It will soon be 1 year since I created my gofundme page to help raise money for my medical expenses associated with my late stage Neurological Lyme Disease. I greatly appreciate everyone who has supported me, whether it was contributing to my fund or raising awareness.
In September of 2012, I fell and fractured my leg severely. I needed an operation to properly align the fractured bone, but the operation was cancelled due to the surgeon deciding that the risks of the surgery would outweigh the benefits in my overall condition. So, I spent over a month in a long-term rehab facility for occupational and physical therapy to learn how to adapt my life to being in a wheel chair and also to gain the strength to transfer myself from bed to wheel chair, toilet, shower chair, etc. This was extremely challenging, but eventually I was able to return home with some home modifications. While I was in the rehab facility, my grandfather died and I had to attend his funeral the day after I was discharged from the facility. Needless to say, I was both mentally and physically exhausted.
In February 2013, Fuzion Fitness sponsored a fundraiser for me, "Moving Towards a Cure." The event included a Burpeethon and a Zumbathon and participants were asked to obtain sponsors or pay a fee the day of the event. All proceeds went to help me with my medical expenses and a portion went to several organizations to help those with chronic Lyme Disease and to other individuals struggling to pay for their treatment for chronic Lyme Disease. The event also raised awareness about Lyme Disease. Douglas Fearn, President of the Southeastern PA Lyme Disease Association, did a presentation which was open to participants and also the general public about the basics of Lyme Disease. Eric Huck, President of the Harrisburg Area Lyme Disease Support Group was also present with a display of Lyme Disease educational materials. The Bryan Stevenson Band provided entertainment. Several organizations donated items to be raffled. Lyme awareness merchandise was available for purchase. Free refreshments and prizes were provided to all participants. Reverend John Barlow did the opening prayer. Overall, the event was a success and raised about $1,200.
Currently, I am without treatment. My husband and I used the equity in our home to pay for 5 months of IV antibiotic treatment for me and unfortunately, I went into adrenal failure and nearly died. I take medication now for my adrenal failure, but I struggle with adrenal gland issues everyday in addition to the debilitating symptoms of my advanced Lyme Disease.
I fell again recently, but fortunately this time I did not fracture anything. I sustained a concussion, a sprained neck, and a strained lower back. The fall did flare up my disease more however. I now have more extreme issues related to pain and have been experimenting with several different pain medications with the help of my primary care physician, but none control the pain. I am bed bound most days due to extreme pain, fatigue, and flu-like symptoms. I also have tremors, jerking movements of the body, short-term memory problems, mood changes, heart problems, digestive problems and more. I suffer from depression directly related to the everyday struggles I face with this disease.
I have a 2 year old son who was diagnosed with Congenital Lyme Disease, however he does not have any symptoms at this time. He does have to witness his mommy being very debilitated, but he does not know any different. My heart is broken that I have to miss out on spending time with my son due to the debilitation of this disease. However, there are days where I do really push myself physically to do mommy things with my son. I want him to have some good memories with me should I die from this disease. I don't want him to only remember me as being sick.
I am currently able to walk short distances with a walker or a cane. I still use my wheel chair also. The fractured leg healed, but healed out of alignment, so this makes walking more challenging. I do need to try treatment again or I will continue to get worse, however our finances will not allow for any costly treatment. I made a phone call to the United Lyme Disease Coalition and explained my situation and the President of the organization arranged for me to see a Lyme Literate Medical Doctor (LLMD) who is located nearby, trained under one of the best LLMDs, and is reasonably priced. I am scheduled for my first appointment with this doctor in July.
I would greatly appreciate donations in order to see the LLMD in July and participate in treatment. I need help to continue to battle this disease with the hope that treatment will improve my health and give me a quality of life. Please consider joining me in this battle through contributions or sharing my page with others who would like to contribute. I would like to continue raising awareness about this disease to prevent others from getting ill and also helping those who have the disease cope with the everyday struggles. Your contributions will help me help others.
I would like to thank you with all my heart for taking the time to read my story and my update. May God Bless You.
