Category Archives: Lyme disease and ticks

Lyme is an epidemic

It’s very upsetting to me that there seems to be little acknowledgement that there is a Lyme epidemic going on in the US.

Instead, in 2016, we hear about the few cases of Zika virus [update… Zika causes an autoimmune disease! http://scientificamerican.com/article/scientists-find-zika-increases-risk-of-rare-neurological-illness/%5D. And yes, this can and will continue to get worse too, but meanwhile there are millions of cases of Lyme each year. Many will get caught soon enough (typically within a month) to treat successfully with a single 20-or-so day round of antibiotics. But many won’t. Here in Massachusetts, I personally know probably 10 people who have had Lyme and treated OK, and another 3 who are having ongoing long-term effects and still under treatment.

Some other comments:

1. The IDSA (from 2006!) guidelines probably need updating.

2. It’s been my experience that most people who have gotten to the bottom of their Lyme has been a result of SELF DIAGNOSIS. Doctors for the most part are misdiagnosing Lyme, which is shameful.

3. I am assuming it’s a combination of 1) healthcare professionals (doctors, dentists) not knowing 2) concern for antibiotic overuse 3) insurance companies concerned about costly treatments for people with chronic lyme (or “post-lyme disease syndrome”)

4. There is also a huge explosion in autoimmune diseases in the last 20+ years. Many of these are difficult to diagnose vs Lyme. In many cases, a differential diagnosis is VERY difficult to make and you can find Pubmed articles discussing the fact that many cases of Lupus, Chronic Fatigue Syndrome, etc. are actually Lyme.

5. At some level, it doesn’t really matter — both Lyme AND autoimmune diseases are 1) not well understood, 2) no easy treatment, 3) underdiagnosed.

SEE:

“1,500,000 fresh infected Borrelia patients each year in Germany.”
http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_3839801.html
CDC increased the number of annual diagnoses by ten fold, from 30-thousand to 300-thousand. (and this is probably very low as well)
New front in the Lyme wars

http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
“The American Autoimmune Related Diseases Association (AARDA) estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer. It is a leading cause of illness in young women. (Three-quarters of autoimmune patients are women.) “

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Our experience with kids and lyme disease in a tick endemic area (Massachusetts)

If you live in Massachusetts or any of the other tick-endemic areas in this world, nightly tick-checks just have to be a part of your bedtime routine. Brush teeth, check for ticks.

But even that will not ensure that you or your kids don’t end up with Lyme, because guess what… in some large % of cases (including our son) one never finds a tick or a bulls-eye rash.

My theory is that the statistics for numbers of cases is still low, even after the CDC upped them by 10x in August 2013. And that also the cases are going to (obviously) skewed towards people who are active outdoors people during the non-winter months. It has been my experience that pretty much everyone I speak to not only either themselves or someone they know had a deer-tick on them, but also knows someone that has been treated for Lyme! That’s pretty scary.

Our kiddo’s Lyme symptoms:

1 – Low-grade fever (his was never higher than about 102F and was often 98.6F in the AM and spiking a bit to 100 or 101 in evening). And no other flu-symptoms. Active happy jumping around kid. Only felt lousy enough to give ibuprofen for like 2 days but the late afternoon/evening fevers kept coming.
2 – Complained a bit of head hurting when jumping up and down
3 – He noted his knees hurt a little running around one day
4 – And then finally on the day we went to the doc he did start to have a rash or 2… but they we’re those resolved within 1-2 days of starting antibiotics. (amoxicillin since he’s under 8) (I think he experienced a flare as well, during the day he began treatment as explained in BURRASCANO’s guide below. It also discusses all of the above.)

Anyway, that was enough to start treatment right away and fingers crossed that he doesn’t experience “Chronic Lyme” symptoms or as CDC calls it, Post-treatment Lyme disease syndrome (PTLDS).

The key is to advocate for yourself and read the PDF linked here:
ADVANCED TOPICS IN LYME DISEASE

DIAGNOSTIC HINTS AND TREATMENT
GUIDELINES FOR LYME AND OTHER
TICK BORNE ILLNESSES

Sixteenth Edition
Copyright October, 2008

JOSEPH J. BURRASCANO JR., M.D.

In which you will learn that the most important thing is to begin initial treatment with AT LEAST a 6-week course of the appropriate antibiotic (and dosage) and adjust according to evidence of any flare-ups which happen in intervals.

Also excellent: the IDSA guidelines from 2006
http://www.idsociety.org/uploadedfiles/idsa/guidelines-patient_care/pdf_library/lyme%20disease.pdf
“Antibiotics recommended for children
are amoxicillin (50 mg/kg per day in 3 divided doses [maximum
of 500 mg per dose]), cefuroxime axetil (30 mg/kg per day in
2 divided doses [maximum of 500 mg per dose]), or, if the patient is 8 years of age, doxycycline (4 mg/kg per day in 2
divided doses [maximum of 100 mg per dose]) (A-II).

(and the 2010 review of these 2010 guidelines)

And for a great piece of investigative journalism on the topic as you wait and hope and pray that your Lyme situation resolves completely with antibiotics (and rest, exercise, and nutrition), this is it:

Cure Unknown (Revised Edition): Inside the Lyme Epidemic, by Pamela Weintraub

and online:

THE LYME WARS
The Lyme-disease infection rate is growing. So is the battle over how to treat it.
BY MICHAEL SPECTER
JULY 1, 2013, The New Yorker

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