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I only had a hazy fear of Lyme disease up until today. Summer vacations at our cabin in the woods always included my mom checking our hair for ticks, a tradition I still carry on with my young son, but I didn’t know much about the disease. I just knew to be concerned and look for the little black bugs. I had no idea how many lives this disease had ruined or how difficult it can be to diagnose and treat.
But tonight I read Jessica Duquette’s informative post about Lyme Disease and I was shocked. I spent two hours reading different sites educating myself about this controversial disease.
Jessica linked to an upcoming documentary by Open Eye Pictures called Under Our Skin – The Untold Story of Lyme Disease. This groundbreaking film investigates:
…the shocking human, scientific, and political dimensions of Lyme disease. As the film delves into the lives of those who have been inalterably changed by the disease, a haunting picture emerges of our health care system and its ability to cope with a biological terror already lurking under our skin.
Click here to see the movie’s incredible trailer.
For a quick overview of Lyme Disease click here and here. Another great resource is a site called Living With Lyme.
I’m grateful that Jessica brought this important information to my attention — I didn’t realized how serious the epidemic of Lyme Disease is. I think it is critical that we all help spread the word as so many of us still remain uninformed about the threat, diagnosis and treatment.
Have you or anyone you know been affected by Lyme Disease? Do you live in one of the high-risk areas of the continent?
Sarah Olson says
I was bitten 8 years ago and got very sick right away. We have 17.8% MIR in adult ticks here in Aptos, California but all the doctors think it is not here!! I w as on orals for a year but kept progressing with progressive muscular weakness, slurring, chorea, choking, fibromyalgia, IBS, MCS, CFS, MVP, incipient dementia. I could no longer walk across a room or rise without assistance. I no longer knew my 2 year olds name!!!! Then IV Rocephin saved my life- 9 months of it- the first 6 months no change. Then LIFE! I have been at 99.9% for 6 years now. Life is good.
But the CDC does not recognize Lyme for what it is and the IDSA is going after our doctors for over-treating with antibiotics. I needed 9 months IV after a full year of orals.
Nothing else worked and I was full tertiary Lyme disease.
Our local support group has had 5 people diagnosed MS who all got better, 4 ALS, 3 got better, one died… And all that said, the biggest problem in California in tick-borne disease is a lyme coinfection- WA1 Babesiosis, which most doctors have never even heard about! Life IS stranger than fiction.
Sincerely,
Sarah Olson
Aptos, CA
Beth says
I was dianosed in 2002 with Lyme disease and 2 coinfection’s.I live in area of Missouri where ticks are a part of everyday life.i am told by my doctar that i am in a remittic phase.In 2002 I received 6 weeks of oral med’s .because i had gone untreated for many years I sufferd a huge bactreial die off when i took the antibiatics…the toxic die off caused me to have siezures and was left in a parkinson type of syndrom for a year .I had to stop the treatemnts as i have had this misdiagnosed too long and know have high bacterial load and the slightest die off will be very toxic for my system.I pray i never go back to the shaking all over or the loss of speach.family memebers think i am just crazy or bipolar…which I sapose I am,after 29 years of bacteria eating away at my brain and nerve tissues I would have to be nuerologically messedup .Thanks for trying to help others learn
Amy says
I am dealing with Lyme’s now and I’m miserable. Thank you for this post. I’m browsing trying to find others out there! Thank you! Amy
Christine Cibula (AKA CC) says
Dear Janice,
Thank you so much for bringing light to the issue of Lyme Disease. I have two sites with a lot of patient information http://www.LivingWithLyme.com and http://www.LivingWithLymeBlog.com that is the best of the best information I know to share about Lyme Disease and Related Tick-Borne Co-Infections. On average a tick carries 13 bacteria, viruses, etc., so always be aware of changes in loved ones following bites.
I also have a Living With Lyme Ezine that goes out with the most up to date information in it ([email protected] if you want to subscribe directly from here). When patients get sick, time is of the essence in getting the appropriate treatment and care.
I have started working with the California Lyme Disease Association and National Lyme Disease Association to put out press releases regarding the new 2006 IDSA Guidelines that are already being used to deny Lyme Disease patient care. Cait gave the link to the LDA petition in her comment above, so please do go sign the petition http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1
My story is common. I was bitten in 1988 when I was in Stillwater, Oklahoma, and went undiagnosed and untreated for 11 years. I had a lot of peripheral neuropathy. In 1999, I got a second bite in Borrego Springs, CA and became extremely sick within three days (this is known as a secondary bite that reactivates an initial infection).
