Age, gender survey of those affected

Epidemic area of California, in northern California? hmmmm, we might be neighbors, but my area is not considered epidemic. I'm near Truckee.

Are you in the Austin Creek near Guerneville?

I am 50 yrs old now. 42 when I started with symptoms. Very very active and physical. I was the energizer bunny...never ever stopped and felt fantastic even though I am a type 1 diabetic I was doing great!

I live in southeast Pennsylvania. Epidemic area. I spent all my time outside. I walked miles everyday in the woods with my dog. My lab lived a long life....15 years old, healthy till the day she died. So no lyme for her even though I often got ticks off of her. In fact, if she seemed a little listless, I would search her body and alway, always pull an engorged tick from her, but as far as I knew, she did not have lyme disease. I pulled two ticks off myself in my entire lifetime. Thats it! 2! Was one of them the one that got me? Or was it many ticks that infected me over the years?

Even though I live in such an epidemic area, no dr ever looked at my long list of symptoms and said maybe I had lyme until I moved to the next county over, which was last year. I never knew anyone in the town I used to live that had lyme. That is only one hour from where I live now. Everyday I meet people in my new town that have lyme. Crazy! Sadly most of them believe that 2 weeks of doxy is all they needed even though they are still very sick.

Also, lyme education is very lacking. I honestly thought that unless the tick was on me for over 24 hours I would not get lyme. I also thought I needed to have a bulls eye rash....even though my body was covered in rashes, it wasn't a bulls eye rash. I also, sadly, had no idea how sick a person infected with lyme gets. No idea at all until it was me.

So thats me in a nutshell. Healthy active middle aged woman who didn't look or feel her age. I hope to see that girl again cause for now she is a distant memory and I don't even feel like the same person who I used to be.

Austin Creek - pertaining to your comment that your dr thinks that one tick caused your relapse. According to my llmd that is correct. My llmd is adamant about being really careful about getting bit again. He tells me I will be much, much sicker on the next tick bite than I am now. How is that even possible? But, I sure as heck don't want to find out.

I didn't really answer all your questions. I'll just say I've lived surrounded by forest for the last 35 years, exposed the first time around 31 years ago now, got sick and couldn't get a proper diagnosis until last year.
Now I'm 65 and it's caused quite a bit of damage to me by now.

I can't afford an LLMD. My Internist gave me abx for about 6 months and can't/won't do more.
I'm going to go the herbal route,and have gotten Stephen Buhner's book Healing Lyme second addition. Between that and these wonderful people on this forum, I'll figure it out.


Self education is our best bet. We're all learning that the hard way.

I'm certain I had mine for months or years before my symptoms started. They began shortly after a concussion, and my doc says that it can be triggered when our immune and other systems go out of balance through an emotional trauma, car accident, etc.

I'm 61 female and live in Kansas. I've grown up hunting, fishing, and camping so probably had tick bites but don't really remember them. The one that got me was when my husband and I were cutting bushes and little saplings around our home. I live in a small town, no acreage. Kansas isn't supposed to have Lyme LOL!! I was lucky as I developed the bullseye rash and my family doctor recognized it. I'm beginning to get better after two LLMDs and 13 months and counting. I actually laughed the other day for the first time in months! What a breakthrough.

nberg said...
33 year old male grew up hunting/ fishing / cutting wood on a farm been bit dozens of times. and oddly enough 1 of them that probably infected was in navel as well. funny how these work

You guys just reminded me I used to have to split my own firewood. My Mother's neighbor/friend cut on our property and shared halves with me, but I had to split it, and stack it.

When I had my first pain attack in my chest on the heals of shingles and pleurosy diagnosis, and found out it wasn't a heart attack, I went around claiming women shouldn't chop wood, or do any of the other heavy jobs I was doing like clearing land, putting up fence, etc, if they weren't used to or built up to it.

I thought I had damaged myself by forcing my upper body to do these things with no previous building up to it, and had ruined the connective tissue in me.

That is the first I've thought of that in a very long time! I was really fishing for an answer, and it took 30 years to find it.

First, thank you everyone for sharing your stories.

Yes I live in a beautiful place, with lots of ticks. I've had 5 bites in a day. I spend half my time near Point Arena, Ca, which is another epidemic area, been bit by a lot of ticks there too, so I'm probably harboring some different strains of bb, lol, at least I can laugh about it a little.

