Yes I have had some experiences with it. It's important to be treated with antibiotics for a long time to be sure to wipe out the bacteria...I was on them only for a week and had a recurrence. A month of doxycycline took care of it for me. But the longer it's active in your system, the worse it gets.

My husband had it this summer, and when he first got it he felt a bit ill, had no appetite, etc. He was diagnosed quickly (he had a very obvious bullseye rash), was treated for 3 weeks with doxycycline, and recovered well.

A gal from New York (I believe "Alisande"?) has posted about it. She has had

a terrible, terrible time with it. I don't think it has ever left her entirely. Hopefully, she will see your post.

Don't know. I went suddenly deaf around 8 years ago. My newest ENT wants me to be tested for it at my next blood panel which will be coming up soon. I guess I'll find out then.

My husband has chronic lymes dz. It wasn't caught soon enough. Initial symptoms were sever fatigue and muscle aches. Finally after treatment with antibiotics the fatigue went away, but still has off and on muscle aches, and he also has a mild cognitive disorder from it. There is still a lot of unknowns with lymes dz. That is why the Internet is vague with info. He will always have the lymes. Since they still don't have long term info on the dz they don't know if the cognitive disorder will progress or not. It is a nasty dz.

My X SIL (30s) was in ICU with a heart attack from lymes and my nephew (20s) coded twice in the ambulance on the way to the hospital from lymes.

Yes, you must catch it early. My one friend ended up needing home health care for a year she was so sick. Another one had Bell’s Palsy in his face, although he has recovered now.

https://www.cdc.gov/lyme/treatment/index.html

Not personal experience but, coincidentally, was talking to someone today who was dx'd last summer. He described terrible pain (excruciating headaches in particular) but was treated early and is symptom-free now.

They are testing a vaccine for lymes . But you know it takes years to get to the public .

Lyme's disease is nasty stuff. In early stages, it mimics arthritis and can be missed.

DSII and our little Westie both got Lyme's. DS had the classic bullseye rash so we caught it early. Treated successfully with antibiotics.

Same thing with the Westie--caught early & treated. This was quite a few years ago. The new pup has had the vaccine & booster. The efficacy of the canine vaccine is kinda' iffy (for lack of a better word) so you must be vigilant even if the dog has been vaccinated.

Family has had it, as well as friends. Both Lyme and Babesiosis. This is why I spray all of our outdoor clothing and shoes with permethrin:

https://sawyer.com/products/permethrin-insect-repellent-treatment/

There are a lot of unknowns with tick-borne diseases and the effect on a person is variable. Bulls-eye rashes only emerge in a small percentage of those that have been bitten by ticks. My brother had Lyme carditis, very scary.

Both my supervisor and a co-worker’s spouse have had Lyme and Babesiosis; watching them and their families struggle to manage the disease and find a physician was enough to drive me to prevention via permethrin. They both have cut out all sugar and that was key to them recovering after the antibiotics.

My brother called me at work (he has NEVER done such a thing) and described a racing heart and palpitations while driving on I-95, scared him enough to pull over onto the shoulder. [I work in healthcare and am the default frontline medical professional for my family, though I am not a doctor]. It sounded like an anxiety attack though he has never had one before.

A friend picked him up and took him to her physician, the doctor took one look at him and sent him to the ER. Thankfully, and incredibly, the doctor there knew almost instantly that he had Lyme carditis and started treating him. Gratefully, he recovered quickly. He lives in NJ, works in NYC. In general, people underestimate the prevalence of ticks, they think they are only a problem if you are going deep into the woods, they are wrong.

A lesser known problem is the alpha-gal allergy which is caused by Rocky Mountain Spotted Fever—it causes an allergy to red meat and the illness is vectored by ticks. https://www.npr.org/sections/thesalt/2018/06/25/621080751/red-meat-allergies-caused-by-tick-bites-are-on-the-rise

I hope your friend gets the treatment she needs.

There is a third tick borne disease that was common among dogs and probably people in the area my in-laws lived but they never spoke about humans. It is Ehrlichiosis. Causes similar symptoms and can be overlooked.

Although it may not be given now I had the Rocky Mountain Spotted Fever vaccination in the late 1960s. Something to ask your doctor about if you live in an area that it is common.

I would like to thank all of you for responding. You confirmed my thought that this disease in not well understood, difficult to treat and has varied symptoms. My friend never got the bullseye rash which seems to me would be the most obvious symptom. We think the bite occurred while we were in Maine about a month ago. She started feeling horrible about 2 weeks ago with large joint pain and raging headaches. She has now been on meds 1 week and today is the first day that she is having slight relief in the headache but the joint pain continues with no relief at all. We live on the South Florida East coast and the doctors seem unconcerned. We will search for a more informed health care professional. Thanks again for your help.

It's an insidious disease and makes summer not fun anymore. If a person isn't freaked out by ticks, there are mosquitoes carrying many diseases like the deadly EEE one and West Niles. Maybe your friend's bullseye was under her hair . I have pulled ticks from my head. I've pulled them from my neck after getting one in my own back yard. My dogs are on preventative tick meds. Wish there was one for humans because it is a horrible sickness to deal with. A friend of my husband spent his whole summer in bed not being able to even have sheets touch his body.

because it hasn't been reported in my area. I told him that was most likely because the doctors here... probably never heard of it. Or suspected it even if they had. Or bothered to report it if they didn't have confirmatory labs.

