My Lyme Story (Lyme Disease Awareness)

2020-05-18
Tara

MAY IS LYME DISEASE AWARENESS MONTH!

Our goal is to spread awareness and help prevent others from getting this debilitating disease!

This is my story…

I have been fighting Lyme disease for almost 8 years now…This battle is against an invisible illness that tries every single day to take more and more from me. But, I will keep fighting because I have a LOT of living left to do (and a pretty cool home on wheels to do it in)!

I started getting sick and noticing strange changes in my body at the end of summer, 2012. At that time, I was in the best physical shape of my life. I was always on the go…and then, BOOM, my life changed!

The symptoms I started with: (please note that everyone experiences different symptoms)

Strange and intense muscle spasms all over (from my scalp to the soles of my feet), painful “zaps” that felt like little lightning bolts touching my skin, headaches, debilitating fatigue, dizziness, and cognitive issues. I went to about 20 doctors over those course of 2 years to try and figure out what was wrong. No one could figure it out until I came across a wonderful Nurse Practitioner who said “Your symptoms really do sound like Lyme Disease” (even though my results were negative on previous Lyme tests). I ended up having to pay out-of-pocket for a specialty lab to run more thorough tests and that’s how I found out it was definitely Lyme and several other tick-borne infections.

During the two years of misdiagnosis, the corkscrew-shaped Lyme bacteria had time to spread and burrow into any soft tissue where they felt like setting up camp. It wreaked havoc on my immune system and body. Even though I had several years of treatment, I am not better. We don’t exactly know why or what is my main issue these days, but the battle continues.

Advice

I get a lot of people who write to me and ask for advice on Lyme disease treatment. This is a tough one to answer because no two people will respond the same way to a treatment. Here is what I have tried (that I can remember at this point)…

  • Years of taking antibiotics off and on. 
  • Prescriptions – more that I can count or remember
  • 9 MONTHS of IV meds – through a catheter in my chest
    • Hooked up to the IV bags 4-6 hours a day
  • Several stem cell infusions (a costly “experiment” that seemed to work only the first time)
  • Numerous herbal and supplemental protocols (too many to remember)
    • You name it, I have probably tried it
  • Dietary changes
  • Ultraviolet light blood irradiation treatments with ozone (10+ of those)
  • Vitamin infusions (too many to remember)
  • PEMF mats
  • Red light saunas
  • Radiofrequency nerve ablations for nerve pain
  • Botox injections for face pain

Everything I try is an experiment. There are no set treatment standards that really and truly work for everyone, although the old-school (and false) medical belief that 30 days of antibiotics will completely destroy the Lyme bacteria is still widely believed. In fact, I just looked a new doctor in the eye a few days ago and told him he was wrong about that. (didn’t go over well with him ?) Please note that, if caught right away, 30 days of antibiotics will probably take care of the infection. But, not always.

Treatment Side Effects

Lyme disease treatment sucks. You will feel so much worse before feeling any relief. This, unfortunately, is normal. As the spirochete bacteria are killed off, they release toxins into the bloodstream, causing a major flare-up of symptoms that can last the entire treatment and longer. The 9 months that I was on IV meds was the absolute worst time in my life! At times, I didn’t care if I made it through. But, I finally did make it through, although I am not convinced that it helped much.

My immune system has been through so much that I also have other health issues to face everyday.

  • Hashimoto’s Thyroid disease
  • Chronically active Epstein Barr virus (the same virus that causes mono)
  • Systemic fungal infection in my bloodstream
  • Frequent anemia
  • And who knows what else is going on in there…

Daily Life

Every day is a fight for me, even my “good days”. Every day there are limits to what I can achieve. Every day there is tremendous pain and fatigue. Some days, I cannot even make it out of bed. Others, I might be able to get out and explore a bit. We try to make the best of my good days and I try not to get too upset on those really bad days (which isn’t easy after 8 years).

Moving into an RV and living this lifestyle full-time has been a tremendous help in lifting my spirits! For the longest time, I felt like a prisoner in our sticks and bricks home. We rarely ever left the house because I was so sick. Our social life and relationships with friends suffered (because many people cannot understand what I was going through) Now we joke that I can “be sick anywhere and everywhere” because our home is on wheels. But it’s true! I have been sick in a lot of places over the past 2.5 years ?

