Why Helping Danielle Will Go A Long Way
Donation protected
My name is Danielle DeVivo and I’m a single mother of two beautiful girls ages 3 and 12. I have struggled with Lyme Disease for my entire adult life. I was bitten by the tick when I was 21 years old and wasn’t diagnosed until I was 29 when I received a CDC positive test. As any Lyme Disease sufferer knows, the longer the disease is left to ravage your body, the more deeply and permanently you are likely to be affected. For me the worst symptom has been the rheumatic pain that long term Lyme Disease causes. Unfortunately, it attacked my soft tissue structures, especially my spine, and I was diagnosed with Degenerative Disc Disease at age 32.
I then had an unsuccessful brain surgery a year later due to an undiagnosed “co-infection” called Tularemia. Had this been diagnosed in a timely manner and treated effectively, I could have avoided some of the vast circularity problems it can cause. Tularemia is so inflammatory that it causes the cytokines (your body’s way of producing a signal between the cells that there is an inflammatory problem,) to be in such large numbers that it makes your blood more viscous, thereby a large factor in the formation of vascular issues.
For me those vascular issues presented themselves as the formation of three aneurysms in my brain that appeared in a matter of months. I know this because I had an MRI of my head approximately a year earlier to check my brain due to the positive Lyme Disease test, and these aneurysms were not present at the time.
It wasn’t until about a year later when suddenly I started having strange visual migraines. When the next MRI came around the aneurysms were found. I was told that two of them were inoperable, but they were very small and not requiring surgery at the time. However, one was located near my optical nerve and was the larger of the three, causing the visual migraines and large enough that it was a good idea to operate with a stent and coil.
Unfortunately, the brain surgeon didn’t consider my young age at the time, affecting the hyper plasticity of my vessels which tend to move around in younger patients (he had never operated in someone as young at the time,) and he wasn’t able to complete the surgery. That surgery lasted 7 hours instead of the usual 1.5 hours it normally takes, causing some trauma to my brain which led to a small stroke.
Fortunately, I made a complete recovery and at my 6th month follow up visit, they discovered that my aneurysm of concern had shrunk to half the size and was no longer considered a danger. That only happens “one in 10 million” of cases. I also learned from the brain surgeon that many people in their prime are walking around with small imperfections in their brains, they just aren’t ever found because they cause no symptoms, therefore are never seen. He said that my brain would now be considered in this group of people now that the larger area of concern was half the size. I’m happy to report that I’ve maintained that status for about 8 years now as I’m 40, and this occurred when I was 32.
I’ve been dealing with intense pain for a very long time now, and to make matters worse, I’ve had to fight at every turn just to receive adequate healthcare for the proper treatment of Lyme Disease. At the present time, I’ve had two failed back surgeries because the Lyme Disease sparked a condition called Arachnoiditis, requiring treatment by a specialist to be properly managed because there is no cure for it. Unfortunately, there are only a few Arachnoiditis specialist in the country, so I’ve carved a path for myself that has a very good chance to succeed (about 85%) for another back surgery which is likely to be successful since the doctors now know that the Arachnoiditis condition was at play with the failure of the previous two surgeries.
The financial assistance I am asking for will be used in the following ways:
1) To help pay for the bills I have not been able to cover in the last 6 months while I was out of work recovering from the second failed back surgery
2) To fund the travel to the Arachnoiditis specialist in California who must have a face-to-face visit with me in order to take me on officially as a patient
3) The out-of-pocket expenses associated with the surgery fusion of my L5/S1, which God willing will be the third and final surgery
4) And finally, to pay the bills during the time I am out of work recovering from this final operation
All these health conditions have already taken my ability to work full time and any money I’ve made beyond just paying the bills. Yet I am still one of the fortunate few that has received at least some treatment because I could pay out of pocket, as my years of education allowed me the ability to make decent money and be self-employed so that I could work the hours around my times of worst pain and deal with the sheer number of medical appointments that come with these health issues. I have insurance, but far too much of the treatment that chronic pain and Lyme Disease sufferers need is not covered by insurance.
The one positive thing that’s going to come out of all this, is my promise to other chronic pain and Lyme Disease sufferers that I will fight for their rights to get the proper medication treatment they need, because I have experienced first-hand the collateral damage inflicted on chronic pain sufferers by the CDC guidelines of 2016. These guidelines have caused such unintended consequences, that on June 16, 2020, the American Medical Association sent the CDC a 17-page letter with clear recommendations to update their guidelines as soon as possible to stop the collateral damage to legitimate chronic pain sufferers (see link to the AMA letter at the end of this page.)
To embark on this mission, I am seeking financial help for the surgery so that I can get stabilized and return to working full time again and continue to provide for my two girls as I always have and continue the fight to help other chronic pain and Lyme Disease patients get the medication treatment they need.
