My husband Tom Lewis has been seriously ill for about 5 years now. During this time, he has been in and out of hospitals, and has had numerous surgeries and medical procedures. After being diagnosed with Hemiplegic Migraine, Episodic Seizure Disorder, Crohn's Disease, Arthritis, and numerous other diseases, we finally went out of state for a series of tests and found out Tom has Lyme Disease. Because it has been left undiagnosed and untreated for so long, it has become Chronic Lyme Disease. He has the Lyme spyrochetes (bacteria) in all of his organs and joints, and they have even crossed over into his brain. His neurological problems because of this have been the hardest part of this disease.
The other part that makes this so hard is that several states, including Utah, will not recognize or treat Lyme disease. This means that even though we have great insurance (we even have double coverage for Tom) our insurance will not pay a dime on any treatment for Lyme. We have been struggling financially for years because of this. Tom has not been able to work for the past 4 years. He qualified for a disability because of all his health problems, but this amount is meager, compared to what we spend on medical bills each year. I have had to work full time+ to support our family. We sold our house because we were sinking in medical bills. We have been renting for the last several years, which has been hard, but we have made it work. We simply cannot afford the unexpected costs of owning our own home.
Two years ago, we had friends (some of my coworkers) help pay for our gas to travel out-of-state for some experimental medical treatments. This treatment left us with a huge medical bill, but has helped to significantly decrease the amount of seizures Tom was having. We then found a doctor in-state, that quietly treats Lyme patients here in this valley. We are thankful for some of the improvements we saw in Tom while in treatment, but when our total balance left owing became unbearable, we had to stop treatment.
Tom's health has been steadily declining because we cannot afford to jump into another round of treatments. He is living in pain daily. He has a broken back and two torn shoulders from grand mal seizures. It is becoming harder for him to walk each day. After talking to his neurologist about how extremely painful it has become for him to get out of bed some days, he ordered several new tests and we found out he has progressive neuropathy in both of his feet and legs. Tom is only 42 and is not diabetic. We need to find a way to stop (and hopefully reverse) the damage to his nerves soon!
This is the part where we swallow our pride, and ask for help. It is so hard for us to do this, because we have already been the recipient of so much kindness. We have already had so many people help us along this journey, and we are grateful to each of you.
We have recently found a treatment out of the country (in Mexico) that has our whole family excited and hopeful for the first time in a very long time. We've decided we have to give it another shot!
We want our husband and dad back.
We want our lives back as a family.
We want to be able to make plans, and look forward to years ahead together.
This is one of the hardest, most humbling things we have ever had to do, but we feel like we have a chance. We are hopeful that the generosity of those around us can help change our lives for the better!
We are ready to take on this next battle!
Thank you for your help, support, and friendship!
(and the Lewis family)
*If you would like details about the treatment, please feel free to message me, or call me.
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