HELP EM FIGHT NEURO LYME 50th bday
Donation protected
Hello FB Friends and Family,
Hope you are all well.
I posted about my condition a few days ago on my FB page. that was very scary and made me feel so vulnerable! Thank you for the outpouring of love and support.
I have copied and pasted what I wrote below in case anyone missed it. If you want to contribute to my campaign, I would be most honored and grateful. Never easy to ask for help. Even though I am selling my home to go Germany to try and get better, I have been inundated with medical bills over the last few years. As most insurance companies do not recognize chronic lyme disease, I am left paying out of pocket and it has been astronomical trying to keep up. When i return I will need follow up care for six months as per the protocol I will be following.
Any help would be so much appreciated. Feel free to share this.
All my love,
Emily
Hello FB Friends,
I have been debating about posting this for a long time as I am not one to post things that are personal. For the last two years (really six when it all started after I had a shingles vaccine while I had mono-dumb move, I know) I have been suffering from Late Stage Three Lyme Disease, also known as Neuroborreliosis. Stage 3 is the last stage in lyme disease. It's a serious disease that if left untreated can kill you as well. I believe I had dormant lyme and my immune system took care of it until I had the vaccine when my immune system was compromised. I feel the vaccine ignited the lyme.
After debilitating, painful, acid-burning neuropathy (nerve pain) on my head and hands, severe itching, seizures, tremors, stinging sensations all over, numbness, sleeplessness, etc. and four months of traveling the states, two trips to the Mayo Clinic, one trip to Stanford, 55 doctors, etc. trying to figure out what was wrong, I learned two years ago that I have this insidious disease. They call it the Great Imitator as it mimics ALS, dementia, MS, Parkinsons, and so many other diseases. Lara Ivanović was the one who finally told me to take the Igenex test to see if it was lyme. Igenex is the world's most comprehensive, modern, scientific and sensitive test for tick-borne illnesses in the world. When I got the results I was shocked.
Lyme disease is hardly recognized by insurance companies (except in Boston). The CDC and IDSA which have ties to insurance companies (who patent the lyme test) do not want to pay for long term care for lyme patients. So they use an outdated test from 1994 on Quest or Lapcorp that only tests for 2 of the 100 bands of lyme in the US. They want you to test negative and so conventional doctors can only do so much as they have to follow CDC guidelines. They give you one month of antibiotics, not enough unless you caught it within a month of having the bite) and then leave you on your own. So many lyme patients lose their jobs, homes, relationships due to how severe lyme disease is. Many lyme patients kill themselves due to the intense suffering.
Lyme disease is in autoimmune disorder that attacks the body in a multi-systemic way. It is caused by a biting infected insect such as a tick, dust mite, spider, mosquito, bed bug, and even a sand flea. And you not only get lyme with your bite, you get co-infections like babesia, a cousin of malaria and bartonella, which is cat scratch fever. I have both of these too as well as Epstein Barr that got activated and other viruses.
Two years ago I did 6.5 months of IV antibiotics with a picc line in my arm and got better. I was in remission living life for nine months, walking 8 miles every day, laughing, having fun, making art, running my business, etc. I HAD ZERO SYMPTOMS. Then I had a hysterectomy a year ago and it all came back. Only this time the antibiotics didn't work. I became resistant. So I tried all sorts of natural therapies, changed my diet, and even did umbilical stem cells three months ago. Nothing has worked. I lost ten pounds and am five foot five. 100 pounds now. Eating but not gaining.
Because of this, I was not involved with the company this last year. It ran without me. Three pools and 50 teachers. Through it all I have been very sick. I even missed a call to be interviewed by the Today Show when I was trying to sleep one day. That had been a dream for me, to be on the show talking about teaching little kids how to swim. But the truth was I was too sick to be interviewed that day anyway.
So what now? I am going to Germany in two weeks for a new treatment. There are no guarantees for any lyme treatment, just like there are no guarantees with chemo or antibiotics. I am selling my house (but keeping the one with the pool) to make this happen as it is very expensive and I hope it will help make me feel better. It could take months afterwards to see a difference. It is risky, but I won't know until I try.
We are going to restart in early 2019 and hopefully I can be involved this time. I am extremely passionate about teaching people how to swim as well as about my love for making art. Both passions have been sidelined for now.
All I care about right now is getting better. Your health is everything. Suffering is no fun. For those of you who have a chronic illness you know what I mean and I am sorry for you too.
I am blessed to have loving friends who truly care and support me. It's hard to see people on FB looking happy and healthy, living their lives, but I am happy for those of you who are doing well. I also am very active in the lyme community and have met some of the nicest, most compassionate, warm people I have ever known. IT's time for me to come out of the closet and also use my platform to talk about the disease for awareness.
For those of you to whom I have not reached out or have been flaky with, I am so sorry. I have been trying to survive and have not been my normal, happy self. I have been private about it because I wanted to present an image of health and athleticism as the leader of my company. I didn't want people to think I am weak. I wanted people who know me to remember me as healthy, happy, fun, and excited about life.
But the truth is I am not healthy. I am very sick and pray to God I get better again quickly. I feel like I will get better, I just am not sure how it will happen. All I can do is keep trying.
Thanks to those of you who have been there for me who knew what was going on behind the scenes. I love you all so much.
For more information on lyme disease please go to www.ilads.org.
Hope you are all healthy and happy. Please wear bug spray when going outside and know that lyme disease has been found in all fifty states. It is a REAL disease and very hard to treat.