Please share this page on your social media profiles, email the link to your friends and family, and donate what you can to help me not just recover from this dire situation, but so I can also come back strong to help the thousands of other chronic pain sufferers that need a voice. You see, I have been asked to contribute to help write the legislation that will soon be proposed to the New York State legislature by the largest national activist group called ‘Don’t Punish Pain’. This is my mission and I’ve been collecting data and substantial evidence to do my part in it.
I am convinced that if I can get this surgery and get stabilized, I will be able to work full time again. But right now, I’m too worn-down coping with debilitating pain to be of much help to anyone until I can get this chance to have the reserves of energy needed to further this cause to the community I’ve pledged my commitment to. I have no disc material left in my L5 so the fusion surgery is the only hope to stop this excruciating spinal pain and get me back on the road to recovery.
It’s difficult for an independent person like me to ask for financial help. But a good friend convinced me that there’s nothing left to do but to surrender and ask for help because it will allow me to come back stronger and help many others in this same situation I’m in today. I’m hoping that reaching out finally for the help I need to bridge myself to the next surgery and the specialist in California who is self-pay, is my only chance to get the pain relief I so desperately need. My surgeon is excellent, and he has come up with a promising plan to irrigate the entire area during the surgery with an antibiotic liquid to give my spine the best chance of recovery.
Whatever amount you can donate will be greatly appreciated, no matter how small or large. Every dollar counts and your generosity will not only help me but will go a long way in helping other chronic pain sufferers who I’ll be fighting for in the NY State legislature when I recover.
Thank you so much for taking the time to read my message - and please remember to share this page on social media and with your friends and family.
------------
What Everyone Ought to Know About the Policies that Restrict Chronic Pain Patients from Access to Legitimate Medical Care
People with chronic pain from other means besides cancer, as myself who’s Lyme Disease and two failed back surgeries have resulted in the painful spine condition called Arachnoiditis, are flat out being denied treatment, even with an impeccable record and everything a patient could possibly need to adequately, and in accordance with the law get proper medication treatment. - Why is this? - Because in 2016 the Centers for Disease Control (CDC,) published the Guidelines for Prescribing Opioids for Chronic Pain that has resulted in chronic pain suffers being lumped in together with heroin users. The 2016 CDC guidelines have caused such unintended consequences to legitimate chronic pain sufferers, that on June 16, 2020, the American Medical Association sent the CDC a 17-page letter with clear recommendations to update their 2016 guidelines to stop the collateral damage currently being inflicted on chronic pain sufferers by the misuse of such guidelines.
Here is the link to the full AMA letter sent to the CDC:
https://searchlf.ama-assn.org/undefined/documentDownload?uri=%2Funstructured%2Fbinary%2Fletter%2FLETTERS%2F2020-6-16-Letter-to-Dowell-re-Opioid-Rx-Guideline.pdf
I then had an unsuccessful brain surgery a year later due to an undiagnosed “co-infection” called Tularemia. Had this been diagnosed in a timely manner and treated effectively, I could have avoided some of the vast circularity problems it can cause. Tularemia is so inflammatory that it causes the cytokines (your body’s way of producing a signal between the cells that there is an inflammatory problem,) to be in such large numbers that it makes your blood more viscous, thereby a large factor in the formation of vascular issues.
For me those vascular issues presented themselves as the formation of three aneurysms in my brain that appeared in a matter of months. I know this because I had an MRI of my head approximately a year earlier to check my brain due to the positive Lyme Disease test, and these aneurysms were not present at the time.
It wasn’t until about a year later when suddenly I started having strange visual migraines. When the next MRI came around the aneurysms were found. I was told that two of them were inoperable, but they were very small and not requiring surgery at the time. However, one was located near my optical nerve and was the larger of the three, causing the visual migraines and large enough that it was a good idea to operate with a stent and coil.
Unfortunately, the brain surgeon didn’t consider my young age at the time, affecting the hyper plasticity of my vessels which tend to move around in younger patients (he had never operated in someone as young at the time,) and he wasn’t able to complete the surgery. That surgery lasted 7 hours instead of the usual 1.5 hours it normally takes, causing some trauma to my brain which led to a small stroke.
Fortunately, I made a complete recovery and at my 6th month follow up visit, they discovered that my aneurysm of concern had shrunk to half the size and was no longer considered a danger. That only happens “one in 10 million” of cases. I also learned from the brain surgeon that many people in their prime are walking around with small imperfections in their brains, they just aren’t ever found because they cause no symptoms, therefore are never seen. He said that my brain would now be considered in this group of people now that the larger area of concern was half the size. I’m happy to report that I’ve maintained that status for about 8 years now as I’m 40, and this occurred when I was 32.
I’ve been dealing with intense pain for a very long time now, and to make matters worse, I’ve had to fight at every turn just to receive adequate healthcare for the proper treatment of Lyme Disease. At the present time, I’ve had two failed back surgeries because the Lyme Disease sparked a condition called Arachnoiditis, requiring treatment by a specialist to be properly managed because there is no cure for it. Unfortunately, there are only a few Arachnoiditis specialist in the country, so I’ve carved a path for myself that has a very good chance to succeed (about 85%) for another back surgery which is likely to be successful since the doctors now know that the Arachnoiditis condition was at play with the failure of the previous two surgeries.
