Lyme Disease Support for Medical Bills
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.
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.
My Warmest Regards,
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...
Thank you and any contributions to my fund are welcomed and appreciated more than any words could describe.
My Warmest Regards,
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.