Please help my son get well
Donation protected
My name is Pam West and I am writing this on behalf of my 24 year old son Alex who has been ill for 13 years, progressively worsening, and home-bound for over 5 years, only able to leave the house for necessary doctor appointments and testing. The diseases my son suffers from are life threatening. He is confined to his bed or lift chair for most of the day. It is difficult to ask for help publicly but I have no other way to try and help Alex get well.
Alex was misdiagnosed for twelve years. During this time we saw over 60 different doctors and he went through an exhaustive number of tests. I repeatedly asked if he could have lyme disease and each time I was told no. Finally in 2012 he was diagnosed with Lyme disease, Rocky Mountain spotted fever, Babesia and Bartonella. Due to the many long years Alex went undiagnosed these diseases have ravaged his body.
He began treatment immediately following the diagnosis of Lyme disease and the coninfections. Alex had a PICC line placed in his arm and received IV Rocephin daily along with two oral antibiotics for five months, in addition to the few other supporting treatments that we could afford. Rather than showing improvement he continued to deteriorate until the PICC line area rapidly became infected, leaving Alex with severe "burns" covering most of his upper arm that did not heal for many months. We tried numerous other mainstream and alternative treatments but none were successful and his health continued to decline.
After a few years of Alex's health continuing to worsen despite now finally knowing what was wrong, we were able to find the right mix of treatments that his body could tolerate. Miraculously, for the first time in over a decade, he was getting better instead of worse. He began to make significant progress both physically and neurologically and it was truly amazing. However, heartbreakingly, this improvement was short lived and Alex's health began to decline again, tragically leaving him even more disabled than he was before. After desperately trying to find the cause, Alex was diagnosed with Biotoxin illness or CIRS-Chronic Inflammatory Response Syndrome-in 2014.
Now after being ill for over 15 years he finally has the chance to get well. However, the treatment is very expensive and insurance continues to refuse to help us with almost all of the medical expenses. It is heartbreaking as his Mother to see him suffering so much for so long. I have tried my hardest to help him get well but these treatments are out of reach. I desperately need help to save my son from these illnesses.
Alex is trying so hard not to give up and to get well. He wants to help other people who are severely ill without the resources to get well. Before being crippled by the illnesses he used to like to volunteer with Mass. Special Olympics and other programs for kids with disabilities. He also volunteered at various animal shelters to help care for the animals there. He liked to play guitar even though it was painful and he didn't understand why. He graduated high school early and went to college on a full scholarship despite his health decaying rapidly, but had to return home after only half a year because he could no longer care for himself by that point. He enjoyed nature photography and reading. In his words he: "would really like to have the chance to be alive again, even just for a little while."
Thank you so much for taking the time to read Alex’s story. We understand not everyone is in a position to donate and we are so grateful for any help we receive. But if you can, we ask that you please share this page in the hopes that it may help prevent someone from being misdiagnosed or help someone who has been misdiagnosed avoid suffering as Alex has.
Ongoing Medical treatments Alex needs to get well:
-Doctor visits for Biotoxin illness and late stage Lyme disease: $375 to $600 per visit.-I have not been able to afford to take Alex anywhere near as often as the doctors have recommended and he is months overdue for an appointment with his primary Lyme disease & CIRS specialist.
-IV Vitamin C and Detoxification IV's: $265 per treatment.-Ideally weekly, these are important because Alex's body is too weak and damaged to properly filter out toxins.
-Herbal treatments for Lyme disease and coinfections: $70-110 monthly.-Continuing treatment for these diseases as well as Immune system support etc.
-Compounded Cholestyramine: $250.00 monthly.-For Biotoxin illness/CIRS.
-VIP (Vasoactive Intestinal Peptide) Spray: $200 to $500 (depending on tolerance) monthly.-For Biotoxin illness/CIRS.
-Glutathione (through nebulizer): $300 monthly.-Ideally 1-2 times per day. Glutathione is the most critical antioxidant produced by your body. Because of his illness Alex's body not only struggles to produce it, but also needs vastly greater quantities due to all the toxins and damage from his illness. Unfortunately we haven't been able to afford this at all since the insurance company stopped paying for it.
-Nutritional supplements: $250 to $300 monthly.-For severe nutritional deficiencies.
