PSA- Don't get Lyme disease

T

TedS

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Joined
Jul 5, 2022
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15
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Harrisburg
Short story- Recently retired so have been out 50 days this year, lots of it bushwhacking small streams. Have always taken tick precautions- spray, long sleeves and pants tucked in, large hat, checking after, etc. Woke up Saturday night with chills, in the morning muscle aches and wicked total body fatigue. No rash anywhere or any clear bites, never saw any ticks that i noticed. Clear head, no respiratory symptoms. Both myself and wife are health care so we both instantly thought of Lyme disease considering my exposure risk. Started Doxycycline that am. Today pretty much 85% symptom free and will finish out the course.

Little more- I am healthy, no med problems and am in the gym 1.5-2 hrs a day, 6 days a week. This kicked the crap out of me. The unrelenting fatigue was impressive. I can't imagine dealing with this if i had other health problems. Even with precautions, I always assumed it would present itself. I only post this to make people aware. Precautions needed are pretty much well documented on the site already. Take whatever you feel necessary. If I didn't have my background I would have probably thought it was the flu or something. Early treatment is the key. Doxy is cheap, easy and well tolerated. Just everyone be careful, especially if you have health issues.
 
Ugh!! This is one of the main reasons I quit medicine at 59. The recommendations are based on poor evidence. E.g.- did someone start a stopwatch when the tick attached? Most have no idea they have even been bit and lots don't get a rash. The criteria are very limiting. Medicine used to be practiced with a combination of data as well as diligent thought process for each patient. Now it's been dumbed down to looking at a computer with no regard to the actual patient. If anyone goes to their doc and tells them a story of bushwhacking for many hours through PA woods (a huge endemic area) and the symptoms described and is not immediately prescribed antibiotics, I would find a new doc. I'm embarrassed by what medicine has become. Sorry, end of rant.
 
My course was very similar to yours, twice. First time I didn’t know that you’re supposed to feel worse for about the first 36 hours on the doxy…Was starting to get pretty concerned and woke up morning 2 after the doxy and felt 100% better. By noon I was feeling good enough that I actually went fishing that afternoon. Second time I knew what to expect and got lucky that I caught it showing up heading into a weekend. But same thing, ruined the weekend, but felt good by Monday.

Ugh is right though. Animal I most fear in the woods, and you can’t even see them.

The unique symptom for me was a headache at the back of my head. Only times in my life I’ve had that happen. Second time I never found a tick, but knew immediately with that headache, and the faint start of a rash.
 
I had Lyme in my spinal column and brain, verified by MRIs and a neurlogist who finally recognizsed the problems that tests kept missing. I spent 30 days on an IV treatment of cefotaxime administered througha PICC line.

I ended up with nine months or so of full facial paralyss, I still have permament damage, I haven't slept more than 3 hours at a time, and I am 100% convinced I am stupider now than when i started. That has been verified via cognitive testing although no one can admit whether that's the problem or i have early onset dementia, so that's cool.

On the upside, they found a tumour in my kidney as a side benefit of the MRIs, I get to die of debilitating mental decline and not cancer. So... there's that win!

Anyways, shower within 2 hours of getting out of the forest and you reduce your chances by over 60%. Probably shouldn't have taken a nap that day!
 
If you spend a lot of time outside and you start feeling like festering garbage, you might have it. If your doctor is reluctant to diagnose, find a new doctor.

I was blessed that my doctor was absolutely committed to figuring out what was wrong with me 30 years ago, and it was Lyme. I thought it was spinal meningitis because of the absolutely debilitating headache and 104 fever. I actually had a spinal tap done.

My doctor, however, figured it out and got me on a month of doxycycline.

Saved my life and sanity.

That tick bite is no joke.
 
My wife was complaining of intermittent swelling of her knees. Her physician ordered x-rays which were normal. After continued intermittent swelling, I had her schedule with a rheumatologist. She had fluid analysis that revealed Lyme. Doxy was the initial choice of treatment with no relief. IV treatment was the next option. I administered the antibiotics for 30 days. It was a year before her knee swelling subsided. She recently found another tick which placed her in a panic. The PA ordered a Serological Lyme test and Doxy. I explained to her the test would not be accurate because she most likely have antibody present from the initial infection. ( I am a medical laboratory scientist and understand immunological testing.) Her test results were positive for IgG antibody and negative for IgM which indicates a recent infection is unlikely. She did see her rheumatologist who drained and tested fluid. Those results were negative as well. It was a two year road to recovery. Fortunately, when Lyme is successfully treated with antibiotics, it is eliminated. However, reinfection can occur if you are exposed to the Borrelia bergdorferi bacteria.
 
Permethrin treated clothing, particularly long socks, are cheap insurance. Ticks are slow and generally won’t make it up long socks.

“People wearing permethrin-treated sneakers and socks were 73.6 times less likely to be bitten by a tick than those wearing untreated footwear.”

