My journey to a diagnosis of Lyme disease started with spending a year with a Neurologist in 2012 and even though all of my tests were abnormal she had no idea what was wrong. My search knowledge has improved greatly so I set out to find what was killing me. I took keywords from the test and combined keywords in other tests. I was very lucky to pin down what I thought was Lyme disease by knowing I did not have the other chronic illnesses mentioned.
I started the second part of my journey by searching for a Lyme-literate Doctor, which I tell you is not an easy task and it’s not getting easier. I had to track down what association Lyme doctors belong to, I contacted them and it was a secretive process. I called ILADS and told them I was looking for a Lyme doctor in the area, they took my number and said someone would call me back.
The first doctor was on crack so I dug deeper to find one on my own and found a highly respected Infectious disease doctor in Washington, D.C. and now my journey really started. I went through close to 18 months of IV Infusion treatments which felt like death to me.
If you think you’ve been bitten by a tick and a month has passed, your Primary Care Doctor can no longer help you. Find a Lyme Liturate doctor right away.
Here’s the timeline before Lyme becomes chronic.
If you have a bulls-eye rash go to the doctor right away. They can prescribe antibiotics for 2-4 weeks and you are lucky. It’s important to know that 30% of people do not get the rash, I didn’t have a rash so I had passed the point of short-term antibiotics and moved into the Chronic Lyme disease phase.
The most important is to remember doctors only test for a few strains of Lyme and they have a high failure rate. If you feel strongly, ask for a full panel on Lyme disease. If they don’t want to retest you have the option of using an outside lab to run the test but at your expense. The money spent on tests could save your life.
The treatment for Lyme was not covered by insurance and we spent close to $150,000 on my treatment which meant a second mortgage on our house. Be prepared for the cost, there are no shortcuts with Lyme.
Wikipedia explains Ticks:
Ticks are parasitic arachnids of the order Ixodida. They are part of the mite superorder Parasitiformes. Adult ticks are approximately 3 to 5 mm in length depending on age, sex, species, and “fullness”. Ticks are external parasites, living by feeding on the blood of mammals, birds, and sometimes reptiles and amphibians. The timing of the origin of ticks is uncertain, though the oldest known tick fossils are from the Cretaceous period, around 100 million years old. Ticks are widely distributed around the world, especially in warm, humid climates.
Ticks belong to two major families, the Ixodidae or hard ticks, and the Argasidae, or soft ticks. Nuttalliella, a genus of tick from southern Africa, is the only member of the family Nuttalliellidae, and represents the most primitive living lineage of ticks. Adults have ovoid/pear-shaped bodies (idiosomas) which become engorged with blood when they feed, and eight legs. Their cephalothorax and abdomen are completely fused. In addition to having a hard shield on their dorsal surfaces, known as the scutum, hard ticks have a beak-like structure at the front containing the mouthparts, whereas soft ticks have their mouthparts on the underside of their bodies. Ticks locate potential hosts by sensing odor, body heat, moisture, and/or vibrations in the environment.[1]
Take all safety measures recommend to prevent tick bites.
Melinda
References:
Reader Digest for tick photo
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