Unfortunately, these are only some of the essential things Alex needs to get well. Co-pays for the partially covered medicines and blood tests, out of pocket expenses for crucial tests, and meal replacement shakes because Alex cannot chew most foods are just a few more examples. All of this is in addition to the less crucial treatments, supplements, and tests that could help my son suffer less pain. Despite my very best efforts I can't provide him with more than a small amount of the care he needs to get better.
Extra details and information:
Alex's symptoms/condition: Alex suffers intensely from CIRS and the Lyme/coinfections. He has constant and severe migratory joint, muscle, and nerve pain across his entire body each day. Every small movement, even breathing, is painful. The vagus nerve has been affected and he has trouble with balance, dizziness, constant nausea and daily migraines. He suffers from frequent, painful tremors and partial seizures. He has trouble breathing and suffers serious cardiac symptoms. Due to the neurological damage he has severe hyperacusis, causing normal sounds to be painfully loud and disorientating. His adrenal glands are in a state of failure due to the constant stress and pain for so many years without reprieve. His endocrine system is disrupted causing widespread issues. Due to the long term damage to his digestive system he has developed multiple food allergies and can only tolerate a limited selection of organic foods and specialized nutritional supplements. Even these are very difficult for him to eat due to nausea. His jaw (TMJ) has been damaged by the Lyme disease attacking the joint, leaving him only able to eat soups or soft/blended foods. The blood brain barrier has been drastically compromised resulting in severe multiple chemical sensitivities as well as other symptoms. Organ failure, Von Willebrand syndrome, cancer, and other autoimmune diseases are much more likely to develop.
Though the physical pain and discomfort is enormous the hardest part for Alex is losing his cognitive ability. Due to toxic encephalopathy, his brain being poisoned by the neurotoxins and biotoxins from these illnesses, he struggles against neurological symptoms that leave him cognitively disabled. Swelling of the cerebellum, shrinkage of the caudate, and changes in the frontal lobe of the brain are all part of the disease process. Memory loss, confusion and "brain fog", difficulty processing information and understanding people talking. Reading just a few sentences is very difficult for him and he has not been able to read books for years. Worst of all, because just speaking is so painful and difficult Alex has not been able to have any friends for a few years now. It is very hard as his mother to see him suffering so much while so isolated by these diseases.
I know this may feel like an overwhelmingly large symptom list but sadly this is only a summary of the symptoms Alex suffers from on a daily basis. These diseases truly are overwhelming in every way.
Financial situation/Medical expenses & insurance: I would not be asking for help unless I had done everything I possibly could to minimize expenses and afford alex's treatments. Our clothes are all second hand, we have never had cable TV, the heat does not go above 60 in the winter etc. I have been a single parent since 2001 and have struggled to support myself and my children. There are no relatives to help with medical expenses. For thirteen years I worked a part time custodial position six days a week while also working a full time job. In 2013 I was finally forced to resign from my secondary job because I could not care for Alex while working so many hours. Any money donated will be used solely to help with medical expenses so Alex can get better.
Although I pay over $7,000 a year for health insurance a majority of his care is not covered at all, with only a few things covered partially. The health insurance refuses to help pay for prescription medicines and other "mainstream" treatments and tests that technically should be covered. Unfortunately, our situation in this regard is not unique: many people who are severely ill with long term Lyme disease and CIRS face this same struggle and are forced to try to pay for most, if not all, of their medical expenses out of pocket. The fact that these life threatening diseases are extremely complicated and expensive to treat only makes that so much more difficult. Thankfully, legislation recently passed in Massachusetts directing insurance companies to pay for long term antibiotic treatment for chronic Lyme disease (although of course some have found loopholes to still deny sick people). This is a great step towards helping some with Lyme disease continue fighting to get better. Sadly, because Alex went misdiagnosed and untreated for so long and his body sustained such massive, widespread damage-and because he also has CIRS-he is unable to take any antibiotics (as we mentioned before when he did try antibiotics they made him vastly more sick and he nearly died as a result).