I am grateful beyond words to have Chad, who is a wonderfully supportive husband! More supportive that I even feel I deserve sometimes. My illnesses took me from an independent woman to one who depends on her spouse for so much. I am so thankful that he is patient, helps without complaint, and is always there for me, even though this is hard for him also. I don’t know what I would do without him by my side. Many people do not realize how difficult chronic illness can be for those who love us and have to become caregivers. 

Prevention

Our goal is to spread awareness about Lyme disease and hopefully prevent others from getting this debilitating illness. 

  • Your best defense against tick-borne illness is to avoid contact with ticks in the first place. 
  • Your next best defense is to quickly find and remove any ticks that may latch on to you.
  • Avoid Tick Habitats – Ticks tend to be near the ground, in leaf litter, grasses, bushes, and fallen logs. High-risk activities include playing in leaves, gathering firewood, and leaning against tree trunks. When you hike, stay on cleared trails instead of walking across grassy fields.
  • Gear up properly – Wear shoes, socks, long pants, and long sleeves. Tie back long hair and wear a hat. Light-colored clothing helps you spot ticks before they cause trouble.
  • Spraying footwear with permethrin will prevent ticks from crawling up your shoes. (In one study, those with treated shoes had 74% fewer tick bites than those with untreated shoes.)
  • Use Repellent On Exposed Skin – Studies show that repellents with DEET, picaridin or lemon eucalyptus oil are the most effective.
  • Check For Ticks – When outdoors, periodically inspect your clothing and skin for ticks. Brush off those that aren’t attached and remove any that are.
  • Shower – Once home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect yourself. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places, including the groin, armpits, back of knees, belly button, and scalp. Parents should check their children.
  • Hot Dryer – Running your clothes in a hot dryer for 10 minutes before you wash them will kill any ticks that may be on your clothes.
  • Protect Your Pets – Ticks can infect dogs and cats, too. Also, their fur can act like a “tick magnet,” carrying ticks inside your home. Consult with your veterinarian about tick-protection for your pets.

Lyme Facts!

Some FACTS (from lymedisaeschallenge.org and lymedisease.org):

  • Every year 427,000+ people are diagnosed with Lyme Disease, yet it is a very misunderstood disease.
  • Fewer than 50% of patients with Lyme disease recall a tick bite or any rash.
  • Children are at the highest risk of contracting Lyme disease and are more vulnerable to central nervous system infections.
  • Transmission of Lyme disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly.
  • Lyme disease has been called “The Great Imitator” and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.
  • Research suggests that Lyme disease and other infections can be spread from mother to baby during pregnancy.
  • Studies show that standard laboratory tests recommended by the CDC to diagnose Lyme disease miss approximately half of actual cases, leading to misdiagnosis and an infection that is more difficult to treat.
  • 56% of patients with Lyme disease test negative using the two-tiered testing system recommended by the CDC.
  • Over 63% of patients treated for Lyme disease continue to suffer symptoms that can be debilitating.
  • The CDC estimates that there are 329,000 new cases of Lyme disease each year in the United States. Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
  • Lyme disease has been reported in every state except Hawaii and has been found on every continent except Antarctica.
  • Lyme disease has 6 times more new cases each year than HIV/AIDS, yet it receives less than 1% of the funding.
  • There are no tests available to prove that the bacteria that causes Lyme disease has been eradicated or that the patient is cured after treatment.
  • Ticks can carry many different types of bacterial, viral and parasitic infections – some life-threatening – which can further complicate tick-borne disease diagnosis, treatment and recovery.
  • Lyme disease treatment is a politically charged issue, so many Lyme disease doctors do not want their names posted publicly on the internet. (Some sources are listed below to find a Lyme specialist)

Last year, we made a video about Lyme disease awareness/prevention and my story…

Helpful Resources

Support Groups on Facebook: (These are just a few of the many out there)

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Youtube

RV Trip Wizard