The financial assistance I am asking for will be used in the following ways:
1) To help pay for the bills I have not been able to cover in the last 6 months while I was out of work recovering from the second failed back surgery
2) To fund the travel to the Arachnoiditis specialist in California who must have a face-to-face visit with me in order to take me on officially as a patient
3) The out-of-pocket expenses associated with the surgery fusion of my L5/S1, which God willing will be the third and final surgery
4) And finally, to pay the bills during the time I am out of work recovering from this final operation
All these health conditions have already taken my ability to work full time and any money I’ve made beyond just paying the bills. Yet I am still one of the fortunate few that has received at least some treatment because I could pay out of pocket, as my years of education allowed me the ability to make decent money and be self-employed so that I could work the hours around my times of worst pain and deal with the sheer number of medical appointments that come with these health issues. I have insurance, but far too much of the treatment that chronic pain and Lyme Disease sufferers need is not covered by insurance.
The one positive thing that’s going to come out of all this, is my promise to other chronic pain and Lyme Disease sufferers that I will fight for their rights to get the proper medication treatment they need, because I have experienced first-hand the collateral damage inflicted on chronic pain sufferers by the CDC guidelines of 2016. These guidelines have caused such unintended consequences, that on June 16, 2020, the American Medical Association sent the CDC a 17-page letter with clear recommendations to update their guidelines as soon as possible to stop the collateral damage to legitimate chronic pain sufferers (see link to the AMA letter at the end of this page.)
To embark on this mission, I am seeking financial help for the surgery so that I can get stabilized and return to working full time again and continue to provide for my two girls as I always have and continue the fight to help other chronic pain and Lyme Disease patients get the medication treatment they need.
Please share this page on your social media profiles, email the link to your friends and family, and donate what you can to help me not just recover from this dire situation, but so I can also come back strong to help the thousands of other chronic pain sufferers that need a voice. You see, I have been asked to contribute to help write the legislation that will soon be proposed to the New York State legislature by the largest national activist group called ‘Don’t Punish Pain’. This is my mission and I’ve been collecting data and substantial evidence to do my part in it.
I am convinced that if I can get this surgery and get stabilized, I will be able to work full time again. But right now, I’m too worn-down coping with debilitating pain to be of much help to anyone until I can get this chance to have the reserves of energy needed to further this cause to the community I’ve pledged my commitment to. I have no disc material left in my L5 so the fusion surgery is the only hope to stop this excruciating spinal pain and get me back on the road to recovery.
It’s difficult for an independent person like me to ask for financial help. But a good friend convinced me that there’s nothing left to do but to surrender and ask for help because it will allow me to come back stronger and help many others in this same situation I’m in today. I’m hoping that reaching out finally for the help I need to bridge myself to the next surgery and the specialist in California who is self-pay, is my only chance to get the pain relief I so desperately need. My surgeon is excellent, and he has come up with a promising plan to irrigate the entire area during the surgery with an antibiotic liquid to give my spine the best chance of recovery.
Whatever amount you can donate will be greatly appreciated, no matter how small or large. Every dollar counts and your generosity will not only help me but will go a long way in helping other chronic pain sufferers who I’ll be fighting for in the NY State legislature when I recover.
Thank you so much for taking the time to read my message - and please remember to share this page on social media and with your friends and family.
------------
What Everyone Ought to Know About the Policies that Restrict Chronic Pain Patients from Access to Legitimate Medical Care
People with chronic pain from other means besides cancer, as myself who’s Lyme Disease and two failed back surgeries have resulted in the painful spine condition called Arachnoiditis, are flat out being denied treatment, even with an impeccable record and everything a patient could possibly need to adequately, and in accordance with the law get proper medication treatment. - Why is this? - Because in 2016 the Centers for Disease Control (CDC,) published the Guidelines for Prescribing Opioids for Chronic Pain that has resulted in chronic pain suffers being lumped in together with heroin users. The 2016 CDC guidelines have caused such unintended consequences to legitimate chronic pain sufferers, that on June 16, 2020, the American Medical Association sent the CDC a 17-page letter with clear recommendations to update their 2016 guidelines to stop the collateral damage currently being inflicted on chronic pain sufferers by the misuse of such guidelines.
Here is the link to the full AMA letter sent to the CDC:
https://searchlf.ama-assn.org/undefined/documentDownload?uri=%2Funstructured%2Fbinary%2Fletter%2FLETTERS%2F2020-6-16-Letter-to-Dowell-re-Opioid-Rx-Guideline.pdf
Co-organizers (2)
Danielle DeVivo
Organizer
Greenfield, NY
Barbara Price
Co-organizer