Yes, another much needed update. Please, I am getting sicker by the day. I need help desperately. So do many others and my heart breaks everyday that we are being ignored and allowed to die if we are not fortunate enough to have an over abundance of money to pay for life-saving treatment. Even if those of us who had a savings, equity in our homes, credit cards, some assets, retirement plans, and anything else I may be missing because we worked very hard, our entire financial resources have been expended trying to pay for treatment for this disease which insurance companies refuse to pay for based on current Infectious Disease Society of America (IDSA) guidelines. It is completely devastating to watch everything you have worked so hard for to obtain over many years, to diminish down to nothing in a matter of a few months to a few years depending on your financial status. Many lose their homes and now my family is in danger of losing our home.
The reason the disease is so costly to treat in the late stages, is because it may have spread to the brain, nervous system and essentially any other system in the body like the endocrine system, gastrointestinal system, and the cardiovascular system, for example. The disease at this stage requires long-term treatment with the most successful treatment being the combination of traditional medicine and integrative medicine. Unfortunately the reasons why the disease often progresses to these late stages is because many times people are not aware they are bitten, the routine blood test for Lyme Disease is 60% inaccurate and the disease mimics so many other diseases, that it is very difficult for a physician who is not thoroughly educated about Lyme Disease to properly diagnose a patient. So, patients go without a diagnosis for their disease or with a misdiagnosis for many years before discovering he or she has Lyme Disease. In my case, I was misdiagnosed with Fibromyalgia and believed that this was what I had, until my health declined so much that I went on and did further research on my overwhelming symptoms and all correlated to late stage or advanced Lyme Disease. Just to add, about 50% of individuals diagnosed with Fibromyalgia actually have Lyme Disease. All Fibromyalgia refers to is muscle pain which is really a symptom of a disease.
By the time a doctor diagnosed me with late stage Lyme Disease, 2 years had already gone by allowing the disease which is caused by bacteria and in my case several different kinds of bacteria known as co-infections, to ravage my body. When I refer to co-infections, I am referring to other diseases the tick carries that can be transmitted to a human all in 1 single bite. I have all the diseases. The more Tick-Borne Diseases you have, the generally more ill you are and the more difficult it is to treat.
An enormous change needs to happen to save the lives of the many already suffering from the advanced state of this illness and to prevent others from becoming ill from a disease which could be prevented or treated effectively by being caught early. Lyme Disease reached epidemic proportions and is only expected to continue to get worse. Please consider signing this petition to make the Infectious Disease Society of America (IDSA) change their guidelines which are outdated in order to require insurance companies to pay for treatment for Advanced/Chronic Lyme Disease. This change will save the lives of many and allow doctors to make treatment decisions, not insurance companies. It would also put a stop to doctors who are trying to treat this complex disease from getting their licenses to practice suspended or revoked by going against IDSA guidelines in a much needed attempt to put the lives of their patients first. Please sign this petition by February 10, 2013 before more people die...
Please help end the suffering. Donate to my cause and I promise a portion of the proceeds will go to help other individuals who I know personally who are suffering like I am.
I am on the phone, e-mail, and/or Facebook everyday and sometimes up all night helping others who are suffering with this disease along with their family members on how to cope with a loved one who is suffering. I am very ill, but will continue to use my knowledge and my skills acquired from my education as a Master's Social Worker to continue to help as long as God allows me the strength to do so. Please consider donating not only to help me get better so I can continue helping others by offering my personal time and knowledge, but also to give to others who desperately need money also to get treatment for this disease and not allow any of us to die. Please find it in your hearts. My passion is for helping others, but I am begging for help also to battle for my life. Thank you as always.
Hello, I greatly appreciate you taking the time to read my updates. A Lyme Disease Awareness Fundraiser to help pay my medical bills associated with Advanced Neurological Lyme Disease and to promote Lyme Disease Awareness is officially scheduled for February 16, 2013 from 1-4:30 pm at the Quality Inn in Lebanon, PA. The major component of this event is to educate the community about Lyme Disease to prevent individuals from becoming ill and save their lives and the life of their family and friends. A portion of the proceeds will go to the Lyme Disease United Coalition (LDUC) and the Harrisburg Area Lyme Disease Support Group. The President of the Lyme Disease Association of Southern PA is going to be present to do a presentation on Lyme Disease and give out free booklets explaining the basics of Lyme Disease. The Harrisburg Area Lyme Disease Support Group is going to be present with their display and free educational materials pertaining to Lyme Disease. There is also going to be live entertainment provided by the Bryan Stevenson Band, free gifts to all who attend as supplies last, raffles, refreshments, and beautiful Lyme Disease Awareness merchandise for sale for participants who wish to continue to support those suffering with Chronic Lyme Disease and to promote Lyme Disease Awareness so the word gets out to as many people as possible to avoid people from getting ill and/or dying. The event is sponsored by Fuzion Fitness, Lebanon, Pa.