The reason I ask about education level is I recently read a book where someone interviewed one of the people that helped construct the IDSA guidelines for treating Lyme. He stated that the one common characteristic of people that developed chronic Lyme was a lack of higher education. Personally I think that has to be bunk info. Insulting to the chronic Lyme community. I've been thinking about it and The one reason it could possibly hold some weight is that people don't know to go get treatment when they get the bullseye. I know I didn't, I pulled up my shirt to show people in my family the dinner plate sized bullseye, everyone was like "whoa" no one suggested I see a doctor though. Really regret the decision to not get treatment immediately.

One of the hardest things for for me has been lack of support from my family. Some of my earliest memories were multiple trips to doctors offices for many blood tests, mostly due to an unknown rash. My mom would get me a ninja turtle toy every doctors visit, and I had about 20-30 of them by the end. Another vivid early memory is mom pulling ticks out of my scalp. I questioned my mother about my medical history as a child, and she really wouldn't tell me what happened, just dismissed my question saying that was nothing, end of conversation.

I worked with my pops building a barn and doing a deck remodel this summer, I would tell our builder to do something(I am the owner of the property) and my pops would undermine me after I left the site telling our builder to do the opposite saying I wasn't thinking clearly due to my Lyme, when in fact I was feeling fine and pretty lucid. Like tearing off an additional 1000 square feet of deck that was perfectly fine. Imagine showing up at your home and your deck is gone, then someone telling you you're the one losing it, good way to drive someone crazy...

Sorry, I feel like I'm ranting a bit now but feels good to get this stuff off my chest. Keep the stories coming people! I love it.

No, surveys are not allowed on here without prior Admin approval. It keeps our information more secure this way.

Rest easy in that the statement about those with a lower education are the ones getting these infections, we've quite literally had M.D.'S, Rocket scientists, Nurses, and many other highly educated people in this forum alone that have these infections. It's just more misinformation that's out there - even though this misinformation is particularly disgusting.

I am 40/female. I was always very outdoorsy, and live in "the woods". Before my pain started I was running up to 7-8 miles a few days a week, hiking, biking, working outdoors, etc. When the pain started it mostly affected my lower back, running, stretching and other exercise became painful and eventually impossible. Other activities have been diminished as well, even long walks. I had no idea why this was happening and getting worse. I had no idea my back pain was going to be lyme. Then it spread to my achilles tendon and soles of feet, and walking down the hall is sometimes very painful.

I am educated, and work in a professional environment where reading comprehension (legalese), writing, multi-tasking, prioritizing and time management are just some of the major skills required to function on a daily basis. I started to lose my reading comprehension and writing, my short term memory was becoming terrible, I was unable to think/process two things at the same time, and these have waxed and waned since starting treatment 2.5 months ago.

Quite honestly, in my reading on this board as well as other sites, including MD blogs and papers, etc., the most common profile seems to be someone who is active, high functioning, into the outdoors in one way or another (working, hiking, gardening, etc.). That's what tells me there is really something wrong with the way this disease is viewed by some MDs. These are not people who want to be sick, depressed and diminished. These are people who want to have their lives back and don't know what happened to them. Some outside the Lyme world would say it's just aging, but I'm sorry, even at 40, most active adults don't just lose this without some trauma.

Post Edited (njfillet) : 10/31/2016 9:15:07 AM (GMT-6)

I'm 38, female, engineer with an MBA. I grew up in rural Indiana and had numerous tick bites as a child and never thought anything of it at the time. During the summer, it was an almost daily routine to pull ticks off the family dog. I've had mild symptoms for as long as I can remember, until I gave birth to my son, who had congenital Lyme. Then my symptoms became much more severe. I sought help for what I thought were hypothyroid symptoms, and wound up with a Lyme diagnosis.

I think that financial status is probably more relevant than educational level. Yes the two can be linked, but are not mutually exclusive. Hard times befall some of the most highly educated.

I say financial status because when people don't have the money to travel great distances, and have to depend on their family doctor or local specialists to treat them. They often can't go searching for other opinions all over the place, especially if it can't be covered by some sort of insurance. These are the ones that end up treating themselves, but many waste decades before they ever come close to knowing for sure what's wrong with them.

My first introduction to all this Lyme infection info came from a French acquaintance that has sought out treatment for himself and his wife, all over the world. He says he found the best treating Drs. here in the States.


My friend in France is very highly educated, and still relatively well off. He did get himself better, but his wife still has problems they are trying to get 'fixed'.