Nancy's Lyme Disease Fund
$160 raised
3% of $5k goal
6 contributors
5 Years running
After 3 years of declining health, our mom was recently diagnosed with Lyme Disease in May 2013. Please help our mom fight this horrible disease! Every day she has to wait to be able to afford treatment is one more day she gets worse. Read her story below
A letter from Nancy.
Dear friends, family and supporters. This is one of the hardest times in my life and the toughest things I have ever had to do in my 54 years on the planet. I want to thank you in advance for reading this.
It all started three years ago, when I began having health issues. At the time, I was treated for hypothyroid and food allergies which I believed to be at the core of my fatigue and lingering auto-immune problems. However, I progressively became more ill and in August 2012 I was hit hard with some devastating symptoms that changed my entire life. I was no longer able to work due to the insomnia and fatigue and other horrible symptoms I was feeling. I discussed these symptoms with doctor after doctor and no one could pin point what was wrong with me, prescribing me different medicines that didn’t work. I researched and researched and took every measure possible to try to fight off whatever this illness was, all to no avail and growing weaker and sicker every day. I used any money I had left trying to fight this and could no longer afford basic necessities until I was left with no other choice than to leave my home state of Indiana and move to Atlanta, GA with my daughter Stacy (she was the best person to help me at this time) just as my son Drew was going into his senior year of high school and my son Ethan, a senior at IU.
In April 2013, I came across some research that lead me to believe that this illness could possibly be Lyme Disease, so as of May 2013 I was finally tested through IgeneX Labs and found out I indeed have Lyme Disease.
I want to be candid and open so you know the reality of this- the heart break-the losses financially, socially, people not understanding, feeling alone and the isolation. Since I had to move, I rarely get to see my sons and miss them terribly, the sadness of not being able to be involved in their lives in some frequent manner surely will take a toll. I fear I won’t be here for my children and it haunts me. Being unable to work is devastating as I cannot afford to see them or pay the costs associated with fighting this horrible disease. My heart is broken and I have lost everything. I try to be strong, but the pain, physically and emotionally, is grueling many days. This is my new reality and the world looks different now.
If you were like me, you probably have little to no idea about how debilitating this disease can be. Lyme disease is on the rise in all parts of the country bringing people to their knees. Estimated reports state there are 300,000 cases yearly of Lyme being a more accurate number now since many diagnoses go under the CDC’s radar. States not known for Lyme have Lyme.
Lyme bacteria borrelia can be spread through many vectors such as fleas, mosquitoes, spiders, and of course ticks. The presentation of the disease is being found to vary and carry nasty co-infections (Babesia, Bartonella and others) depending on the state you live in.
Some prestigious medical communities, the CDC and doctors, are in controversy on how to treat Lyme as well as what constitutes a positive reading and whether or not chronic Lyme even exists. Wikipedia is not a good source for accurate information about Lyme as well. Many labs are not equipped for proper reading of Lyme bacteria causing people with Lyme to be mis-diagnosed and told they don’t have it; therefore the CDC cases of Lyme reported are grossly underestimated. The CDC standards for treatment are not providing successful cures. Many doctors have come under fire from those not in agreement with this type of limited treatment and doctors have had their medical license threatened or revoked when they treat outside of these criteria, but when they do so they are having successful outcomes and improved lives. So now they are forced to treat their patients without being able to accept insurance and/or do not advertise their practices. There are now Lyme Associations and private researchers working hard to make changes and bringing awareness and better understanding of the disease, so there is hope.
Lyme bacteria not caught early can leave its victims fighting big health battles and auto immune complexes, and due to the controversy around Lyme, many patients are treated with disdain because many times they may not look that sick. They get passed off as being lazy or under stress. I personally want to be active and enjoy life to the fullest if possible but Lyme causes slow agonizing suffering and can affect many parts of the body including the brain. Some symptoms of Lyme are debilitating fatigue, ( not tired after a long day fatigue, but disabling fatigue), neurological problems like confusion and cognitive problems, arthritic pain, vision disturbances, skin rashes and itching, fever and chills simultaneously, insomnia and even at later stages if it crosses the blood brain barrier it can cause problems that can mimic mental illness. The illness itself can lead to feelings of despair. There are cases where people cannot even get out of bed because they are so ill.
The spirochetes were found present in my blood for five different bands (measurements/Lyme bacteria) and two of those were direct indicators. Currently, I am experiencing 13 out of 16 of the main side effects of Lyme including the never ending fatigue, memory loss, cognitive issues, chills/fevers, skin problems (so much that I must wear long sleeves in the blazing heat of summer), vision blurring, food allergies, and some muscle weakness and pain. This all of course leads to worrying and emotional suffering as well.
There are very few Lyme literate doctors in the United States and many are booked months out. I have found four doctors so far that my doctor and I have discussed provide treatments that would work best with my ailments and combine antibiotics and immune support protection for higher success rates in treatment. Antibiotic therapy alone, long term can be like chemo and create secondary problems. I am still praying for the right direction as these doctors are in Missouri, Washington DC, Washington State, and Utah which means greater expenses for traveling. I just have to trust God in this.
Travel out of state, not being able to bill insurance or lack of insurance is a huge roadblock. Initial visits range from $450-$750. Subsequent visits are $500- $250. The antibiotics and other medications can run anywhere from $500-$1600 per month. After the first two visits many times you can do phone appointments (which still costs). The treatment, depending on the severity of the illness and what phase of Lyme a person is in can run from 1-3 years.
I was living a normal life and one day it was all taken from me. This can happen to anyone. Now I am having difficulty with financing basics for living - like car insurance and repair, phone, food, essentials are in competition with necessary expensive personal items for my skin care (my skin is one of the worst symptoms I have) eye care and other symptom management that adds up quickly. It is important that I take thyroid medication and a few quality immune support and detoxification supplements. I can’t eat a lot of foods due to allergies so my food bill is higher than typical due to searching out foods I am not allergic to. This is taxing, even before Lyme treatment with a physician. I don’t think I can beat it on my own, I need medical care. This is very hard to talk about, but an illness can throw you into financial stress very quickly as many probably already know of someone in the same boat. You may even know of someone with Lyme -keep in mind, Lyme caught early, can be easily treated, but if not, it turns into a much larger battle like the one I am fighting.
This is my story and I want my life back. As hard as it is to ask for help, and I know many people have other horrible illnesses that also need help, this is what I have to do for my 3 children so I can be active again and live a longer life. I am not trying to be dramatic. I know this world is full of suffering. This is what I have to hope for right now. Lime (Lyme) Green is the color for Lyme Support. I hope you will consider green this year along with pink/red, etc. - all needed causes.
It’s in His hands. Matthew 11:28
I am humbly grateful that you read my story and for any prayers or support you can offer. Sincerely, Nancy Jamrose
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