Participants are asked to obtain sponsorship to do as many "Burpees" as they can in a 1 hour period. A Burpee is a type of exercise. There will also be a Zumba Party following the "Burpeethon" and participants of the Zumba Party are kindly asked to pay a $5.00 cover charge to support donations. The event is also open to the general public who do not wish to participate in the physical activity portion, but want to come and enjoy the live band, refreshments, raffles, gifts, and Lyme Awareness information and merchandise. Anyone wishing to participate or attend are kindly asked to RSVP by February 2, 2013 to ensure there will be enough food, seating, and gifts. For more information and details, please call Jeff at 717-273-3619 or Travis at 717-273-3348. You may also e-mail at firstname.lastname@example.org.
The Lyme Disease Awareness of this event is the primary focus as Lyme Disease has become an epidemic and Pennsylvania is now the number one state in the U.S. for reported cases of Lyme Disease. If a victim of Lyme Disease is lucky and happens to have a physician who is knowledgeable about Lyme Disease, the patient may get the proper treatment right away and therefore is cured. If the disease is not treated right away, it becomes chronic and there is no cure. Also, some physicians who are at least knowledgeable about the symptoms of Lyme Disease, but are not educated about the inaccuracy of testing, often miss cases of Lyme Disease. The basic blood test for Lyme Disease is a Titer test which looks for antibodies your body produces in response to the Lyme bacteria. This standard test is what most physicians use and it is about 60% inaccurate. In other words, your test may be negative for Lyme Disease, but you may still have Lyme Disease. So, if a patient has a negative test result and the doctor tells them they don't have Lyme Disease, the patient's health continues to deteriorate and they start to seek out other doctors in a search to find out what is the cause of all their symptoms. This is how a victim gets misdiagnosed and appropriate treatment gets delayed allowing the Lyme bacteria the chance to cause destruction and even permanent damage.
Many physicians are not Lyme literate and often miss the early signs of the disease and therefore people go undiagnosed or even misdiagnosed for years until they or a physician finally discovers it is Lyme Disease. By that time, years have gone by with the illness, there is no cure and it is very difficult and costly to treat. For those who can afford treatment, the goal of the treatment is to attempt to keep the disease "under control" and prevent further damage caused by the disease. Many physicians who treat advanced stages of the disease, often can lose their licenses to practice medicine because treatment for advanced, chronic Lyme is considered experimental and controversial even though there is living evidence that treatment does help restore health and prevent further damage caused by the disease. Therefore, people can live a better quality of life and a longer life.
Part of the issue surrounding the controversy treating advanced, Chronic Lyme Disease has to do with the two schools of thought. One from ILADS and one from the IDSA. ILADS recognizes there is a chronic infection which persists if not caught and treated early and states that long-term, open ended treatment with antibiotics is necessary. The IDSA insists there is no such thing as Chronic Lyme Disease and long-term antibiotics are of no benefit. There have been attempts even by other physicians to get the IDSA to change their guidelines which in turn would allow individuals who are ill with a life-threatening disease to receive appropriate medical treatment paid for by health insurance, but certain members of the IDSA refuse to recognize the evidence that Chronic Lyme Disease does exist and are allowing innocent people which include children to suffer and die. This is an outrage and it is happening right here in the U.S. One theory about why the IDSA refuses to change its guidelines, is that if the guidelines were changed and insurance companies would have to then pay for treatment, it would be very costly and insurance companies simply do not want to pay that kind of money. When I refer to treatment, I am referring to IV antibiotic treatment which is an effective way to treat advanced neurological Lyme Disease which is what I have and many others. IV antibiotic treatment can cost anywhere from $4-$7,000 per month including supplies to maintain a PICC line and supplies that are necessary to administer the IV. Chronic Lyme Disease sufferers with neurological involvement need strong IV antibiotic treatment and have to pay out of pocket for it or die if they cannot afford it. Speaking for myself, my husband and I have used up all of our savings, maxed out several credit cards and now used a home equity loan to pay for treatment up until this point and now we are broke. Because my disease had went so many years untreated do to misdiagnosis, I would require years of treatment, but can no longer afford it. I fear I will die and my son will be left without a mother.
