Four years ago, a family member told me they had just been diagnosed with MS.  It was a shock.  This person was young, strong, and capable and didn’t fit the profile.  We were both scared about what the future held for our family.

Nothing prepares you for this kind of news.  It was the kind of thing that made the hairs on the back of my neck to a stand up and terrified me to the very core of my being.  The world somehow stopped just after that news—as if I were inside of a snow globe with the little hard plastic fake snow swirling around me.  The questions began to plague me both night and day.  How did this happen?  Is it genetic?  How do we find help? 

The rest of the world went on about its business outside of the bubble it felt like we were in.  Oblivious to the shock, grief, and seemingly unending doctor appointments that were to follow.

A history of Lyme

Lyme borreliosis in humans is an inflammatory disease affecting multiple organ systems, including the nervous system, cardiovascular system, joints, and muscles.  It is caused by the spirochete Borrelia burgdorferi and is transmitted to the host by a tick bite.

The full syndrome, now known as Lyme disease, was not recognized until a cluster of cases originally thought to be juvenile rheumatoid arthritis were identified in three towns in southeastern Connecticut in 1975, including the towns of Lyme and Old Lyme, which gave the disease its more common name.  In fact, 39 children living relatively close to one another in Lyme, Connecticut, that year were recognized as sharing common symptoms consistent with juvenile rheumatoid arthritis.

Advertisements

The 2010 autopsy of Ötzi the Iceman, a 5,300-year-old mummy, revealed the presence of the DNA sequence of Borrelia burgdorferi making him the earliest known human with Lyme disease.

Why should we take note in our area?

Lyme disease and ticks carrying the bacteria are well known throughout the eastern part of the US.  Currently, ticks have migrated and can be found in western regions, as well.   Lyme disease has been diagnosed in every U.S. state and on every continent except Antarctica. 

“Approximately 25–50 percent of people infected with Lyme disease do not develop a rash, and only 3-26 percent of people see the tick that bites them.” ~  Dr. Christine Green

More locally speaking, I am personally aware of at least two cases which were caused by bites from an infected tick in the Broadus, Montana, area.  One being my close family member and the other, a friend and neighbor. 

Unfortunately, the infection was not caught in time with antibiotics and this person had no recollection of being bit or of seeing a rash.  They do remember ticks crawling all over the sagebrush and all over the dogs that belonged to the owners of the ranch where they had been working.

Take precautions

Precautions should be taken, especially during spring and fall.  With hunting season, fencing, and firewood gathering just around the corner, tick checks should be done repeatedly while working and following working outdoors. 

The prevention of tick bites is our strongest weapon against Lyme disease.  Catching it early is also key.  Watching for symptoms after a tick bite and going to get help makes all the difference in the world between being able to treat it and not allowing it to reach the chronic stage.

What to look for

Ticks are active year-round, other than during subfreezing winter weather, but spring is the most dangerous season.  That’s when the baby ticks, or nits—so tiny as to be almost invisible—are born and plentiful.

Early signs and symptoms

It is important to educate and look for other signs and symptoms that can occur after an infected tick bite.  According to the Center for Disease Control (CDC), other symptoms to look for three to thirty days after a tick bite include:

  Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes

  Erythema migrans (EM) rash:

  •  Occurs in approximately 70-80 percent of infected persons
  •  Begins at the site of a tick bite after adelay of 3 to 30 days (average is about 7 days)
  • Expands gradually over a period of days reaching up to 12 inches or more (30 cm) across
  • May feel warm to the touch, but is rarely itchy or painful
  • Sometimes clears as it enlarges, result in a target or “bull’s-eye” appearance
  • May appear on any area of the body

Later signs and symptoms

According to the CDC, later signs and symptoms which can occur thirty days to several months after a tick bite include:

  Severe headaches and neck stiffness

  Additional EM rashes on other areas of the body

• Arthritis with severe joint pain and swelling,
particularly the knees and other large joints

  Facial palsy (loss of muscle tone or droop on one
or both sides of the face)

