers look into this? There is a lot of info on the internet about the lyme als connection, and Im sure a lot of you think it is BS. Im here to tell you I personally dealt with this through my brother and know that Lyme disease did cause this and it is a major issue in the medical community. My parents paid out of pocket for all of scotts treatment. Scott had great insurance, yet they would not cover any of his expenses due to the fact that his doctors said he had als and not lyme.
Im not trying to ramble on, but I need the community to know that lyme disease is serious and can lead to MND. I don't know if Scotts disease could of been stopped or prevented, but there is a need for more research. More doctors and people in the community have to be aware and have more of a open mind of a disease they don't even have a grasp on. My brother was way too young to die and way to young to develop this disease. Lyme disease can cause this horrible disease. My brother was proof.
This is just my story. i appreciate anyone who took the time to read this and apologize if i offended anyone. My family and I are still in shock over my brothers diagnosis, illness and death. Just doesn't make sense especially when lyme disease really did start everything.
My name is John and my twin brother Scott was diagnosed first with lyme disease 3.5 yrs ago and then ALS immediately after. My brother Scott was 28 yrs old at diagnosis. Here is his story.
Scott was in unbelievable shape. He ate healthy, worked out daily and was in amazing shape. Muscular, healthy, strong and extremely athletic. Scott was a school teacher for a few years, a football and baseball coach and then he became a New Jersey state trooper.
Scott loved to hunt and fish. He was in the woods constantly and where we live, there is a very high concentration of lyme disease. Hunterdon County NJ is one of the highest lyme populations in the country and this is where Scott worked, hunted and fished. Always finding ticks on him, never did we think lyme would turn into something like this.
About 3.5 years ago Scott started with the typical lyme symptoms, rash, headache, fatigue, ringing of the ears, joint pain, severe neck stiffness, constantly sweating, etc. He went to the doctor which he tested for lymes, negative, yet prescribed Scott the two week cycle of oral lyme antibiotics. This did not make Scott any better, instead he starting getting worse. A few months later he started getting muscle twitching down his arm and weakness in this arm. He started going to neurologists who couldn't figure out what was wrong. After many tests, they labeled him with ALS. These doctors said lyme would not cause this, even though his age didn't fall into the "typical age range" of ALS.
Our family knew that this ALS or MND started with lyme disease. We saw his rash and overwhelming amount of symptoms that were consistent with lyme disease. His rash came and went numerous times over the course of the next year. Scott then sent his blood work to multiple laboratories where he finally tested positive for Lyme disease on numerous occasions. The doctors still would not treat him for lymes because he already received the two week treatment of oral antibiotics and because these doctors said his MND was unrelated to the lyme.
Scott went to several, out of network, doctors for the next two years. He received numerous cocktails of IV antibiotics including rocephrine. None of these antibiotics made him better and he kept getting worse.
Scott passed away a few months ago after a 3.5 yr battle with MND. My family and I still believe that lyme disease caused this. He suffered tremendously for 3 years, in every aspect, mentality and physically. It was hell watching my youthful twin, dying of some unknown disease.
The reason I write this is to get all this off my chest but also to inform everyone that Lyme does cause ALS. I have seen it first hand. My brother was way too young for the disease, no in my family has ever had it. His lyme symptoms started a couple months before his MND symptoms. Scott was only 31 years old at his death. I believe that lyme will cause an autoimmune response within certain peoples bodies. This auto immune response will cause peoples bodies to react in different ways to find the disease. I believe lyme disease triggered Scott's MND once the spirochetes of the lyme got into his nervous system. The ALS/MND was a auto immune response to fight off the lyme infection.
Doctors know nothing about ALS. No cure, no treatment, no triggers. So why can't lyme be a cause for ALS? Why won't more doctors or researchers look into this? There is a lot of info on the internet about the lyme als connection, and Im sure a lot of you think it is BS. Im here to tell you I personally dealt with this through my brother and know that Lyme disease did cause this and it is a major issue in the medical community. My parents paid out of pocket for all of scotts treatment. Scott had great insurance, yet they would not cover any of his expenses due to the fact that his doctors said he had als and not lyme.
Im not trying to ramble on, but I need the community to know that lyme disease is serious and can lead to MND. I don't know if Scotts disease could of been stopped or prevented, but there is a need for more research. More doctors and people in the community have to be aware and have more of a open mind of a disease they don't even have a grasp on. My brother was way too young to die and way to young to develop this disease. Lyme disease can cause this horrible disease. My brother was proof.
This is just my story. i appreciate anyone who took the time to read this and apologize if i offended anyone. My family and I are still in shock over my brothers diagnosis, illness and death. Just doesn't make sense especially when lyme disease really did start everything.