Information about CIRS and Lyme disease:
CIRS/Biotoxin illness:
http://www.survivingmold.com/news/2014/12/what-is-cirs/
http://biotoxinjourney.com/areyoumoldy/#Symptoms
http://biotoxinwars.blogspot.com/p/biotoxin-illness.html
https://www.survivingmold.com/docs/biotoxinpathwayritchieshoemakermd.pdf
Lyme Disease:
http://www.ilads.org/lyme/about-lyme.php
http://www.childrenslymenetwork.org/children-lyme/lyme-disease-overview/
https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
Alex was misdiagnosed for twelve years. During this time we saw over 60 different doctors and he went through an exhaustive number of tests. I repeatedly asked if he could have lyme disease and each time I was told no. Finally in 2012 he was diagnosed with Lyme disease, Rocky Mountain spotted fever, Babesia and Bartonella. Due to the many long years Alex went undiagnosed these diseases have ravaged his body.
He began treatment immediately following the diagnosis of Lyme disease and the coninfections. Alex had a PICC line placed in his arm and received IV Rocephin daily along with two oral antibiotics for five months, in addition to the few other supporting treatments that we could afford. Rather than showing improvement he continued to deteriorate until the PICC line area rapidly became infected, leaving Alex with severe "burns" covering most of his upper arm that did not heal for many months. We tried numerous other mainstream and alternative treatments but none were successful and his health continued to decline.
After a few years of Alex's health continuing to worsen despite now finally knowing what was wrong, we were able to find the right mix of treatments that his body could tolerate. Miraculously, for the first time in over a decade, he was getting better instead of worse. He began to make significant progress both physically and neurologically and it was truly amazing. However, heartbreakingly, this improvement was short lived and Alex's health began to decline again, tragically leaving him even more disabled than he was before. After desperately trying to find the cause, Alex was diagnosed with Biotoxin illness or CIRS-Chronic Inflammatory Response Syndrome-in 2014.
Now after being ill for over 15 years he finally has the chance to get well. However, the treatment is very expensive and insurance continues to refuse to help us with almost all of the medical expenses. It is heartbreaking as his Mother to see him suffering so much for so long. I have tried my hardest to help him get well but these treatments are out of reach. I desperately need help to save my son from these illnesses.
Alex is trying so hard not to give up and to get well. He wants to help other people who are severely ill without the resources to get well. Before being crippled by the illnesses he used to like to volunteer with Mass. Special Olympics and other programs for kids with disabilities. He also volunteered at various animal shelters to help care for the animals there. He liked to play guitar even though it was painful and he didn't understand why. He graduated high school early and went to college on a full scholarship despite his health decaying rapidly, but had to return home after only half a year because he could no longer care for himself by that point. He enjoyed nature photography and reading. In his words he: "would really like to have the chance to be alive again, even just for a little while."
Thank you so much for taking the time to read Alex’s story. We understand not everyone is in a position to donate and we are so grateful for any help we receive. But if you can, we ask that you please share this page in the hopes that it may help prevent someone from being misdiagnosed or help someone who has been misdiagnosed avoid suffering as Alex has.
Ongoing Medical treatments Alex needs to get well:
-Doctor visits for Biotoxin illness and late stage Lyme disease: $375 to $600 per visit.-I have not been able to afford to take Alex anywhere near as often as the doctors have recommended and he is months overdue for an appointment with his primary Lyme disease & CIRS specialist.
-IV Vitamin C and Detoxification IV's: $265 per treatment.-Ideally weekly, these are important because Alex's body is too weak and damaged to properly filter out toxins.
-Herbal treatments for Lyme disease and coinfections: $70-110 monthly.-Continuing treatment for these diseases as well as Immune system support etc.
-Compounded Cholestyramine: $250.00 monthly.-For Biotoxin illness/CIRS.
-VIP (Vasoactive Intestinal Peptide) Spray: $200 to $500 (depending on tolerance) monthly.-For Biotoxin illness/CIRS.
-Glutathione (through nebulizer): $300 monthly.-Ideally 1-2 times per day. Glutathione is the most critical antioxidant produced by your body. Because of his illness Alex's body not only struggles to produce it, but also needs vastly greater quantities due to all the toxins and damage from his illness. Unfortunately we haven't been able to afford this at all since the insurance company stopped paying for it.
-Nutritional supplements: $250 to $300 monthly.-For severe nutritional deficiencies.
Unfortunately, these are only some of the essential things Alex needs to get well. Co-pays for the partially covered medicines and blood tests, out of pocket expenses for crucial tests, and meal replacement shakes because Alex cannot chew most foods are just a few more examples. All of this is in addition to the less crucial treatments, supplements, and tests that could help my son suffer less pain. Despite my very best efforts I can't provide him with more than a small amount of the care he needs to get better.