• Intermittent pain in tendons, muscles, joints,
and bones

• Heart palpitations or an irregular heartbeat
(Lyme carditis)

  Episodes of dizziness or shortness of breath

  Inflammation of the brain and spinal cord

  Nerve pain

• Shooting pains, numbness, or tingling in the
hands or feet

  Problems with short-term memory

How to prepare for the outdoors

Choose light-colored clothing as ticks are more visibly seen.  Long pants tucked in to long socks and long sleeve shirts are a good idea to wear.  Ticks crawl up the body, generally speaking.  Deet is commonly recommended and there are also all-natural alternatives and sprays that contain a blend of essential oils.

Doing a tick check after being outdoors is another great preventative measure.  Ticks prefer moist, warm areas of the body such as the head, armpits, groin area, etc.  If you do find one, this is the recommended procedure to remove a tick.

How to remove a tick

1st

Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.

2nd

Pull upward with steady, even pressure.  Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin.  If this happens, remove the mouth-parts with tweezers.  If you are unable to remove the mouth easily with clean tweezers, leave it alone and let the skin heal.

3rd

After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol, or soap and water.

4th

Never crush a tick with your fingers.  Dispose of a live tick by putting it in alcohol, placing it in a sealed bag/container, wrapping it tightly in tape, or flushing it down the toilet.

Chronic Lyme harder to treat?

Physicians are now becoming more open to the fact that more and more patients are coming in with these symptoms, but they are unsure of how to treat chronic Lyme.  These doctors are hard to find, not advertising themselves as Lyme-literate doctors, due to the backlash they receive from others in their field.

We ended up traveling across three states in order to find the help we needed.  The closest office with the ability to send out the blood test for Lyme disease was in Boulder, Colorado.  They had to send the blood sample all the way to California to the Igenex lab.  The fact that Montana and Wyoming are rural areas is an additional challenge as we may need to drive three hours and across state lines to find a specialist. 

But, because Lyme-literate doctors are more common in the Eastern United States or on the West Coast, it creates a financial difficulty in the treatment of Lyme disease, which is most commonly not covered by insurance.

Ironically, Lyme vaccines are available for dogs, but not humans.

Since the CDC continuously denies the existence of chronic Lyme, insurance companies are not required to cover costs related to the disease.  Even if the blood test is ordered, the standard CDC-approved ELISA test picks up only 50-65 percent of Lyme-positive patients. 

Locating a health clinic that offers both an MD and ND, as well as possibly chiropractic and acupuncture services, will streamline the time and money spent on travel.  We were fortunate to find one of these clinics in Colorado.  They also offered phone consultations and email opportunities to work with out-of-state clients for reduced travel costs and expenditures.  That saved us a lot on travel and associated expenses in the long run.  We especially appreciated this convenience during the winter months when long-distance travel can be extremely difficult.

The great imitator

Lyme disease and MS are almost identical if you look at the symptoms side by side.  In both cases, the brain scans show lesions.  The facial paralysis (Bell ’s palsy), the numbness and tingling of the hands and feet, the inflammation, and joint pain are similar.  The brain fog and eyesight issues are also symptoms across both diseases.  But, the one thing that kept racking my brain and recurring to me in my sleep were the night sweats.  This inconsistency led me to research.  I read every book in the local library about both MS and Lyme.  I researched online day and night, scouring blogs and Lyme groups—searching for an answer, searching for hope.

In the end, it was the night sweats caused by a co-infection that led us across three states and through numerous naturopathic doctors, finally connecting with a Lyme-literate ND who was able to do the blood test that would eventually result in a Lyme-positive result.  Called the “great imitator,” Lyme disease can present a variety of symptoms that also mimic a wide range of illnesses including chronic fatigue syndrome, fibromyalgia, ALS, Alzheimer’s disease, depression, insomnia, along with autoimmune disorders such as RA and Multiple Sclerosis (MS).