Love,
Emily
Hope you are all well.
I posted about my condition a few days ago on my FB page. that was very scary and made me feel so vulnerable! Thank you for the outpouring of love and support.
I have copied and pasted what I wrote below in case anyone missed it. If you want to contribute to my campaign, I would be most honored and grateful. Never easy to ask for help. Even though I am selling my home to go Germany to try and get better, I have been inundated with medical bills over the last few years. As most insurance companies do not recognize chronic lyme disease, I am left paying out of pocket and it has been astronomical trying to keep up. When i return I will need follow up care for six months as per the protocol I will be following.
Any help would be so much appreciated. Feel free to share this.
All my love,
Emily
Hello FB Friends,
I have been debating about posting this for a long time as I am not one to post things that are personal. For the last two years (really six when it all started after I had a shingles vaccine while I had mono-dumb move, I know) I have been suffering from Late Stage Three Lyme Disease, also known as Neuroborreliosis. Stage 3 is the last stage in lyme disease. It's a serious disease that if left untreated can kill you as well. I believe I had dormant lyme and my immune system took care of it until I had the vaccine when my immune system was compromised. I feel the vaccine ignited the lyme.
After debilitating, painful, acid-burning neuropathy (nerve pain) on my head and hands, severe itching, seizures, tremors, stinging sensations all over, numbness, sleeplessness, etc. and four months of traveling the states, two trips to the Mayo Clinic, one trip to Stanford, 55 doctors, etc. trying to figure out what was wrong, I learned two years ago that I have this insidious disease. They call it the Great Imitator as it mimics ALS, dementia, MS, Parkinsons, and so many other diseases. Lara Ivanović was the one who finally told me to take the Igenex test to see if it was lyme. Igenex is the world's most comprehensive, modern, scientific and sensitive test for tick-borne illnesses in the world. When I got the results I was shocked.
Lyme disease is hardly recognized by insurance companies (except in Boston). The CDC and IDSA which have ties to insurance companies (who patent the lyme test) do not want to pay for long term care for lyme patients. So they use an outdated test from 1994 on Quest or Lapcorp that only tests for 2 of the 100 bands of lyme in the US. They want you to test negative and so conventional doctors can only do so much as they have to follow CDC guidelines. They give you one month of antibiotics, not enough unless you caught it within a month of having the bite) and then leave you on your own. So many lyme patients lose their jobs, homes, relationships due to how severe lyme disease is. Many lyme patients kill themselves due to the intense suffering.
Lyme disease is in autoimmune disorder that attacks the body in a multi-systemic way. It is caused by a biting infected insect such as a tick, dust mite, spider, mosquito, bed bug, and even a sand flea. And you not only get lyme with your bite, you get co-infections like babesia, a cousin of malaria and bartonella, which is cat scratch fever. I have both of these too as well as Epstein Barr that got activated and other viruses.
Two years ago I did 6.5 months of IV antibiotics with a picc line in my arm and got better. I was in remission living life for nine months, walking 8 miles every day, laughing, having fun, making art, running my business, etc. I HAD ZERO SYMPTOMS. Then I had a hysterectomy a year ago and it all came back. Only this time the antibiotics didn't work. I became resistant. So I tried all sorts of natural therapies, changed my diet, and even did umbilical stem cells three months ago. Nothing has worked. I lost ten pounds and am five foot five. 100 pounds now. Eating but not gaining.
Because of this, I was not involved with the company this last year. It ran without me. Three pools and 50 teachers. Through it all I have been very sick. I even missed a call to be interviewed by the Today Show when I was trying to sleep one day. That had been a dream for me, to be on the show talking about teaching little kids how to swim. But the truth was I was too sick to be interviewed that day anyway.
So what now? I am going to Germany in two weeks for a new treatment. There are no guarantees for any lyme treatment, just like there are no guarantees with chemo or antibiotics. I am selling my house (but keeping the one with the pool) to make this happen as it is very expensive and I hope it will help make me feel better. It could take months afterwards to see a difference. It is risky, but I won't know until I try.
We are going to restart in early 2019 and hopefully I can be involved this time. I am extremely passionate about teaching people how to swim as well as about my love for making art. Both passions have been sidelined for now.
All I care about right now is getting better. Your health is everything. Suffering is no fun. For those of you who have a chronic illness you know what I mean and I am sorry for you too.
I am blessed to have loving friends who truly care and support me. It's hard to see people on FB looking happy and healthy, living their lives, but I am happy for those of you who are doing well. I also am very active in the lyme community and have met some of the nicest, most compassionate, warm people I have ever known. IT's time for me to come out of the closet and also use my platform to talk about the disease for awareness.
For those of you to whom I have not reached out or have been flaky with, I am so sorry. I have been trying to survive and have not been my normal, happy self. I have been private about it because I wanted to present an image of health and athleticism as the leader of my company. I didn't want people to think I am weak. I wanted people who know me to remember me as healthy, happy, fun, and excited about life.
But the truth is I am not healthy. I am very sick and pray to God I get better again quickly. I feel like I will get better, I just am not sure how it will happen. All I can do is keep trying.
Thanks to those of you who have been there for me who knew what was going on behind the scenes. I love you all so much.
For more information on lyme disease please go to www.ilads.org.
Hope you are all healthy and happy. Please wear bug spray when going outside and know that lyme disease has been found in all fifty states. It is a REAL disease and very hard to treat.
Love,
Emily
Organizer
Emily Cohen
Organizer
Los Angeles, CA
