Lyme Disease is Serious Business - Part 3

Part 1 is here. Part 2 is here.

And now, finally, part 3... This is the second half of our friend's email about her Lyme Disease.

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Below, more detailed information about the disease and some links but I want to stop here to share these few conclusions and say this:

I don’t want anyone to be paranoid or sound excessively alarmist but the disproportionateness of the risk of getting Lyme disease because of being uninformed and unaware, possibly resulting in years of disability, versus a few easy precautions taken, makes sharing this information seem warranted and worthy.

1. Take a thorough shower after you have been in a forest, on grass, on Mount Tam or wherever you suspect deer hanging out, even if you have never seen them there. Check your skin. I even go as far as washing my hair now every time and don’t find that the least bit paranoid, considering the amount of people in Marin alone that I know who have been battling Lyme disease in some cases for up to 20 years. And it is difficult to spot them on the head or back of the neck.

2. If you know you have a tick bite, or even merely have a strong suspicion, contact a Lyme literate doctor *) immediately. Forget the GP, most of them don’t run the right tests, and don’t know much about the illness. There are differing opinions about how long it takes the tick to transmit the spirochete (bacteria), but it can be anywhere from a few to 48 hours. If you have the typical first symptoms of infection, fevers, chills, stiff neck within 2 weeks of the bite you should most definitely go on antibiotics and Lyme experts say for at least 4-6 weeks (doxycycline), not the standard insurance covered 2 weeks.

*) I have several names if needed

3. Check your dogs and wash them thoroughly after hikes and/or if they hang out in your garden, they can carry the ticks into your house.

4. Be careful when you remove the tick, if done inaccurately, your chances of getting the bacteria might be higher. Refer to information by www.ILADS.org



More info:

There are many myths and faulty notions surrounding Lyme disease, including the idea that everyone bitten has either a visible tick stuck to them and/or have a bulls eye rash at the site of the bite, neither of which has to be true.

There are two main opinions about diagnosis and treatment of Lyme disease and two camps of medical practitioners divided by the diverging beliefs. This has gone so far that well regarded doctors, who have treated patients with long-term antibiotics until the patient got better, have been prosecuted and their licenses removed, in spite of evidence of the need of long-term treatment. So, on top of being a complex disease itself for doctor and patient, it has further been complicated by being turned into a highly politicized issue with the insurance companies right in the middle of it all, stoking the fire and not paying for treatments.

The CDC (Center for Disease Control=federal agency) mentioned before, stubbornly holds on to old guidelines that stipulate that a 2-week course, up to one month is appropriate and sufficient to treat the disease, absurd in the face of research and clinical evidence.
This is great for insurances of course.

ILADS (International Lyme and associated Diseases Society, not a federal agency) on the other hand, being the most credible organization dedicated to research and information about Lyme disease supports the idea of the necessity of long-term treatment to eradicate the infection.

It estimates further that up to 65-80% of infected people never saw a bite or the tick for that matter (I did not) and, almost as an inevitable result of that matter don’t know that they are infected until they, already in a later stage of the disease, start to have a multitude of unexplained physical issues at which point the treatment requirements have increased dramatically.
Consequently, for most people it takes an average of 22 months and 7 different doctors (which is exactly what happened to me) until they are finally correctly diagnosed for the following reasons:

• Very few doctors are literate in the diagnosis and treatment of Lyme disease so misdiagnosis becomes almost inevitable. Very few doctors want to deal with Lyme disease because it is a frustrating, long term ordeal with uncertain outcome and insurances do not cover most of the treatments because as mentioned above, the CDC’s guidelines do not recognize long term antibiotic treatment as necessary for Lyme. Insurances find their safe haven in those indisputably wrong guidelines.

• Symptoms of the disease mimic several other illnesses including but not limited to Multiple Sclerosis, Arthritis, Fibromayalgia, Alzheimer’s disease, Lupus, endogenic depression and Chronic Fatigue Syndrome.

• Because the symptoms are so wide ranging and regular blood tests don’t normally show anything unusual, patients are not so rarely sent home with the remark (thinly veiling the doctor’s conviction that they are hypochondriacs) to cut out stress in their lives.

• Even the best blood tests (Western Blot, IGENEX Labs) don’t always capture the infection because the bacteria is able and prefers to lodge and hide in poorly oxygenized tissues, such as bone marrow, brain tissue and cartilage, so it tends to avoid blood for that very reason thus making it hard to pick up in a test.

So, in short, it is complicated and certainly better to not get it in the first place!

Best wishes to you all!

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