The importance of a great support system

Support from family and friends is critical for those faced with Lyme.  Chronic Lyme resurfaces or “flares up,” so there are good days and bad days.  Support from loved ones is crucial during the flares.

Even just a phone call or spending a couple hours together can have a huge impact.  In fact, the depression and suicide rate for Lyme disease is quite high.  Physical or mental health problems limit Lyme patient functioning on 19 days each month compared to only two days per month for the general population.  While living in an isolated and rural area, online support groups can offer support and connect Lyme patients and family members together with others going through the same experiences.

As a support person, my job is to listen and let them know that they are not alone.  Believe me, this disease affects more than just the person with the illness.  It can take a toll on everyone inside the family unit.  It even branches out to the extended family.  During the time I was going to all those doctor appointments, I had to leave my children and husband alone to fend for themselves.  They did survive and became more independent, but it was hard on all of us to be apart.  I will say though, that I was able to spend some quality time with my loved one in need and create some memories that I cherish.  The journey has also led me to go into natural health myself and has birthed a new-found hunger to help spread the word about the disease and try to give hope to other people going through it, too.

“Normal”

It is so very important to have some fun and go do things out of the ordinary.  A chronic illness has such a serious nature and without some good laughs is impossible to muddle through.  Because being “normal” when a person doesn’t feel normal is tough, so why try?  We especially enjoyed visiting several mineral hot springs, which offered not only some fun, but health benefits for our bodies including a positive effect on this person’s symptoms!

Why is Chronic Lyme Disease the least funded and most unknown of all the diseases?  Why aren’t doctors screening their patients for Lyme to rule it out?  Why did we have to travel to another state and almost 1,000 miles away from home to even have the blood test ordered and sent all the way to the only lab in the US to test for Lyme disease?

I strongly encourage a second opinion, no matter the illness.  I suggest that we all take responsibility for our own health and, as such, do the research it takes to find a physician who truly cares for the patient’s health over financial motives.  A care provider who takes time to listen to all the symptoms and who rules out and orders testing for all the options it could be, before suggesting a diagnosis or expensive treatment plan.

In the end, my family member chose a clinic in Colorado that provided both an MD and a Naturopath who was Lyme-literate.  They were treated with both natural and traditional medicine and, at this time, are in remission from this nasty disease.  They were lucky to have found out they had Lyme within a four-year time period.

Some chronic Lyme patients struggle with symptoms and are plagued by the illness for 10, sometimes even 20 years, before they find a physician who is knowledgeable in this area.  They are told they are making up symptoms in their heads, not taken seriously and go from doctor to doctor, and are eventually lost within the system.  No test to date exists that can prove if the Lyme organism is eradicated or that the patient is cured. 

What the future holds

Chronic Lyme disease effects people of all ages from all areas of the U.S.  The stress and grief spreads through families leaving a wake in its path.

It affects the relationships, jobs, and financial security of the people who struggle with it.  Clearly, there needs to be a better test and more accurate way of diagnosing this disease.  It is something that we can all hope for from medicine in the future.

In 2017, the FDA approved a Fast Track designation for a new Lyme disease vaccine. Initial trials were completed in early 2018. The next phase is projected to be complete by the end of the year.  A new test for Lyme disease is on the horizon that will be “more exact and are not as susceptible to the same false-positive or false-negative results associated with the current tests,” said Steven Schutzer, a physician-scientist at Rutgers New Jersey Medical School, to Science Daily.

I have been hearing from other people of more and more clinics in the Western Region that are offering both medical and natural doctors who are knowledgeable and have training about the disease itself.   Things seem to be progressing in the right direction, but it still all seems to go along so very slowly when it is a race against time and it’s you or your family member’s health at stake. 

Consider this: West Nile Virus has a fraction of new cases per year compared to Lyme disease, yet it has more than double the research funding.  Sadly, CDC data shows that funding for Lyme disease research has not increased since 2013. 

Still, hope prevails.  I am excitedly anticipating what this next year will bring for those families who, like mine, are affected.


By: Megan K. Huber of Huber Farms for 82717

Leave a comment