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Well below is the letter I sent off just a few moments ago...I feel better...this has been weighing heavy on my mind....Thanks Ticker! :D


Dear P-,

Thank you for the email. We still talk about our vacation at the "Shack", it was truly one of our best vacations ever. We have since moved to North Carolina.

I have had the hardest year of my life and it has been confirmed through blood tests that I am dealing with Lyme Disease, and two tick borne coinfections, Babesia and Ehrlichia. At this point it is chronic. My husband Chris has tested positive for just Lyme although has not been tested for all coinfections except Babesia which came back negative.

It is amazing the ignorance that exists in the medical community regarding tick borne illness...it took me 6 months to get a diagnosis and this is only after I did my research and found an LLMD to see. I even went to Johns Hopkins and while the Infectious disease doctor felt clinically it was what I was dealing with all the tests came back negative. I tested for it in the beginning but all ELISA tests were negative before a Western Blot was done 5 months later. Such a typical story I am now finding out. I finally went through Ig***** in Palo Alto, CA for testing.

It has been a living nightmare and basically there is not one function or system in my body that has not been touched by this...I have neurological, cardiac, and central nervous system involvement at this point thanks to my lack of knowledge previously and the majority of physicians lack of knowledge.

I do not remember a tick bite and will never know where I contracted it. The only tick I ever remember having been attached to me is when I was twelve years old in MD. I really think after all that I have learned about how small they can be that I may have had multiple exposures at this point but I do believe that one of them happened while at the "Shack".

While vacationing at the Shack I had a three hour long bout of double vision and just strangeness. Unfortunately, I had taken an acetaminophen product for pain I was having in the morning and then went to the store to get something more and all they had was ibuprofen so I bought it and took it four hours later. I thought the two had interacted together after reading the box to not take them together. I decided to give it time and wait it out and not visit the ER. I have later found out that if taken that far apart the medications would not have interacted in that way...as well I have heard similar stories as mine from visitors to Nantucket who luckily did go to the ER. It is so unfortunate because I normally never take medication for anything but this particular day was having pain that I could not bare.

After our vacation I started to develop relenting back pain in the morning and hip pain. As well, I was having breathing problems and exercise induced fatigue. I managed to get through a year and a half without too many extreme health issues other than these nagging issues but then after moving to NC I became extremely ill May 2004.

While I did not find attached tick on me while in Nantucket, I did find two adults crawling on my legs while I was sitting at the end of the pier walk down to the beach. Every morning I would make my coffee and sit there and watch the ocean...to the ticks I am sure I was fresh, prime blood.

I was poorly educated about lyme disease, didn't know a thing about coinfections before I started this journey searching for my diagnosis. I always thought with lyme I would get a rash, take 2 weeks worth of antibiotics and would be fine. How wrong I was...Truly the way our lifestyles are I most likely would have contracted it one way or another. We are big hikers, have lived in MD, VA, MA, and now NC and I realize that these diseases exist just about everywhere now and it is mostly ignorance in the medical community and lack of public education that is perpetuating this myth that lyme and coinfections are only in the NE and that a bull's eye rash must be present if infected.

I realize that my lack of education about tick borne illness played a large role in my contracting these infections. If I had known what to look for, to do regular tick checks, and that ticks could be as small as they can be I would have had the tools I needed to protect myself. I would have also brought repellent with me on my vacation.

Peter, my intention in emailing you is to request you consider ordering some pamphlets on tick borne illness and leaving them in the Shack for people. I realize that it is not exactly a conversation you want to have when people are considering vacationing at your place but I think it could be an opportunity to educate people. It is a chance to bring to light the realization that these infected ticks could be in their own back yards and anywhere in the US, not just on Nantucket.

These are the best two pamphlets that I have come across so far... listed the pamphlets but can't here...

I feel the Nantucket's Chamber of Commerce should be funding a program for people to use Da**** tubes on their properties to eradicate the ticks on mice where lyme and coinfections originates in the first place. I don't think killing off the deer population as they have been attempting to do is the best or first line of defense since mice is where the disease originates.

I have put off writing you because I did not want to make you feel badly. My hope is that my experience will somehow help someone else. After experiencing what I have I need to believe that I can create something positive out of it. That is my goal here...not to point fingers or make accusations. Quite honestly now understanding the prevalence of these disease/infections if it hadn't been Nantucket I would have contracted it somewhere else I am sure.

I hope you have had a better year than we have. I do want you to keep me on your list because I am hoping one day to make it back to Nantucket. I can say while this year has been the toughest in my life I am a better person for it. I do love Nantucket and one day hope to get to sleep on that screened in porch with the Ocean lulling me to sleep with it's mystical lullaby again.

Thanks for reading this Peter and your consideration.

All My Best,

Gretchen





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