Rob's Lyme Disease Fund
Donation protected
Hello all,
I would first like to start by sincerely thanking you for taking the time to visit this site and read about my story. I know just how valuable your time is and I cannot express how grateful I am for the love and support I have received on this wild journey.
Before I dive in to my story, I want to share a little bit of information on Lyme Disease from lymedisease.org:
What Is Lyme Disease?
Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia Burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart. Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked. The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher.
How Do People Get Lyme Disease?
Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten. Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream.
Lyme Disease Symptoms:
Symptoms of early Lyme disease may present as a flu-like illness (fever, chills, sweats, muscle aches, fatigue, nausea, and joint pain). Some patients have a rash or Bell’s palsy (facial drooping). However, although a rash shaped like a bull’s-eye is considered characteristic of Lyme disease, many people develop a different kind of Lyme rash or none at all. Estimates of patients who develop a Lyme rash vary widely, ranging from about 30% to 80%. For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash. If Lyme disease is not diagnosed and treated early, it may become late-stage or chronic. This may also occur when early treatment is inadequate. Lyme disease may spread to any part of the body and affect any body system.
My Story:
As you may know, I have been battling Lyme Disease + coinfections for about 6 years now. In July/August of 2013, a few days after a camping trip to my favorite place on earth – Kern River, which is located in the Sequoia National Forest in Southern CA – I began to develop a red, swollen, itchy rash that would eventually turn into the "Bullseye Rash," or Erythema Migrans, mentioned above. I had no idea why I had a rash as I never felt or saw anything bite me. After looking online and reading more about the rash, I realized that this was possibly an early sign of a nasty tick-borne illness. Sure enough, a trip to urgent care confirmed that it was in fact the early stages of Lyme Disease and I was sent home with some antibiotics and a packet of information regarding the disease. Little did I know, the antibiotics would not be enough to completely eradicate the aggressive Borrelia Burgdorferi bacteria, and I would eventually be experiencing a lot of what was in that packet.
First, I began having stomach problems such as frequent diarrhea and upset stomach. I eventually had to stop eating breakfast and lunch during my work week because I would need a restroom almost immediately after eating. I assumed this was due to the antibiotics, but 6 years later, the problem is still as constant and present as ever, and I am always having to make sure there is a restroom nearby just in case my food doesn’t settle. Then began the fatigue. There were some days where I felt like I was too exhausted to even breathe. Other days, I had no energy at all and just wanted to sleep. But then some days were normal. I always thought that maybe this was because of the hard work involved with installing solar panels in inclement weather, but I started noticing these things outside of work as well. The joint pain came next. Although I had been in a few dirt bike accidents resulting in some broken bones several years prior to the tick bite, the pain I started experiencing was different than that of the normal aches from my previous injuries. After about 3 years, this progressed into intense leg and foot pain. There were some days where it was very difficult for me to even stand up in the shower because of the pain, or days where it felt painfully impossible to get out of bed even after a full night’s rest. At that time, I just assumed that the solar industry was kicking my butt; I had no idea that the Lyme bacteria was still in my body wreaking havoc and that these symptoms would only get worse.
In the middle of all of this, I started noticing my anxiety slowly getting worse; from being worried here and there for no reason, to experiencing extreme anxiety and panic that even medication cannot seem to control. It is now so bad that I am no longer able to do many of the things I used to, such as traveling on planes, long drives away from home or through desolate areas, being in or on something that I cannot escape from if panic sets in, and being in any situation that I cannot control. I have developed many irrational fears and phobias that I know deep down pose absolutely no threat to me, but due to the neurological damage that the Lyme has done over the years, I am no longer able to control these feelings. I have seen therapists and tried countless medications that either did not work or left me feeling worse because of the side effects, one of which resulted in dizzy spells and buzzing/tingling sensations throughout my body that took me out of work for 6 weeks.
Throughout these 6 years, I have had several appointments with doctors about these issues but have always been dismissed and told that my (many) symptoms were simply a case of IBS and arthritis, even after telling them that I had the bullseye rash shortly after a camping trip in an area known to harbor ticks, and was prescribed medication specific to treating Lyme. A Western Blot test (which is only about 50% accurate) is the standard go-to test for most doctors to determine whether someone is infected with Lyme, but all 3 times I had the test done, it came back negative. With each negative result, my symptoms and my concerns about having this disease were continuously dismissed as health anxiety by my doctors. It wasn't until I was introduced to other people who had Lyme that I finally started moving in the right direction.
