Help Rusty Find Hope and Healing

For those of you who had the pleasure of knowing our dad, Rusty, it is beyond heartbreaking to let you all know that he has been faced with a rare condition that we have yet to get a solid diagnosis for. Around late October to early November, he started to experience weakness in his right leg. From that moment on, things started going downhill quickly. Fast forward to now (three months later), and he is completely wheelchair-bound. He is starting to lose strength in his upper body. We know that he has some sort of myopathy, but he does not follow the typical progression of ALS. Whatever afflicted him happened very suddenly.

He’s been seen by Mayo (neuromuscular) and Barrow (spine). He’s had a myriad of tests, including genetic testing and Lyme. His motor nerves are not working in his lower body, his muscles are fasiculating (twitching) in his upper and lower body, his spinal column has some stenosis (narrowing), his MRI is clean, his genetic testing is clear and his Lyme test came back negative. The type of Lyme test he received can often have false negatives. We would like for him to get a more sensitive and comprehensive test.

All of his symptoms started when he was dealing with an infected root canal. After cone beam testing, we learned that our dad has an infected cavitation around his old root canal. He assumed that the issue was gone when they finally pulled his tooth. However, it has been proven that treated infections can linger in cavitations in the mouth and could possibly be related to many of the issues he’s currently experiencing. Oral surgeries in this realm are not covered by insurance.

Mayo agreed to start subcutaneous immunoglobulin treatments (IVIG) to see if that will slow the progression of his condition. These treatments are used to manage conditions where the immune system requires additional support or replacement due to deficiencies or dysfunction. However, we are continuing to fight with the insurance company to get the treatments started.

Beyond that, we would like him to see a Lyme-literate doctor who can do a more comprehensive Lyme test. It is well-known that it can take multiple types of tests to truly rule out Lyme disease. We have spent a great deal of time researching the link between Lyme disease and ALS-like symptoms. Interestingly enough, the majority of patients with ALS test positive for the bacteria that can cause Lyme disease.

Additionally, given our dad has also worked around metal (as a welder) his entire life, our hope is that a naturopathic doctor will look into metal toxicity.

This is just a summary of what we’ve been through trying to get our dad the care that he deserves.

Anyone who knows him knows that he would do anything for other people. He was the first to be at your door if you needed help fixing something. He gave his time to so many. He loved working on things in his shop and building cars and bikes for other people, often not getting compensated for the work that he did.

We are asking for financial help in getting our dad to a doctor who will address his issues from a functional standpoint. Even if his remaining time with us will be short... even if getting to this point has wasted too much of our time to find a reasonable reversal… we want to make sure that we look into the things that mainstream doctors won’t offer, and insurance companies won’t pay for. We’ve seen hundreds of success stories in treating myopathy-type conditions with a functional medicine doctor or Lyme-literate doctor.

ALS research is ongoing and there is currently no cure, but there are so many people out there fighting ALS (or similar diseases) with success. We want to give our dad that hope and the same opportunity to make a meaningful recovery.

Any donations would be utilized to help us pay for the next steps (lyme literate doctor, subsequent treatments, oral doctor and multiple oral surgeries). All of these things will cost a lot of money. This has been a huge financial strain as our dad was still earning an income and has now had to stop working. He still has bills and only receives a partial retirement. The medical bills are adding up and your donations will help ease our burdens. Any amount would be greatly appreciated.

With your help, we believe we will be doing our due diligence by looking into various alternative methods to get to the bottom of what is causing him all of these issues, and to help us find a road to recovery.

Thank you so much for taking the time to read about what has been happening with Rusty/Dad, and offering any help that you can.

Amber, Zach & Alisa