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Lyme Disease Controversy – Which Side Are You On?

English: Erythematous rash in the pattern of a...
English: Erythematous rash in the pattern of a bull’s-eye from Lyme disease (Photo credit: Wikipedia)

Welcome to part two of our Lyme Disease blogs. We covered Lyme in our pets, and now, I’ll share my personal journey with Lyme disease.

You Can Get Lyme In Your Backyard!

I don’t know when I contracted Lyme disease the first time (I was re-infected in 2008) because I never remembered having a tick bite and I certainly never had a bulls-eye rash. I live in Wisconsin and at the time I was first infected, I  did have a dog, so it’s possible I picked it up from him.

I was never one to get sick.  I don’t think I ever had one sick day in my busy corporate job. But I remember I started having a variety of symptoms – real fatigue, trouble sleeping, trouble concentrating, some aches and pains in some of my joints and an overall feeling of malaise.

There was a lot going on in my personal life at the time and my work was very demanding, but I kept thinking something else was wrong. I went to my family doctor and asked to have my thyroid checked, but the tests came back normal. She said it was probably stress related. So, I just coped with the way I was feeling because, that’s what women tend to do when they’re busy taking care of everyone else!

Several years later, I changed jobs thinking the new job would help, and then I met the wonderful man who is now my husband. I had nothing to be depressed about – life was good, but still I sensed something was very wrong. I found myself getting flu-like symptoms, I’d wake up with horrible jaw pain and headaches, and had a lot of unexplained lower back pain.

I actually had to miss work several times because I was so sick with what I thought was the flu. I was so tired all the time, wasn’t sleeping at all, and if I did sleep, my bladder was waking me up in the night. I even went in to get checked for bladder infections – as an irritated bladder is one of the many symptoms of Lyme.

Chronic Fatigue and The Blues

Despite how wonderful things were, I had no motivation, I didn’t want to be around people (not like me!) I was bothered by noise, couldn’t concentrate and I felt like I had the worst case of ADD ever, even swallowing seemed difficult. The worst part was that I was so easily agitated and overly emotional.  I forced myself to  do things and act happy, but I didn’t feel like it. I worried someone would say it was all in my head.

After seeing the chiropractor, the dentist and my family doctor, I finally said “Enough!” I knew had to see someone who’d get to the root cause of why I was having symptoms of so many different illnesses.

Do You Have Lyme Disease?

I sought help from an MD who was board certified in holistic medicine, and was only 50 miles from my home. My first visit I was there for almost four hours! The doctor spent 1.5 hrs with me – when does that ever happen?

As we reviewed the extensive paperwork I had completed, he was writing up scripts for the umpteen tests I would be given, he asked me if I was a candidate for Lyme disease. I emphatically said, “No, I don’t go in the woods, I don’t camp or hunt…..” and that’s when he said, “You can get it in your own backyard.”

I agreed to the test  – fully expecting to prove him wrong. You can imagine my surprise when I tested positive for chronic and acute Lyme disease.

I refer to my visit with him as a divine appointment because I didn’t go to him for Lyme disease – I just hoped he could figure out what was wrong with me. I didn’t know he was a “Lyme literate” doctor. That began my long  journey to recovery.

He worked on building up my immune system. I had to be on a low dose doxycycline (antibiotic) for four months.  Following the treatment, I couldn’t believe how much better I felt.

The long term effects of Lyme are so debilitating and yes, even deadly. And just to remind you, Lyme is everywhere! Check out this map from the Lyme Disease Association of New Jersey, that shows you just how prevalent Lyme disease really is in the US.

They report that “According to the CDC, only 10% of Lyme disease cases meeting the CDC criteria are reported each year. That means about 230,00 new cases of Lyme meeting that criteria occur each year in the US.” Sounds like an epidemic if you ask me!

Getting a proper diagnosis is a challenge, and if you do, be forewarned!

The treatment and recognition of Lyme disease in people is a very hot topic. If you suspect you might have Lyme, be prepared for a battle!  There are two opposing medical camps regarding the treatment of Lyme disease. There’s the Infectious Diseases Society of America  or IDSA and the International Lyme and Associated Diseases Society  or ILADS,  I’m clearly biased, but here’s my assessment on the two groups.

The IDSA doctors seem to deny the existence of chronic Lyme. It’s easier and more profitable to diagnose a person with chronic fatigue, rheumatoid arthritis, or MS, and prescribe a drug the patient has to take for the rest of their lives, than give them the individualized treatment they desperately need.

They don’t listen to what the patients are telling them about their symptoms and generally think two-four weeks max is enough to take care of a tick bite.  There are Lyme patients who have had to use IV antibiotics for many months to get well.  Needless to say, IDSA gets ample support from Big Pharma.

The Lyme literate doctors know chronic Lyme disease is real and they’ve risked their livelihoods and careers to help their patients and educate other doctors about Lyme disease and its related co-infections. They are working  to improve the “standard of care” for Lyme sufferers.

If you really want to learn more about these two opposing medical communities – I strongly recommend you rent the movie Under Our Skin, a multi-award winning documentary on Lyme disease. You can watch the trailer here. You’ll see what greed and conflict of interest will do to destroy peoples lives.

Here are some things you need to know about Lyme disease:

  • Only about 50% of people infected with Lyme will develop the bulls-eye rash.
  • Fewer that 50% remember getting a tick bite.
  • Testing for Lyme is very inadequate and Lyme literate doctors prefer the Western Blot over the ELISA test.
  • A negative Lyme test result doesn’t mean you don’t have Lyme.
  • Where your test is sent makes a difference!
  • There are no current tests that will tell you the spirochete has been eliminated.
  • You can get Lyme in your back yard.
  • You can get Lyme disease from a blood transfusion. (I can no longer donate blood! Fortunately, the American Red Cross is now screening for Lyme in some states.)
  • Lyme is transmitted by tics, biting flies, mites, fleas, and from sexual transmission.
  • Lyme may also be passed in the placenta and breast milk.

Psychiatric Lyme – What You Need to Know!

There is one final, but critical thing I want to point out, that is the area of psychiatric Lyme. This is especially important for parents who have children who might be diagnosed with ADHD, OCD, and even autism.

Many children today are being put on anti-psychotic drugs for ADHD and behavioral issues when they really have Lyme disease. A person who has been suffering from late-stage Lyme disease may present a whole myriad of symptoms of mental illness.

Check out the video below from LymeBook.com, to learn more about the psychiatric manifestations of Lyme disease and see the symptoms listed below.

It will at least get you thinking if you’ve seen unexplained behavioral changes in people you know.  They include but aren’t limited to:

  • Cognitive loss (i.e. brain fog, dyslexia and word-finding problems, trouble finding things or getting lost.
  • Psychosis
  • Rage attacks/impulse control
  • Anxiety and/or depression
  • Panic attacks
  • Rapid mood swings that mimic bipolarity
  • Obsessive compulsive disorder
  • Autism-like syndrome

How many people are being prescribed anti-psychotic drugs when they really have a Lyme/tick-borne disease? There have been many occasions where people who were treated for a mental illness (but actually had Lyme disease) got better after being on antibiotics.

There are many good Lyme Disease organizations that you can research. Some of my favorites include:

If you’ve been diagnosed with something and you question the diagnosis – don’t give up!

I don’t even want to think what my health would be like today if I hadn’t been persistent about getting to the bottom of what was really wrong with me. If you’re questioning a diagnoses – you owe it to yourself to find out what’s really wrong.

If you have a similar story, or you’re wondering if you might have Lyme, we’d love to hear from you.

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