Any experience with lyme disease?

The daughter of a high school friend has contracted lyme disease. It's been about 8 months being diagnosed and she lives in eastern Canada. Her doctors are admitting they have little experience with the disease and she may need to come to the US for treatment, which will be expensive and not covered by insurance.
Have any of you had direct experience with fighting lyme, or can recommend a good treatment facility? I'll pass on any useful info to her parents. Many thanks.

I'll talk to my wife. She's pretty close to her aunt who has been battling it for years. I know treatments over time have made a world of difference.

In reply to BlueInGreen44:
Thank you.

I've got several friends with it, it's pretty common locally but still not well diagnosed or understood. I believe the acute treatment was heavy antibiotics and antiviral drugs. One friend went encephalitic and ended up in ICU before a diagnosis was made, one didn't go quite that far. Once over the initial infection, continued maintenance is simply to treat the symptoms when they occur. Both friends have flare-ups about once a year that include two weeks of massive fatigue, decreased strength, and headaches.

Good luck with it.

The goalie on the hockey team I'm coaching this year was diagnosed with Lyme about 8 months ago. Apparently he had it for a year or better without it being diagnosed. He has been having lots of trouble with it. Seems that he has good and bad days. Heck even good and bad hours. It seems to me that the cold of the ice rink seems to make the symptoms flare up. His parents have brought him to all sorts of specialists and none of them seem to agree on anything. He gets lots of relief from going to a local spa that has an infrared sauna, and a Epsom salt bath.

All I know for sure is that it seems to affect each person differently. My niece contracted it several years ago, and seemed to be fine after a dosage of antibiotics. My coworker has been battling it for years and it seems to come and go. She uses lots of natural remedies to battle the symptoms and it seems to work.

One of my best friends from childhood has been battling it since the early 2000s, maybe longer. Rough stuff. Getting help ASAP is a huge thing. I don't have a lot to add, but there is a documentary somewhere out there. Google Kathleen Hannah, Bikini Kill front woman, Lyme disease sufferer, and wife of Adrock.

A coworker has had it for several years. Massive antibiotics early can help. Big trouble is many physicians do not understand it and insurance does not recognize it as a disease.

Find a doc who knows how to treat it!

I had it about 2 years ago, but caught it early. When the infamous bullseye red ring formed I immediately went to the doctor and they ran the tests.

IIRC it was just a good dose of antibiotics (or was it antiviral) for about 2 months. In any case they warned me not to stop the pills early for any reason.

It's a weird one because its symptoms don't manifest in dramatic ways. You feel tire, lethargic, joint pain, etc. Most people would say "that's just getting old."

Live with it long enough and it can have real mental and cognitive impacts.

Even more weird is the Lone Star Tick and it's Alpha Gal Allergy. I've got a friend with it. It changes your genetics and makes you allergic to proteins found in meat. I call it the "vegetarian's biological weapon".

So there's a doctor in Saginaw that does treatment for Lyme. Sounds like that's the only place in Michigan or anywhere else really where they know much about it. Fortunately they liked the doctor. We can probably get more details if you want.

I have no affiliations with these sites, and you may already know about them, but FWIW:

The Canadian Lyme Disease Foundation:

https://canlyme.com/just-diagnosed/treatment/

The Canadian government:

https://www.canada.ca/en/public-health/services/diseases/lyme-disease/health-professionals-lyme-disease.html

On-point news story from 2013:

http://www.metronews.ca/news/ottawa/2013/12/13/ottawa-woman-heading-to-u-s-to-seek-treatment-for-lyme-disease.html

In reply to Stealthtercel:
That last link mentions a doctor in Plattsburgh, NY. The young lady has an appointment in Plattsburgh later this month.

In reply to BlueInGreen44:
No further info needed right now. The young lady is seeking treatment in New York state for now. Thank you though.

I had it and was given MASSIVE amounts of antibiotics. Very bad time. I still get tested every year and it was 9 years ago.

I was lucky I only had it for about two months before diagnosis. Finally went to see the doctor and they did a blood test. My dock called me at 12:30 AM and told me to meet him at the ER as he had never seen test results as high as mine. I was put on a antibiotic IV for two days then was given a program of antibiotics that absolutly wiped me out. One of them kept me from being in the sun. If the sun hit my skin it felt like it was on fire. Even after the treatment was over i could not be in the sun for about a year.

The hospital treated me was Emerson hospital in concord Massachusetts. I am cured or so they say. It is a really bad thing but the alternative of not getting treatment is much worse.

Dad had/has it, he went un/misdiagnosed for a long time. Arkansas Department of Health doesn't want to admit we have it, and hasn't reported a case to CDC since '07. I could go off on a long flounderous soapbox, suffice it to say, we do have it.

Docs finally figured it out, got dad on mega antibiotics, but he went improperly treated so long, he's pretty well permanently suffering, joint pains, and fatigue.

