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Survivor’s story: Lyme Disease, the great pretender

By Marilyn Bruinmsa

 

With the arrival of spring and summer weather comes much more flying by pilots and their passengers. This year of 2012 is no exception with the IPAT at the end of May and the COPA Convention in Hanover in late June. And with warm weather comes bugs, black flies and mosquitoes.

At COPA Flight 45’s March meeting, we heard Lyn Jerome from Clinton tell us his long and uncertain journey with a tick bite which resulted in him being off work for approximately two years.

Lyn, an avid R/C aviator, was flying his radio controlled aircraft in a ravine. He went to retrieve his stray aircraft when he was bitten by a tick. Like any other bug bite, Lyn shrugged it off - just another one of those pesky black fly or mosquito bites, he thought.

About one month later he noticed what looked like a skin tag that had changed colour and size, and Lyn was concerned enough to make a doctor’s appointment to have it removed.

As his family doctor was on vacation, he had it removed by the on-call doctor. This doctor discarded the tick as he said Lyn was fine. Wrong! All ticks removed from humans must be sent away for testing.

If the doctor will not do this, make sure you put the tick in a container and take it to your local Health Unit to have it tested for Lyme disease.

For the next four months Lyn suffered from migraines, became tired very easily, suffered memory loss and personality change. After spending a couple of days with flu-like symptoms he ended up in the hospital for nine days. His kidneys and liver were starting to shut down. He had severe shakes and sweats for three days. The medical team didn’t know what was happening but when his family doctor heard about the tick removal, he suspected Lyme disease.

In the USA they use the Western Blot to test for Lyme disease. In Canada they use the Elisa test, and if it comes back negative, they will not go any further and claim you do not have the disease.

Also, there is no funding for the Western Blot in Canada.

His doctor ordered antibiotics for one month but the symptoms returned as it often takes months to kill the Lyme bacteria and even years with heavy antibiotics. Lyn experienced heart palpitations, fluctuating blood pressure, and stress, so his doctor ordered more tests. One good thing that may have come out of this is that they discovered he had a main artery with a 95% blockage, so a stent was inserted to correct this problem.

Lyn’s wife, Sharon, was so frustrated that she began searching the internet for further information. Through the Canadian Lyme Foundation she acquired the name of a doctor of microbiology in Toronto and managed to get a referral for Lyn to see him.

More tests, but all came back negative.

His Tor onto doctor drew blood and had Lyn send it to California for testing (at Lyn’s expense) to a lab that is renowned for testing for Lyme. This time his tests came back “positive” and more meds were prescribed. From the time he was bitten by the tick to the time when he started his second round of antibiotics, it was one year of trying to get diagnosed and one year of medication!

He went back to work on short hours for about two years, then the symptoms started to come back. This time a pic line was inserted for a more aggressive treatment of antibiotics, but the line had to be removed after one month due to complications.

His Toronto doctor felt that it was all that was needed to finally rid him of this disease. He also recommended to Lyn that he retire from his job. The longer the disease goes unchecked the harder it is to rid you of the disease; it is called “the great pretender” as it can mimic many diseases.

You can end up in a wheelchair or even worse — death! Lyn said he had fantastic support from his family, his family doctor, and his Toronto specialist; without their support, he does not know what he would have done.

Lyn’s advice to others is to stay on main paths when hiking, avoiding areas with long grass and underbrush, wear an insect repellent containing Deet (OFF is a good choice), tuck your pant legs into your socks for added protection, and when you return home, check yourself thoroughly for ticks.

If you find one on you, remove it with a pair of fine tweezers — but it is best to go to your local emergency room to have it removed and sent away. If they won’t send it away, be sure you retrieve the tick and take it to your local Health Unit for testing! Do not use heat, a cigarette, nail polish remover, petroleum jelly or alcohol to remove the tick as it will aggravate the tick and if it is infected, will cause it to ingest you with the disease.

Lyn and another local Lyme sufferer have each done a pod cast on the Huron County Health Unit site. The Health Unit has been more than supportive of Lyn and this gal in trying to get information out to the public on this terrible disease. Lyn is the first reportable case in Huron County.

According to Lyn, there is no quick cure and the longer it is untreated, the more side effects a person may have, and the longer it takes to treat the disease. Even with treatment, the symptoms can return at a later date.

At present the government does not fund the Western Blot testing for Lyme disease. This test is imperative for accurate results and subsequent treatment.

The Elisa test rarely provides the positive results needed to pursue treatment for Lyme.

It is important that your MP’s and MPP’s be contacted to increase the awareness of this serious disease, one that is becoming much more common to our country! Further information can be obtained from the Lyme disease website: www.canlyme.com