Yeehaw! May is Lyme Disease Awareness Month and while this could and easily should be an endless string of words, I’ll make it just a little brief with some basic notes that can potentially save someone a whole lot of pain and grief.
First though, I’m honored to be featured on Lymedisease.org’s blog this month for Lyme Disease Awareness Month. Please read my write-up that matches the above awareness photo: link.
The medical politics of tick-borne diseases have seriously affected the health of millions of people because of a lack of education in the healthcare field about these infections. Physicians have a disturbing lack of understanding of these illnesses and either no idea of how to treat them properly, or a fear that they will be reprimanded because the proper way to treat does not meet CDC guidelines. Those of us with Chronic Lyme have taken this hit hard.
There is so much dis + misinformation out there, most often coming from institutions like the CDC and big, fancy names like Mayo Clinic, John Hopkins, etc – places that patients should be able to trust, which makes it a lot more dangerous and alarming. Things need to change, soon, because Lyme, the most common vector-borne disease, just continues to make it’s presence known, yet hardly anything is being done. The baby steps are there, but they are barely baby steppin.’ Sure, there is more media coverage during May but then what…the issue just melts and folds right back into the victims of this disease again, and we are left to bear the burden as usual.
So…some important tick info for you! If you have a tick on you, the first thing you should know is that attachment time doesn’t matter. You can say “oh it was only on me for a day!” but that is not going to change the fact that disease lives in the tick’s saliva, and once it bites you, if it’s carrying disease, it can transfer it to you the moment it bites. Yes, the longer it is attached, the more dangerous, but the fact is, they don’t always stay attached, most people usually don’t know they have even been bitten and, back to the point: attachment time is irrelevant.
Proper tick removal is key!
* Do not use things like vaseline or oils
* Do not squeeze or twist it
* Don’t burn it
* Use fine point tweezer and make sure you get the entire tick out, including the head.
Ideally, the culprit won’t be totally mangled. Save it and send it in for testing and you’ll be able to see what gross stuff (diseases) it may or may not be carrying. However, remember that testing isn’t 100% and if you do have symptoms after a bite, you need to find a Lyme doctor and go from there.
Here are some recommended places to send a tick to get it tested:
* Ticknology (this is what most people use)
* TickCheck
How to find a Lyme literate medical doctor:
* ILADS
* Find a Specialist
Those are the best references, but also it’s a good idea to join your local Lyme Facebook group if there is one, and get insight there. I have to travel almost 500 miles to my LLND, so you might need to take a roadtrip…I also really recommend NOT only doing virtual appointments until you meet your doctor a few times in person. Connecting and trusting your physician is crucial, and I believe this needs be done in person to get the most optimal care.
Nymphal ticks, the itty bitty poppy seed sized ones, can actually be more dangerous than adult ticks, since people usually just brush them off, don’t see them, or don’t realize they’ve been bitten. Just because of their minute size doesn’t mean they can’t give you big time Lyme. Statistics in the West show they actually cause more Lyme disease than adult deer/black-legged ticks.
In regards to testing yourself for Lyme, you can do this through your PCP, but it’s pretty much pointless. The test you’ll get (Elisa, Western Blot) has huge inaccuracy rates so even when you get that negative result, don’t walk away satisfied like I did years ago. I didn’t know then what I know now. Wow and gee, oh I wish I did. Please use Igenex or Vibrant labs, despite the cost. Diagnosing should also be based on symptoms, another reason for the thumbs up on a Lyme doctor. Here is a link explaining testing issues.
Another really important thing to consider is that ticks are almost always carrying diseases other than Lyme. There is a LONG list of co-infections here that I won’t even go into, but they can be absolutely brutal and horribly difficult to treat if not addressed immediately, often just as bad as Chronic Lyme, and they require completely different methods of treatment. This is why it’s really critical to find a Lyme doc or naturopath. This is where you take the fork in the road from your general practitioner if you want to heal.
If you are just diagnosed with Lyme, and you are still with a regular physician, you can outrun Chronic Lyme if you treat properly, but that means a minimum of 2 months of antibiotics (doxycycline, minocycline, azithromycin, amoxicillin are options) and it would be good to throw in things like Cryptolepis, knot weed, catsclaw, Chinese skullcap, artemisia, maybe black walnut also, and of course some solid probiotics. Don’t spazz about the use of antibiotics for that long, it’s way less of a horror movie than a life of Chronic Lyme, I can promise you that. Hardly anyone (~10% of people) gets a bullseye rash, don’t listen to any nonsense that tells you otherwise …and those who do end up with a rash, it can show up in such a wide variety of ways, check out below.
Also extremely relevant, symptoms can show up days, weeks, months, even years after a bite. Lyme can lie dormant for a very long time, and be activated or reactivated by a stress/trauma event or another illness or disease. This is wildly common. Symptoms don’t have to fit in a neat box of “flu-like symptoms.” For example, my first one was debilitating, crushing upper back pain that made me wish the world would end. This is again why accurate testing is so critical and finding a doctor who specializes in tick-borne diseases is paramount. Even if you don’t remember a bite, almost everyone is exposed to tick habitat at some point in their life, and Lyme is all around us (except for Antarctica, you get a pass), so there is a very high probability that someone’s mystery illnesses and bizarre symptoms could be Lyme disease. Trust me, you want that figured out sooner than later.
A far as prevention goes, there are a lot of things that can help, but man are those ticks super hardy and relentless, so be alert and proactive:
* Permethrin to treat boots and clothes is good, but KEEP CATS AWAY FROM IT
* You can buy already treated clothes or buy the spray
* 20% picaridin spray is also good for a skin repellant
* Lemon/eucalyptus oil is helpful for a natural repellant though honestly not as strong
* Drying your clothes on high heat for 10-15 minutes is a pretty good way to annihilate ticks, highly recommend
* Light colored clothes and tucking shirts and socks in, use gaiters and a hat
* Of course, do self checks and if you have someone to help you check, do that too
* Maybe don’t manically roll around in leaves or grass, probably a good idea
Great stuff from this artist above.
Don’t forget to ADVOCATE FOR YOURSELF !
WOW Jill !!! This is so informative. Good for you to step in to educate so many on this horrible disease. Keep up the good work You are always in my prayers, Sheila Morehead