I recently got Rocky Mountain Spotted Fever, it was terrible, I was useless from Aug-Oct, and still have joint pains. I've had literally hundreds of tick bites over the years, and never really worried. After dad and mine's tick related illnesses, I've adopted Deep Woods Off as my signature cologne for any outdoors activity during the warm months.

I kept my tick, habit I developed from my stent as a NPS ranger, it's now a framed piece of "art." I have no delusions, I know I'm weird.

I was an avid mountain biker in my mid 40's, lived in CT, and often rode in a state park that was heavily populated by deer. I often saw them and was almost hit on several occasions as they ran across the bike trails. Deer ticks that spread the disease are very small and I never saw any on me. I never got the tell tale expanding ring although I did get blue dots on my skin at the time and I didn't know what had caused them. I got Lyme disease, really bad. Went from a top world ranked BMX racer to a guy who could barely walk up a wheel chair ramp without a rest stop on a good day. Bad days were really bad and I'd be on a concrete floor in the fetal position or wrapped up in down comforters with the heat jacked to max depending on my temperature swings.

My thinking was greatly affected and I made a lot of very bad decisions I wouldn't have normally made (looking back). Once I finally sought medical attention I was misdiagnosed a few times and given meds for other things or told I had a virus and wait it out. Eventually I got some Antibiotics that seemed to help but brain function was so poor that I didn't realize I wasn't really better. Resting a few days and drinking lots of fluids is probably what really made me feel a little better. At one point a Dr. wanted to put me in hospital because of my repeated visits seeking help but I refused (brain not functioning correctly). I struggled through work days as the owner of a business with 6-7 employees and removed myself from all customer contact because I couldn't even remember things like regular customers names. Most of the time I was dehydrated and so the headaches became continuous.

I lived alone at the time so there wasn't anyone saying "You're not right, go to the doctor." During good periods I'd get a new girlfriend only to dump her as soon as a bad period started. On a mountain biking date with a new woman I got real bad miles out in the woods and it took all I could muster to ride back to the truck. I was so weak I couldn't lift the bikes into the pickup so I had to lift one wheel at a time onto the tailgate and push them in. Barely drove to her house, had the chills, rested several hours wrapped in comforters with the heat maxed in her bedroom and then went home. 1st round of medical attention followed the next day. I was so messed up I never even called her to thank her for taking care of me, apologize, or anything, just never spoke to her again.

Like others mentioned I kept thinking "I'm getting old". So I quit everything in CT and decided to close business, sell house, and move South. Turning point for me with the disease was when I made a trip to FL to buy a house. I had a bad period that started when I stopped at a friends house in GA. I stayed at their house while they went away on vacation because I thought I'd gotten the flu that had just gone around their house. Eventually I felt well enough to drive the rest of the way to FL. Then I got so sick walking was hard, I couldn't drive, and got stuck in a motel for about a month. I made realtors pick me up at hotel and drive me to look at homes, then picked one to buy. I went to local walk in clinic who gave me Doxycycline antibiotic for 10 days for flu symptoms. I told the Dr. I'd been given the same thing a couple times for Lyme. After 2 weeks I felt the same and I got a ride back there and they gave me a 14 day script for some more powerful(and more expensive)antibiotics. Around day 11-12 of that medication I woke up one morning and felt like a switch had been flipped and my brain turned back on. I waited several days expecting a relapse before driving back to CT. It was only then I realized I'd had the Lyme long after they'd started giving me antibiotics in CT.

Once "cured " so to speak I realized (several months later) I must have been affected 3-5 years thinking "I'm getting old" before I started seeking medical attention. The muscle pains slowly subsided over a few months. Most of the joint pains went away the 1st year and my knees (which were the worst) got better after about 5-6 years. I had relapses of feeling tired/achy/headache that lasted 2-3 days a couple times a year for 6-7 years and would just lay on the couch phone in hand during the relapse drinking lots of fluids. Haven't had a relapse in about 5 years now.

Up north I knew people who died, had partial paralysis, and/or other symptoms much worse than mine. So as bad off as I was it could have been worse. I lost about 5 years of my active life between the worst years of getting sicker before seeking medical attention, a year or so of medical attention, and the first couple years of recovery. I got it before there were good early testing and medication procedures. It's a miserable disease that creeps up on you slowly so you don't feel like you "got sick" I guess it's more like the diseases that often affect old people where brain function slowly diminishes at a rate that keeps them from realizing they're "not all there" anymore.

Wow. And this would be why I find ticks to be terrifying insects. I spend a lot of time in the woods riding dirt bikes, mountain bikes, clearing trails, etc, and it can be a big challenge to try not to think about the possibility of getting Lyme and then not really realizing it for quite awhile...

I'm an active mountain biker here in the deep south, as are most of my friends who have Lyme. Ticks are EVERYWHERE. The terrifying thing to me is that most of the people I ride with know these stories and STILL REFUSE TO USE BUG REPELLENT. Some because they are worried about the long term effects of the chemicals,some just because they don't like the smell.

Jaysus, people, wise up.