In June of 2019, after finally seeing a Lyme Literate Medical Doctor (LLMD), I was able to confirm through a DNA test that I still in fact have Lyme. I was also made aware of a few coinfections that I have. Yep, ticks don't only carry Lyme; they can carry several other nasty diseases which can all be transmitted via the same tick bite. My DNA test showed that I have Borrelia Burgdorferi (Lyme), Borrelia Recurrentis (Tick-Borne Relapsing Fever) and Bartonella Bacilliformis which is the etiologic agent of Carrion's Disease. I was terrified to see this, but at the same time I was slightly relieved to know that I wasn't going crazy and that there was something causing me to feel the way I do. However, despite having the DNA test results, several doctors including a Neurologist and an Infectious Disease Specialist continued to insist I did not have Lyme Disease. The moment I would mention the Lyme, the doctors’ attitude and demeanor would immediately become apathetic. The ID specialist even said that because Lyme is not common in California (which it actually is in all 50 states now), the likelihood of me having Lyme or any coinfection was very low. This just goes to show how horrible these doctors can be even with PROOF, and how important it is to be your own advocate when it comes to your health. Thankfully, I had found a great LLMD that was willing to help me get my life back.
I began supplementing with some peptides and Ozone IV therapy. I am still taking the peptides but decided to stop the Ozone IV after a bad experience with it. After a ton of research and joining several support groups on Facebook, I was introduced to a fairly new treatment for Lyme called Supportive Oligonucleotide Technique (S.O.T.) that seems to be the closest thing to a "cure" that we have. S.O.T. has been around for 20+ years, originally to treat cancer patients, and was just recently introduced into the Lyme world thanks to RGCC Labs in Greece. The idea behind this treatment is to create a synthetic formula by using reverse-engineering in which a messenger RNA (mRNA) is used to disrupt the DNA of the Lyme cells in order to destroy them. Once the Lyme finishes living out its ridiculously long life cycle of 80 days, the Lyme then dies off and exits the body as it can no longer replicate due to the S.O.T. Once all the Lyme is gone, your body can get its immune system back up and running since it is no longer suppressed by the Lyme, and not only begin healing, but fighting off the remaining coinfections as well. The S.O.T. is active for up to 6 months, after which time I will then have another DNA test done to see if the Lyme is completely gone. If not, then I will need another dose and so on. There is currently no guarantee for this treatment, especially since this disease is so complex and everyone's experience differs, but there seems to be a lot of hope. I had my S.O.T. administered on 11/04/19 and I am very excited to start this journey of healing and getting my life back.
Unfortunately, none of these treatments are covered by health insurance as Lyme Disease is not recognized as a chronic illness by the Centers for Disease Control and Prevention (CDC). All of these very expensive doctor visits and medications have all been out of pocket. The doctor visits range from $300-$600, the medications are around $150-$200 each, and the Ozone IV starts at $150 and goes up from there. Not to mention all the bloodwork, the DNA testing, and the $4,000 for the S.O.T. which I had to pay in advance. If the S.O.T. does not get rid of the Lyme, I will need another dose and will need to fork out another $4,000, plus the DNA testing in between, and the medications I am currently taking to help my body heal. As you can see, this can get extremely expensive. We have already spent close to $10,000 in just 6 months. We have finally reached the point to where we are no longer able to afford these treatments and have been running up credit cards to keep up with it. This is why I have decided to create this GoFundMe. I will continue to post updates below on my progress and keep you all informed on how things are going. It is normal to experience a Herxheimer Reaction (which is basically a flare up) after the S.O.T. due to the Lyme die off but otherwise I am keeping positive and hopeful. I have an amazing woman that has been by my side since day 1 that has been supporting me throughout this nightmare, as well as my amazing family, friends, and fellow Lyme Warriors. Without all of you, I would not be able to get through this alone.
Donation or not, I sincerely thank you again for taking the time to read this and if there are any questions or concerns, please feel free to email me at [email redacted].
IF YOU KNOW OF ANYONE STRUGGLING WITH LYME AND THEY NEED HELP, PLEASE LET ME KNOW!
I know how hard it is to go through this with no answers and if there is any way I can help point someone in the right direction or help in any way possible, I would be more than grateful for the opportunity to do so.
Here are some links with more information on Lyme Disease:
https://www.lymedisease.org/
https://globallymealliance.org/
https://maddyraecooper.com/about
https://theavrillavignefoundation.org/lyme
https://lymelightfoundation.org/
YouTube videos:
https://www.youtube.com/watch?v=MgVuSSoHrJg (How S.O.T./Antisense drugs work)
Here are some amazing Facebook groups:
https://www.facebook.com/groups/215303912495602/
https://www.facebook.com/groups/450390065775761/?fref=nf
https://www.facebook.com/groups/329241737697925/
https://www.facebook.com/groups/246242632082702/
I would first like to start by sincerely thanking you for taking the time to visit this site and read about my story. I know just how valuable your time is and I cannot express how grateful I am for the love and support I have received on this wild journey.
