Heads or Tails: ALS or Lyme Disease?

By Jo Ann Simon

Flip a coin to decide what incurable disease you might have?  I wish it was as easy as that. In my experience, it took much more time, research, testing and hoping for a diagnosis that we could literally live with.  My husband was diagnosed with Lyme Disease and three years later he died from ALS (Lou Gehrig’s Disease). He was diagnosed with ALS after and during positive Lyme Disease testing results.  I do not believe this was a coincidence. I believe that Lyme Disease was the catalyst that allowed ALS to accomplish its deadly deed.

We traveled down the road of hope thinking that the similarities of the two diseases might lead us to a good result with medicine, pure determination and lots of research for a cure.  Treatment of antibiotics for Lyme was our champion to solve the mystery of which disease it was. After that failed, IVIG Intravenous immunoglobulin infusions for autoimmune diseases (from the plasma of approximately a thousand or more blood donors) helped to extend my husband’s life and improve his overall health.

The definitions of these diseases both speak to the neurological effects that create neurodegenerative and neuromuscular disorders that occur in the central nervous system of the body.

Definitions:

Lyme disease

An inflammatory disease characterized at first by a rash, headache, fever, and chills, and later by possible arthritis and neurological and cardiac disorders, caused by bacteria that are transmitted by ticks.

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment – “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.

The culprit can be the spirochete borrelia burgodorferi bacteria of Lyme Disease or the unnamed foreign invader of ALS in the brain that triggers motor neuron disease, or are they the same?

Our research, testing and discovery brought us through a maze of doctors, hospitals, treatments and various results.  We celebrated when we thought it might be MMN (Multi Focal Motor Neuropathy) or Guilliane Barre, both treatable motor neuron diseases, but further testing eliminated that glimmer of hope.

Five little known facts about ALS and Lyme Disease

1. ALS and Lyme Disease have common ground with the auto immune and the central nervous systems (http://als-cure.com/als-lyme/almost-all-als-patients-are-lyme-positive).
2. Common symptoms range from fatigue, numbness, muscle weakness and twitches, speech impairment, and cramping (https://www.holtorfmed.com/als-another-lyme-related-disease/).

3.Recent studies that show that a significant percentage of ALS diagnosed patients test positive for Lyme Disease (https://www.holtorfmed.com/als-another-lyme-related-disease/) (http://als-cure.com/als-lyme/almost-all-als-patients-are-lyme-positive/).

4. In some cases, patients diagnosed with ALS actually had Lyme Disease instead (https://www.huffingtonpost.com/david-michael-conner/man-diagnosed-with-als-di_b_8891262.html).
5. Lou Gehrig, the namesake of ALS, lived very close to Lyme, Connecticut, where Lyme was born (http://als-cure.com/).

The most important takeaway from our research is that everyone needs to protect themselves, their family, friends and pets from ticks. Prevention of a tick bite could save your life! Prevention is the best medicine.

• Use bug spray that has DEET (Off or Repel products) or Picaridin (Sawyer, Fisherman, Skin So Soft products). These are effective to deter ticks and can be found online, or at your local pharmacy, or department store.
• If you are walking in grassy wooded areas, tuck your long pants into socks and wear long sleeve shirts so that your skin is not exposed. They might still jump on you for a ride, but you can eliminate them by running your clothes in a hot dryer for 10 minutes so they turn into harmless toast.
• You can treat your shoes and clothes with Permithrin, a synthetic pesticide that repels ticks from 5 to 70 washes, depending on the product. Insect Shield in North Carolina will treat your clothes for up to 70 washes, or you can treat yourself with different products such as Sawyer insect repellent which can be purchased on line or at your local pharmacy, grocery or department store. L.L. Bean and Cabela’s sell pretreated clothes and camping gear.
• Protect your pet. If you stopped your pet’s tick preventive over the winter, get it started again NOW. Outdoor dogs and cats will likely be the first family members to find a tick and bring it home to you. Talk to your vet to decide the best product for your pet.
• Get professional treatment for your property to eliminate the threat of ticks in your outside living areas. This does not stop the threat elsewhere, but at least you can sleep at night not worrying about the ticks on your doorstep.
• Do a tick check every day. This is especially important for your children and pets since they normally spend the most time outside.