For anyone interested in learning more about Chronic Lyme Disease, I highly recommend watching the award-winning documentary, "Under Our Skin". It can be purchased from underourskin.com, Netflix, and Amazon. It is well worth the money and can save peoples' lives.
I have a Master's Degree in Social Work and have a passion for helping others. Before I became ill and disabled by Lyme Disease, I made change happen in peoples' lives through my work which was driven by my determination to defeat injustice in our society. I am still helping others who are sufferers of this disease and their families as I will not allow sickness to interfere with the abilities I still possess to help others.
I ask you to please find it in your heart to donate to help pay my medical bills associated with Advanced Neurological Lyme Disease. This is not only to allow me the opportunity to regain health, but also when I regain health, I will help others even more with this disease and promote awareness so others do not have to live this nightmare. I love to help others, please help save my life so I can continue to improve the life of others. May this information presented in this message also help to educate and save the lives of others. Thank you for taking the time to read this and for your kind consideration.
I apologize that I have not updated in a while, so here is a little update...I received 5 months of IV antibiotic treatment and could no longer afford it so I had the PICC line removed. Since then, I fell in September and fractured my leg severely. I spent a month in a rehab for occupational and physical therapy after one week in the hospital for the fall. This trauma flared up my Lyme Disease severely. I am now in a wheelchair. My leg may not ever be back to the way it was prior to the injury. I am completely house bound. Too ill to do much of anything. I desperately need treatment. I received a free evaluation from a doctor who practices all natural medicine. She determined I am among the most ill she has ever seen. She is fairly reasonably priced, so I am trying to do what I can in terms of following her treatment recommendations which mostly require nutrition. It still costs money and my husband lost his job in November. Thankfully Fuzion Fitness in Lebanon, PA is sponsoring a fundraiser for me to help pay for my treatment on February 2, 2013. Any help would be so much appreciated at this time. My son is at the age where he is very active and needs his mommy and it breaks my heart that I cannot physically be there for him to do regular mommy things. My son needs me. Please consider helping. May God Bless You.
My name is Teri and I am a 37 year old woman. I have been suffering from Chronic Lyme Disease for over 5 years. Because I was not diagnosed early enough, the disease has spread to my brain and central nervous system. This photo was taken when I arrived back home from a 4 month hospital stay for a high risk pregnancy due to my health condition. I had improved slightly from being in the hospital by receiving TPN (nutrition) in a PICC line. This was over a year ago and since then, I have declined. Fortunately, my baby appears healthy so far.
I live each day with nerve pain all over my body. It's like having a bad tooth ache, but imagine it all over your body. My muscles and joints hurt, I have heart problems, gastrointestinal problems, gynecological problems, immune system problems, anemia and low red blood cell count, nerve damage, endocrine problems and more. I feel sick everyday and have a difficult time taking care of myself.I take more pills than I can manage. I worry everyday that I will die.
I am currently seeing a Lyme specialist in Washington, D.C. He has determined that I have neurological Lyme Disease plus co-infections and need IV antibiotics. I have a PICC line in my arm and administer IV antibiotics to myself at home.Insurance does not cover the antibiotics and the supplies. We have taken out a loan to pay for it. The treatment has cost over $7,000 per month.It's been five months now and I only have enough money for 2 more treatments. Some people need IV treatment for years, but cannot afford it. Those that can afford it, get better. If I do not get treated appropriately, the bacteria will keep reproducing causing damage which could kill me.
Any donation you could make would make a huge difference for my husband, my one-year old son and me. Thank you.
Teri, my wife and I are sorry to see the pain and suffering you are going through. We are praying for you. Also I wanted to offer my sincere apology for my treatment of you 20 years ago.
God Bless and get well soon,
Michael S. Snyder II
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