Before I dive in to my story, I want to share a little bit of information on Lyme Disease from lymedisease.org:
What Is Lyme Disease?
Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia Burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart. Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked. The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher.
How Do People Get Lyme Disease?
Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten. Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream.
Lyme Disease Symptoms:
Symptoms of early Lyme disease may present as a flu-like illness (fever, chills, sweats, muscle aches, fatigue, nausea, and joint pain). Some patients have a rash or Bell’s palsy (facial drooping). However, although a rash shaped like a bull’s-eye is considered characteristic of Lyme disease, many people develop a different kind of Lyme rash or none at all. Estimates of patients who develop a Lyme rash vary widely, ranging from about 30% to 80%. For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash. If Lyme disease is not diagnosed and treated early, it may become late-stage or chronic. This may also occur when early treatment is inadequate. Lyme disease may spread to any part of the body and affect any body system.
My Story:
As you may know, I have been battling Lyme Disease + coinfections for about 6 years now. In July/August of 2013, a few days after a camping trip to my favorite place on earth – Kern River, which is located in the Sequoia National Forest in Southern CA – I began to develop a red, swollen, itchy rash that would eventually turn into the "Bullseye Rash," or Erythema Migrans, mentioned above. I had no idea why I had a rash as I never felt or saw anything bite me. After looking online and reading more about the rash, I realized that this was possibly an early sign of a nasty tick-borne illness. Sure enough, a trip to urgent care confirmed that it was in fact the early stages of Lyme Disease and I was sent home with some antibiotics and a packet of information regarding the disease. Little did I know, the antibiotics would not be enough to completely eradicate the aggressive Borrelia Burgdorferi bacteria, and I would eventually be experiencing a lot of what was in that packet.
First, I began having stomach problems such as frequent diarrhea and upset stomach. I eventually had to stop eating breakfast and lunch during my work week because I would need a restroom almost immediately after eating. I assumed this was due to the antibiotics, but 6 years later, the problem is still as constant and present as ever, and I am always having to make sure there is a restroom nearby just in case my food doesn’t settle. Then began the fatigue. There were some days where I felt like I was too exhausted to even breathe. Other days, I had no energy at all and just wanted to sleep. But then some days were normal. I always thought that maybe this was because of the hard work involved with installing solar panels in inclement weather, but I started noticing these things outside of work as well. The joint pain came next. Although I had been in a few dirt bike accidents resulting in some broken bones several years prior to the tick bite, the pain I started experiencing was different than that of the normal aches from my previous injuries. After about 3 years, this progressed into intense leg and foot pain. There were some days where it was very difficult for me to even stand up in the shower because of the pain, or days where it felt painfully impossible to get out of bed even after a full night’s rest. At that time, I just assumed that the solar industry was kicking my butt; I had no idea that the Lyme bacteria was still in my body wreaking havoc and that these symptoms would only get worse.
In the middle of all of this, I started noticing my anxiety slowly getting worse; from being worried here and there for no reason, to experiencing extreme anxiety and panic that even medication cannot seem to control. It is now so bad that I am no longer able to do many of the things I used to, such as traveling on planes, long drives away from home or through desolate areas, being in or on something that I cannot escape from if panic sets in, and being in any situation that I cannot control. I have developed many irrational fears and phobias that I know deep down pose absolutely no threat to me, but due to the neurological damage that the Lyme has done over the years, I am no longer able to control these feelings. I have seen therapists and tried countless medications that either did not work or left me feeling worse because of the side effects, one of which resulted in dizzy spells and buzzing/tingling sensations throughout my body that took me out of work for 6 weeks.
Throughout these 6 years, I have had several appointments with doctors about these issues but have always been dismissed and told that my (many) symptoms were simply a case of IBS and arthritis, even after telling them that I had the bullseye rash shortly after a camping trip in an area known to harbor ticks, and was prescribed medication specific to treating Lyme. A Western Blot test (which is only about 50% accurate) is the standard go-to test for most doctors to determine whether someone is infected with Lyme, but all 3 times I had the test done, it came back negative. With each negative result, my symptoms and my concerns about having this disease were continuously dismissed as health anxiety by my doctors. It wasn't until I was introduced to other people who had Lyme that I finally started moving in the right direction.