Extra details and information:
Alex's symptoms/condition: Alex suffers intensely from CIRS and the Lyme/coinfections. He has constant and severe migratory joint, muscle, and nerve pain across his entire body each day. Every small movement, even breathing, is painful. The vagus nerve has been affected and he has trouble with balance, dizziness, constant nausea and daily migraines. He suffers from frequent, painful tremors and partial seizures. He has trouble breathing and suffers serious cardiac symptoms. Due to the neurological damage he has severe hyperacusis, causing normal sounds to be painfully loud and disorientating. His adrenal glands are in a state of failure due to the constant stress and pain for so many years without reprieve. His endocrine system is disrupted causing widespread issues. Due to the long term damage to his digestive system he has developed multiple food allergies and can only tolerate a limited selection of organic foods and specialized nutritional supplements. Even these are very difficult for him to eat due to nausea. His jaw (TMJ) has been damaged by the Lyme disease attacking the joint, leaving him only able to eat soups or soft/blended foods. The blood brain barrier has been drastically compromised resulting in severe multiple chemical sensitivities as well as other symptoms. Organ failure, Von Willebrand syndrome, cancer, and other autoimmune diseases are much more likely to develop.
Though the physical pain and discomfort is enormous the hardest part for Alex is losing his cognitive ability. Due to toxic encephalopathy, his brain being poisoned by the neurotoxins and biotoxins from these illnesses, he struggles against neurological symptoms that leave him cognitively disabled. Swelling of the cerebellum, shrinkage of the caudate, and changes in the frontal lobe of the brain are all part of the disease process. Memory loss, confusion and "brain fog", difficulty processing information and understanding people talking. Reading just a few sentences is very difficult for him and he has not been able to read books for years. Worst of all, because just speaking is so painful and difficult Alex has not been able to have any friends for a few years now. It is very hard as his mother to see him suffering so much while so isolated by these diseases.
I know this may feel like an overwhelmingly large symptom list but sadly this is only a summary of the symptoms Alex suffers from on a daily basis. These diseases truly are overwhelming in every way.
Financial situation/Medical expenses & insurance: I would not be asking for help unless I had done everything I possibly could to minimize expenses and afford alex's treatments. Our clothes are all second hand, we have never had cable TV, the heat does not go above 60 in the winter etc. I have been a single parent since 2001 and have struggled to support myself and my children. There are no relatives to help with medical expenses. For thirteen years I worked a part time custodial position six days a week while also working a full time job. In 2013 I was finally forced to resign from my secondary job because I could not care for Alex while working so many hours. Any money donated will be used solely to help with medical expenses so Alex can get better.
Although I pay over $7,000 a year for health insurance a majority of his care is not covered at all, with only a few things covered partially. The health insurance refuses to help pay for prescription medicines and other "mainstream" treatments and tests that technically should be covered. Unfortunately, our situation in this regard is not unique: many people who are severely ill with long term Lyme disease and CIRS face this same struggle and are forced to try to pay for most, if not all, of their medical expenses out of pocket. The fact that these life threatening diseases are extremely complicated and expensive to treat only makes that so much more difficult. Thankfully, legislation recently passed in Massachusetts directing insurance companies to pay for long term antibiotic treatment for chronic Lyme disease (although of course some have found loopholes to still deny sick people). This is a great step towards helping some with Lyme disease continue fighting to get better. Sadly, because Alex went misdiagnosed and untreated for so long and his body sustained such massive, widespread damage-and because he also has CIRS-he is unable to take any antibiotics (as we mentioned before when he did try antibiotics they made him vastly more sick and he nearly died as a result).
Information about CIRS and Lyme disease:
CIRS/Biotoxin illness:
http://www.survivingmold.com/news/2014/12/what-is-cirs/
http://biotoxinjourney.com/areyoumoldy/#Symptoms
http://biotoxinwars.blogspot.com/p/biotoxin-illness.html
https://www.survivingmold.com/docs/biotoxinpathwayritchieshoemakermd.pdf
Lyme Disease:
http://www.ilads.org/lyme/about-lyme.php
http://www.childrenslymenetwork.org/children-lyme/lyme-disease-overview/
https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
Organizer
Pam West
Organizer
Norton, MA