In reply to ultraclyde:

When I worked at the park, I'd go to the nearest Walmart and buy ALL of the Deep Woods Off they had in stock for my self and employees every Spring. That might get us through the Summer, but I usually had to supplement my supply at least once before end of Summer depending on how many employees I had that season.

Applying Off was a routine, roll pants legs up, spray inside of pants leg, hose down boots, outside of pants legs, waist, and mist the rest of your clothes, depending on what we were doing there was usually at least one re-application before the day was over.

As diligent as we were, we still found ticks crawling on us daily, and still got bit on average once or twice a week. Some of those little devils were just immune to DEET.

That wasn't hyperbole or exaggeration in my earlier post, I've literally had hundreds, maybe north of a thousand tick bites, especially if you count all the times I got into seed ticks as a kid.

In all of those bites, I've had 2 issues, one presented with the bullseye rash, and mild flu/cold symptoms, Dr. wound up calling it Southern Tick Associated Rash Illness (STARI), a few weeks of Doxycycline and I was good to go, the second was the Rocky Mountain Spotted Fever (RMSF) I mentioned earlier.

Both of the ticks that infected me were acquired in areas that I would have never expected to get a tick, and as such hadn't used any repellent. Best as I can tell the STARI tick was from my parents yard, yes they have dogs, but they're treated, and was rarely an issue. The RMSF tick was on a levee in a rice field that I'd been in dozens of times before with no sign of ticks.

That's a lot of typing just to say, you really never know if/when you'll get one, using protection or not, and even if you do get bit, the chances of actually contracting something is pretty slim. Still I agree, it's silly to not use repellent.

The other tough part is how resistant most doctors are to test for it. From what I understand it's not an easy or cheap test, so insurance can be wishy-washy.

I kinda wish we could test for tick-borne illnesses more easily and cheaply, because a lot of outdoor folks would really benefit from an annual test.

In reply to bigdaddylee82:

In addition to drowning yourself in DEET you can also treat your clothes with permethrin, kills on contact.

pheller wrote: The other tough part is how resistant most doctors are to test for it. From what I understand it's not an easy or cheap test, so insurance can be wishy-washy. I kinda wish we could test for tick-borne illnesses more easily and cheaply, because a lot of outdoor folks would really benefit from an annual test.

When I went to the Dr. for my RMSF, before I knew what it was, I listed off all of my symptoms, and mentioned having a tick bite. Tick was only possibly on me 10-12 hours before I found it. Dr. was reluctant to test for tick borne illnesses since there was no rash, and it was on me for such a short period of time. I didn't have to press the matter, but asked if they would test for tick born illness too, the Dr. said something like "If you want me to I will." It took longer, and required them to draw more blood, that was sent to another lab that specializes in tick born illnesses. With my insurance I was out of pocket about $35 every time they checked me for RMSF antibody levels, and they stuck me a lot.

BrokenYugo said: In addition to drowning yourself in DEET you can also treat your clothes with permethrin, kills on contact.

Memory is fuzzy, I recall that being brought up every year, and being shot down. I don't know if it was internal from our health and safety folks, or if it came from higher up in the food chain, but at the time if we wanted permethrin, it was an out of pocket expense. I know we had at least one guy that used it some, but I don't know that his results were any better than mine. He often scotch taped ticks to our bosses door just the same as me.

Context- our boss, "chief biologist" at the time did his masters research on ticks, he got us to save every tick that bit us in a piece of scotch tape, why I still have the tick that gave me RMSF. Since we found ticks crawling on us all the time, we began sticking them in scotch tape and sticking them to his door for "fun," we had a lot of "fun," I mean ticks.

The permethrin works fantastic. You can buy it, if you can find it and it is very expensive. Or you can buy a bottle of 10% at Tractor Supply for nothing and a bottle of rubbing alcohol at wally world and mix it yourself. I go for 1% (10:1 mix of the 10%). Whenever I change my "work" pants, I first spray them down inside and out and let them dry. I spray my socks and touch up the pant lets each time I am planning on walking through/working in the woods, and spray my boonie hat with the stuff plus a touch of DEET to keep the skeeters away. I would say that my tick bites have dropped >90% versus using DEET. I live in the woods. I have gotten ticks walking from the house to the car parked in the driveway. I think they are airborne, coming down from the trees. "There's one now! We're over the DZ! Stand up. Hook up. Shuffle to the door. GO GO GO!"

Hess, what is the rubbing alcohol for? I've always just soaked my clothes in 1 part Permethrin to ~5 parts water, followed by a wash without soap (after they've been hang-dried). Saw a tick climbing up my pant leg and left it there. It fell off dead after a while.

Well, the commercial stuff uses alcohol. I use it because it evaporates much faster than water does, so whatever I spray is not out of service as long.

I used to use Adams Flea Spray (for pets). It was great. Never had a tick on me when I used it. Then one year I was using it and constantly getting ticks. It was like "WTF? Are they immune to the stuff now?" Finally, I looked real close at the label and compared it to the label of an old bottle I had laying around. The old bottle had permethrin in it. The new bottle did not and had some other stuff. Last time I bought any Adams.