In June of 2019, after finally seeing a Lyme Literate Medical Doctor (LLMD), I was able to confirm through a DNA test that I still in fact have Lyme. I was also made aware of a few coinfections that I have. Yep, ticks don't only carry Lyme; they can carry several other nasty diseases which can all be transmitted via the same tick bite. My DNA test showed that I have Borrelia Burgdorferi (Lyme), Borrelia Recurrentis (Tick-Borne Relapsing Fever) and Bartonella Bacilliformis which is the etiologic agent of Carrion's Disease. I was terrified to see this, but at the same time I was slightly relieved to know that I wasn't going crazy and that there was something causing me to feel the way I do. However, despite having the DNA test results, several doctors including a Neurologist and an Infectious Disease Specialist continued to insist I did not have Lyme Disease. The moment I would mention the Lyme, the doctors’ attitude and demeanor would immediately become apathetic. The ID specialist even said that because Lyme is not common in California (which it actually is in all 50 states now), the likelihood of me having Lyme or any coinfection was very low. This just goes to show how horrible these doctors can be even with PROOF, and how important it is to be your own advocate when it comes to your health. Thankfully, I had found a great LLMD that was willing to help me get my life back.
I began supplementing with some peptides and Ozone IV therapy. I am still taking the peptides but decided to stop the Ozone IV after a bad experience with it. After a ton of research and joining several support groups on Facebook, I was introduced to a fairly new treatment for Lyme called Supportive Oligonucleotide Technique (S.O.T.) that seems to be the closest thing to a "cure" that we have. S.O.T. has been around for 20+ years, originally to treat cancer patients, and was just recently introduced into the Lyme world thanks to RGCC Labs in Greece. The idea behind this treatment is to create a synthetic formula by using reverse-engineering in which a messenger RNA (mRNA) is used to disrupt the DNA of the Lyme cells in order to destroy them. Once the Lyme finishes living out its ridiculously long life cycle of 80 days, the Lyme then dies off and exits the body as it can no longer replicate due to the S.O.T. Once all the Lyme is gone, your body can get its immune system back up and running since it is no longer suppressed by the Lyme, and not only begin healing, but fighting off the remaining coinfections as well. The S.O.T. is active for up to 6 months, after which time I will then have another DNA test done to see if the Lyme is completely gone. If not, then I will need another dose and so on. There is currently no guarantee for this treatment, especially since this disease is so complex and everyone's experience differs, but there seems to be a lot of hope. I had my S.O.T. administered on 11/04/19 and I am very excited to start this journey of healing and getting my life back.
Unfortunately, none of these treatments are covered by health insurance as Lyme Disease is not recognized as a chronic illness by the Centers for Disease Control and Prevention (CDC). All of these very expensive doctor visits and medications have all been out of pocket. The doctor visits range from $300-$600, the medications are around $150-$200 each, and the Ozone IV starts at $150 and goes up from there. Not to mention all the bloodwork, the DNA testing, and the $4,000 for the S.O.T. which I had to pay in advance. If the S.O.T. does not get rid of the Lyme, I will need another dose and will need to fork out another $4,000, plus the DNA testing in between, and the medications I am currently taking to help my body heal. As you can see, this can get extremely expensive. We have already spent close to $10,000 in just 6 months. We have finally reached the point to where we are no longer able to afford these treatments and have been running up credit cards to keep up with it. This is why I have decided to create this GoFundMe. I will continue to post updates below on my progress and keep you all informed on how things are going. It is normal to experience a Herxheimer Reaction (which is basically a flare up) after the S.O.T. due to the Lyme die off but otherwise I am keeping positive and hopeful. I have an amazing woman that has been by my side since day 1 that has been supporting me throughout this nightmare, as well as my amazing family, friends, and fellow Lyme Warriors. Without all of you, I would not be able to get through this alone.
Donation or not, I sincerely thank you again for taking the time to read this and if there are any questions or concerns, please feel free to email me at [email redacted].
IF YOU KNOW OF ANYONE STRUGGLING WITH LYME AND THEY NEED HELP, PLEASE LET ME KNOW!
I know how hard it is to go through this with no answers and if there is any way I can help point someone in the right direction or help in any way possible, I would be more than grateful for the opportunity to do so.
Here are some links with more information on Lyme Disease:
https://www.lymedisease.org/
https://globallymealliance.org/
https://maddyraecooper.com/about
https://theavrillavignefoundation.org/lyme
https://lymelightfoundation.org/
YouTube videos:
https://www.youtube.com/watch?v=MgVuSSoHrJg (How S.O.T./Antisense drugs work)
Here are some amazing Facebook groups:
https://www.facebook.com/groups/215303912495602/
https://www.facebook.com/groups/450390065775761/?fref=nf
https://www.facebook.com/groups/329241737697925/
https://www.facebook.com/groups/246242632082702/
Organizer
Robert Toledo
Organizer
Lancaster, CA