People who have been sick long-term who get the appropriate antibiotic therapy treatment can have significant improvement. To learn more, please visit my sites.
Thank you Janice for sharing… Cait wishing you well in your continued healing…
With Love & Light… :)CC
Susan says
Cait,
I am so sorry to hear you’ve got Lyme and that you’ve been sick for so long.
I of course signed the petition and I hope everyone who sees this post also signs it.
Thanks,
Susan
Cait says
I have Lyme. I live in a part of Massachusetts where the deer and their ticks are out of control. I was sick for about three years before getting tested and diagnosed. I am entering my fifteenth month of antibiotics. Life has become quite difficult for the last few years, to say the least. I was not sure if everyone knew the IDSA has changed its guidelines for treating and diagnosing Lyme– the fact that IDSA will no longer allow long-term antibiotics is one of the biggest changes– The Lyme Disease Association has a petition protesting these new guidelines– please sign! http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1
Thank you for your help– every signature makes a difference!
mcewen says
When we first arrived her a Pal of mine listed the many dangers of living in California, bears, cyotties, the squirrels that carried some kind of plague, ditto raccoons and rabies, bob cats and ticks! I thought I’d been transported to a third world country rather that the most advanced! Still we all adjust given time. I think perhaps newcomers are warned and that it’s people who have been here a long time miss out on such information – Cheers
Laurie says
My sister-in-law Debby has been battling this for about five years. There are times she feels good enough to go on Mission Trips to Mexico (though she always has to take things gingerly) and times she can’t hold her head up. It was a battle to get a doctor who would finally work with her.
We live in a very tick infested area and I just personally don’t let myself get too worried about it. We live in the woods and get ticks even in our yard. My husband will come home from horse-shoeing with literally dozens of them on him. To worry would ruin our lives, so I pick them off and gleefully flush them down the toilet!
Dawn Irons says
Janice,
Thank you for your post on Lyme Disease. It is definitely NOT just an “east coast” disease anymore! Here is TEXAS we are having a fight for our life in just getting treatment. Doctors here will not treat it at all for fear of losing their license. I travel out of state for medical care…along with the other 80% of our DFW Lyme Disease Support group!
Keep up the good work in spreading the news. Take a peek at this newspaper that specifically targets Lyme Disease and various other chronic illnesses for public awareness. The Public Health Alert can be viewed online at http://www.publichealthalert.org. Click “in this issue” to read the current paper. There is also info on odering bulk copies of the paper for the cost of postage only.
Thanks,
Dawn
Barb says
We’re very aware of this in Colorado. The scariest thing about it is that it’s so difficult to diagnose. You’re doing a great service by putting this information out here, Janice.
Jessica Duquette says
Thanks so much you guys for helping spread the word. I know CC, of Living with Lyme blog had no idea what was wrong with her for years!
It’s something we all just need to be aware of.
big love,
Jessica
Heather says
My Sister in law got Lyme Disease on vacation. Apparently, when hurricanes wash away a lot of sand, they bring more in from the dessert and something in the new sand was a carrier. She never knew she had even been bitten, but she went to the doctor for her fatigue and joint aches. About 2 years later, she started losing her hearing from the nerve damage she sustained as a result of the lyme disease. She is 41 and has to wear hearing aides.
We are very outdoorsy and I check hubby and the kids a lot. I’m thankful to have boys with very light blond hair. I can keep it really short and it’s easy to check for ticks.
Thanks for all the info!
Mama Lily says
I do have friends with Lyme. They live in Dallas. She describes her experience this way Thanks for getting the word out to so many more people.
KellyC says
We do live in an area where we’re constantly looking for ticks. I had no idea the problem was this severe, though.
THanks for sharing this information!
Lauren C says
Thanks so much for spreading the word. I found out a yr ago this month that I have late-stage lyme. I have had it for 12 yrs now.. pages of symptoms with no explanation until that pt. was diagnosed as many are – with CFS and FMS. Today I found out that it is very likely that my 11-yr old contracted it congenitally. Luckily there is hope but the treatments take many yrs. I am up for it and I know he is too thankfully. You must find a Lyme Literate Dr to treat it (LLMD) properly.
watch the movie if you can – many showing around the world. It is truly an epidemic! be well
marina says
hi, ironically in costa rica, we’re surrounded by ticks but gratefully they don’t carry any lyme disease. my husband sometimes comes home covered in them. and everytime i’m scared to death he’ll get it