My DD was diagnosed and treated for it when she was a child -- but getting both was a struggle then (26 years ago). She had the rash (never saw a tick) and was low energy - didn't really complain of headache or joint pain. I took her to our PCP, was told it was just a spider bite. Took her to urgent care - he had nothing to say or do. Finally made an appointment at Children's hospital where they started her on the appropriate antibiotic and drew serologies; emphasized that I needed to bring her back in a month. Unfortunately the next appointment was in July so all the staff had changed over; the MDs who saw her then said "whatever was wrong is over now" and wouldn't order the followup serologies. She seemed well so I didn't persist.

She's been struggling with lots of migraines in the past year and I sometimes wonder if it is related - she never had migraines at all until she was about 30.

I worked in clinical research with an infectious disease specialist for a number of years. He was seeing a patient who suspected himself of having chronic lyme, which Dr doubted because "we don't have it in this area." When I told him DD had been treated for it he was quite surprised and made the "none has been reported" comment also.

The same is true for West Nile virus, which another ID specialist at work suspected I had. Flu - like malaise, persistent headache for 6 weeks, chills, persistent fatigue, hoarse voice that lasted for several months. My PCP said "Probably nothing" and offered me antibiotics -- at that time there was no test other than a spinal tap which I chose to skip once the ID doc suggested West Nile. Not officially diagnosed, not a "severe" case ( but definitely not "mild", it actually left me with a couple of cognitive issues) so once again, not reported. There is not treatment for it still.

Just an FYI. Many diseases are not on the list to be reported to health authorities which is why the doctors do not know about diseases being in their area unless they either have a patient or see something like the bullseye that is easily recognized.

Speaking of the bull's eye rash, a doctor recently told me something I hadn't heard before: She said the rash doesn't necessarily appear at the site of the bite. When I had a bite this summer (actually three of them, including one I discovered in my doctor's waiting room) she examined me all over, looking for the bull's eye.

With all the bites I've had over the years, I never saw a bull's eye. Only once did one appear, and although no bite seemed to be involved I was persuaded to have it looked at in the ER. They gave me a quick Lyme test, which was negative (of course), and then pronounced that I probably had punched myself in the collarbone in my sleep. Brilliant.

Gigi, the person I mentioned upthread who was dx'd with Lyme last summer also lives in Maine. Similar symptoms as your friend (headache and joint pain). His doctor doesn't believe it can continue to cause residual effects after being treated. I was shocked he would believe that as it is contrary to everything I've ever heard about Lyme disease.

“Punched myself in the collarbone,” that’s a good one. Oh my, doctors never fail to amaze me.

Use permethrin on your outdoor clothing; spray your shoes, socks, pants, jackets and shirts (hats when cold). No one should be getting tick bites when they are preventable, certainly not multiple bites. I spray all of our outdoor work clothing and camping gear. You can go to InsectShield and send them your clothing to be permanently treated (same thing the military does and now, Maryland’s DNR).

Having watched ticks climb through a tiny space under a screen and having had dogs and cats ticks can come into your house. The last tick I found crawling on me was while I was in bed. How it got into the house who knows but it was there. I caught it before it bit.

I would urge you, your friend and anyone else who suspects they have "chronic Lyme disease" to practice due diligence.

The symptoms ARE very real but their "cause" being a long term infection with Lyme disease is seriously questioned and, in fact disputed by all reputable medical sources.

I certainly wouldn't want to jump on the bandwagon of radical lifestyle changes and long term antibiotics for something that doesn't even show up on a test.

A lot of "Lyme literate" doctors are no better than charlatans, prescribing extensive antibiotic routines and other extreme lifestyle changes that are of questionable benefit.

This article is interesting. Hopefully there will be answers for those who have Lyme. Definitely the number of ticks who carry lyme is on the rise.

https://www.sciencenews.org/article/ticks-lyme-disease-testing-new-approaches

The symptoms ARE very real but their "cause" being a long term infection with Lyme disease is seriously questioned and, in fact disputed by all reputable medical sources.

Not all, TexasGem. I can't imagine anyone is familiar with all reputable medical sources.

A lot of "Lyme literate" doctors are no better than charlatans, prescribing extensive antibiotic routines and other extreme lifestyle changes that are of questionable benefit.

Some are, of course, just as some MDs and DCs claim to know more about a condition or treatment than they really do. You have to do your research, seek recommendations, etc., and not automatically believe the spiel no matter how much you want to. For starters, I would be suspicious of anyone who advertises.

I'm wondering what those "extreme lifestyle changes" are that you mention. Improved diet? More sleep? I think everyone, Lyme-infected or not, can benefit from those.

I can state with confidence that the neurological symptoms I live with now started with a tick embedded in the back of my neck a number of years ago. I can also state that my babesiosis (also contracted years ago) is cyclic, and when it flares, it's obvious. I take no meds for either one at this point.

Also, my DD seemingly got hers in the back yard, probably from playing around the stack of firewood where mice lived. Deer ticks live on mice in an early developmental stage, and are able to transmit Lyme then also.

I make tick tubes and put them out in April and July. We also get our lawn treated for ticks. We use to like lots of trees and vegetation in our yard. Now we have one large maple and a small cherry tree. All of the rest of the shrubs, grasses and trees are on the edge of the property. Ticks like cool , moist, and dark. They don't like sunny lawns, gravel, or concrete /asphalt. I am trying to make a tick free Zone around the house. So far so good.

I encourage the possums to visit during the winter. When it starts getting warmer they return the favor by eating fresh food in the form of ticks and other bugs. My conservation department has had several articles about how possums eat many ticks.