Lyme Disease Film 'Under our Skin' NH screening dates in NH

[Valerie C]

No, it's not rocket science. Rocket science is probably much less controversial, and definitely less hotly debated between patients, doctors, medical licensing boards & insurance companies. Just add in the snake-oil salesmen to complete the picture, because a patient, or the mom of a child with chronic Lyme will try damn near anything to get some relief...

It's fairly obvious that you sister didn't have to depend on the inept (at best) and corrupt medical/insurance system to get the right antibiotics. I'm happy for anyone who beats this disease the first time around. If 'just anyone' could get a quick script of doxy immediately after a tick bite (or immediately after symptoms start), Lyme might not be the fastest growing infectious disease in the country.

Unfortunately, the first step of being tested is the useless ELISA, which produces a high rate of false negatives. Most non-Lyme Literate MDs require a positive ELISA before they will order a Western Lyme Blot, which tests for specific protein bands. This is if a patient's insurance company will pay for the testing... And even the Lyme-literate MDs (even, or maybe especially the Infectious Disease doctors) don't agree on whether or not to test for & treat co-infections (Babesia, Bartonella, etc).

So, unless your sister can do something to help the Lyme community that has been FAILED by the medical system, please take your usual condescending attitude and your elsewhere. This is not a subject to be snarky about.

Originally Posted by SuperSparkle928

Oh geez....

The sister has a place in Connecticut, which is deer-tick heaven. She contracted it, and there is a simple cocktail of a few medicines that will obviate it (though you always be infected). But then again, what does she know? She is only a lowly MD/PhD professor in oncology/immunology at an top research facility... This is not rocket science.

[Arabel]

Originally Posted by Pawporri

Whatever you do, don't follow the old wives tale of lighting a match to the butt of an attached tick - that makes them spew everything into your body before they detach.

I didn't know that, good to know! I only use tweezers, but back when I was a youngster my parents would use the match method & would also use peanut butter (?). I'm not sure why they were putting PB on them to get them out (perhaps to smother them?).

Good info Valerie. Had no idea there were different tests out there.

[Arabel]

Well, not that it has anything to do with Lyme Disease, but I'm over 30 and use the term "snarky" from time to time. Perhaps Lyme Disease and Snarky have much in common, with their synonymous meaning of both "irritable" and "unpleasant".

But apart from semantics, I really appreciate what Valerie, GregW and others have posted on the alternative information on Lyme. It just seems WebMD and other similar websites don't provide enough information on the subject. Which is probably why there is so much alternative information available.

Since living in NH, I will definitely be paying more attention to Lyme disease & following what others have to post on their personal experiences. It doesn't seem that there's any conclusive evidence on the topic, therefore, it seems the scientific and medical communities are looking at Lyme infected patients for more in-depth education on the disease.

[Valerie C]

Originally Posted by Arabel

Perhaps Lyme Disease and Snarky have much in common, with their synonymous meaning of both "irritable" and "unpleasant".

Arabel, I agree: Lyme Disease is irritable and unpleasant, to say the least. But education is key, and hopefully this thread will continue to help anyone who has questions about tick-borne diseases. There are local support groups that can help guide those with questions to the right places.

Originally Posted by Arabel

But apart from semantics, I really appreciate what Valerie, GregW and others have posted on the alternative information on Lyme. It just seems WebMD and other similar websites don't provide enough information on the subject. Which is probably why there is so much alternative information available.

Since living in NH, I will definitely be paying more attention to Lyme disease & following what others have to post on their personal experiences. It doesn't seem that there's any conclusive evidence on the topic, therefore, it seems the scientific and medical communities are looking at Lyme infected patients for more in-depth education on the disease.

I'd never have believed that getting diagnosed and treated for an illness could have become such an issue, but it is. With good reason, people don't like to share LLMD (Lyme-Literate Medical Doctor) names on any public list or forum, for fear of that doctor being targeted for fines and license revocation. I know that it sounds way too conspiracy-theory/paranoia, right? But a little research will show otherwise: google Dr. Charles Ray Jones, a pediatric Lyme specialist in CT, to see what I mean. And here we are in 2012, with patients getting sicker, still being denied treatment.

Originally Posted by SuperSparkle928

My sister actually couldn't care less about Lyme (well obviously when herself, her relatives or my dog gets it, and the dog did, she does the right thing). <snip> If you get cancer, then, since she is part of the failed medical system, don't ask her or any of her army of research scientists to give you any help. Geez.

Ms. Sparkle, thank you for your 'input', and please attempt to keep on topic (Lyme Disease). This thread was created to be informative, not combative. Your attempt to misquote me is not appreciated-please don't do it again.

I stand by my remark that the Lyme community has been failed by the medical system. At no time did I say make reference to a " failed medical system". Those are your words, not mine. Sorry to hear that your sister "couldn't care less about Lyme" unless it specifically pertains to her. Not surprising, but sad nonetheless....

Originally Posted by Valerie C

So, unless your sister can do something to help the Lyme community that has been FAILED by the medical system, please take your usual condescending attitude and your elsewhere.

I respectfully request that mods remove any replies meant to disparage or belittle members who come here to request information. Lyme Disease is reaching epidemic proportions in many areas of the US. May is Lyme Awareness Month, and increased awareness is vital. Anyone is welcome to send a private message for more information on support groups, etc. Thank you.

[Valerie C]

Under Our Skin will be shown at the Nashua Public Library at 6 PM on Thursday, 5/24, with a Q&A session to follow.

[jenny1951]

Originally Posted by Valerie C

Under Our Skin will be shown at the Nashua Public Library at 6 PM on Thursday, 5/24, with a Q&A session to follow.

I wish I could see it online somehow...any idea whe I could stream it? I don't have cable and don't live near Nashua, but would love to see it.

[jenny1951]

Originally Posted by GraniteStater

I know of a few trails in Concord, NH city limits that have very wide trail paths.

I like Concord very much, but it's a long drive for me. Thanks for the thought though! I clipped my dog yesterday and found a tick! Well at least now I can find them easier with the short hair. He has hair like an Old English Sheepdog, thick and dense. We haven't been in the woods at all, nor in tall grass.

[Valerie C]

Originally Posted by jenny1951

I wish I could see it online somehow...any idea whe I could stream it? I don't have cable and don't live near Nashua, but would love to see it.

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[mamasplace]

ValerieC, thanks for posting about the film. It's so important that people become more aware of what can actually happen with Lyme. It means a lot to those of us who are caretakers of Lyme patients and who suffer along with them privately. People need to know how bad it can be- and it may not be cancer but for some it's no less of a death sentence. It can kill, but the cause of death is often not attributed to Lyme but to organ failure or other "complications" of the disease. (Lyme's dirty secret!)