Lyme Tick & Disease Repellent | Best Defense Against Ticks

Learn about the most effective repellents to prevent Lyme disease and other coinfections. Learn the difference between repellents and how to choose the right repellent.
www.globallymealliance.org www.globallymealliance.org
“Sustained contact with permethrin-treated clothing—up to 5 minutes—resulted in loss of normal movement for all examined tick species and life stages, leaving them unable to bite.”
entomologytoday.org

New CDC Tick Study Adds to Promise of Permethrin-Treated Clothing

Experiments conducted at the U.S. Centers for Disease Control and Prevention showed clothing treated with permethrin had strong toxic effects on three primary germ-carrying tick species, interfering with the ticks' ability to move properly and likely interfering with their ability to bite.
entomologytoday.org entomologytoday.org
Wearing them under waders is advisable in case a nasty little bugger gets in. FWIW I bought and use these: 3 pair for $15. (I have no affiliation with the seller). https://www.ebay.com/itm/116746010048
 
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I bought concentrate of permethrin on Amazon and dilute it and apply it to my outdoors clothing etc yearly. Proper dilution and application and it works great. Also picaradin on skin beats deet if you have exposed skin.
 
I use permethrin on all my pants I wear in the woods. My hunting clothes are soaked with permethring prior to the season. It helps alot.

Our guidance at work is if you get a tick in you and theres any chance you got it at work, go to dr and document it in the event of any long term issues for workers comp. The workmans comp office dr both times I have went (different dr) denied prophylactic doses of doxy because the tick had been attached less than 48hours.

My primary care doc is hard to schedule on short notice, the closest urgent care offices seem to be hit or miss if they will prescribe prophylactic doses without symptom or blood test
 
Couple of final thoughts from me. First- very sorry to those among us who have had severe cases. Wish it wasn't the case. I encourage everyone to be careful with the sensational quotes taken from some of the studies referenced. I read, published, reviewed for IRBs, and peer reviewed medical journal publications for 30 years. Many times these studies do not actually hold up to scrutiny. You need to read them carefully and find out what the study is telling you and not telling you in the headline. My read of the data is that permethrin is likely of some benefit, certainly better than no treatment. In highly controlled lab studies, that have little relationship the real world use, the data is encouraging. What I mean by that is, we can reduce the risk of infection to a varying degree but in no way can we eliminate it. The more diligent one is, using all available means, the better the chances of a good outcome. Ignoring the danger is probably a bad strategy. Also I think it is important to remember and remind that it's not just us psychos out chasing 5 inch fish for 8 hours that are at risk. The aunt that gardens, the kids that play in the parks, dragging kayaks through the brush to the stream etc. Many outdoor activities can involve exposure. But keep doing them.
My humble advice would be to research the disease a bit, plan a personal strategy, have a plan if infection should happen and, last but probably not least, share your knowledge with reminders to those around you. Simple awareness is important and stuff is easy to forget about. Perhaps Aunt Jinny hasn't even heard about Lyme disease. Thanks all for reading and go get some.

PS-as a reminder. Keep DEET away from bamboo. It will destroy the varnish.
 
I use a natural repellent and keep it in the truck , does nothing for stinging caterpillars ! But works well on other bugs .
IMG_6936.jpeg
 
One of my boys got it a couple years ago. Temporary facial paralysis to the point he couldn't close one eye. After treatment, he has no sign of the illness. He won't go into the brush at temps above freezing without applying "enough permethrin or DEET to kill a horse" on his clothing (yes, a fly line or two has been destroyed from overspray). I had a tick attached to the nethers that I quickly removed several years ago, and was given meds when I described the situation to the doc.
If any doctor requires you to check all the boxes for proof of a tick bite, ask him or her about "the agreement" with other docs to have doxycycline prescribed to them every summer for no particular reason. I won't tell you how I know this, but it happens.
 
similar story. About 25 years ago I had what was close to a bullseye appearance, although it was distorted/atypical because it was on the back of my knee. It mostly faded by the time I went to the doctor. I mostly likely picked it up in a tree line behind my house. Went to my GP. Presented the possibility of Lyme or another tick borne illness. He was skeptical that it is Lyme, because at the time it was North of Rt80- a barrier to migration. This was true early on and to some degree. But it was only a matter of time because we know how animals will cross highways. At that point- I had a ah-ha moment and said I visited my family in Northern NJ. Got the dox. The only time I lied to a health care worker. I could obtain it through biochemical supply houses, but I'd rather not since manufacturing standards for research use might not be equivalent.
His response is alluded to in TedS posts. What he learned or read is correct at the time, but can be outdated and there is a lag between research and practitioner; thus, an open mind is needed. He also has to balance patients who KNOW what they need-LOL- and quell antibiotic resistance.
 
One more thing. I have found ticks on me after trips, but few attached because of precautions and a thorough check/shower after a trip. But, 90% of the time I found an attached tick on my body I almost certainly was exposed from the number one vector- man's best friend- picking it up from furniture in the house. I cut that down by examining the dog and brushing with a fine toothed comb before they get in the car.
 
I've had no problem getting doxycycline from a local med express
The doctors I've seen there seem to freely write a script at any sign of a tick bite or bullseye.

My PCP - not so much
 
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