Lyme Disease

[xinetate]

I just read another member's blog post about his recent experience with Lyme disease and was moved to share my own. I'm about to finish up my second round of antibiotics and will check in with the doctor later this week. I took the first round and thought I was OK; it took too long to realize that I wasn't OK and that the tick bite was the cause of my symptoms.

YES, LYME DISEASE IS GETTING MUCH MORE PREVALENT. It's not just that we're all online and getting hysterical. Climate change is making the blood-thirsty little suckers who carry Lyme thicker than ever, and not only in the Northeast but in the Great Lakes, the Dakotas (especially North Dakota), Central/Northern Coastal California, and even in the Rocky Mountain states and the Pacific Northwest.

CHECK, CHECK, AND RECHECK. Deer ticks are really tiny and may be very hard to find until they're engorged. Use a flashlight and a mirror. Don't forget your scalp and all the other places where hair grows. 

SYMPTOMS VARY BUT THEY ALL SUCK. Even though I have very sensitive skin and get rashes from nothing at all, I did not have a rash from the tick bite--and that's not really unusual. I had cognitive symptoms--headache (very common for me so I didn't identify it as a symptom right away), confusion, lack of focus, despair--and fatigue. But I also had more than the usual amount of trouble sleeping (also a symptom) so I thought that that was causing the fogginess and fatigue. When symptoms include the inability to think clearly, it's hard to think clearly about what might be causing your symptoms.

THIS IS NOT SOMETHING TO IGNORE. Lyme disease can cause permanent damage. I know two people who have experienced just that--one has extensive, life-threatening allergies and the other has permanent cognitive damage--and I don't know that many people. This is not once and done; you can get Lyme disease multiple times.  

PLEASE BE CAREFUL OUT THERE!

 

[VanForNow]

Yes, be vigilant for Lyme Disease. Luckily I had the classic symptoms, such as the red "bullseye" rash. And they are finding more tick-borne diseases. IIRC, they have even discovered one that is 100% antibiotic-resistant.

 

[Dingfelder]

I had cognitive symptoms--headache (very common for me so I didn't identify it as a symptom right away), confusion, lack of focus, despair--and fatigue. 

I usually have twenty good minutes after a meal or a poop, but otherwise, this describes most of my life.  Maybe I was bitten early?

We just found out one of our dogs has antibodies to Lyme.  This means it's probably endemic here, as we have deer everywhere, and ticks are a daily threat.  

I've often wondered if I should get myself checked.  I've felt extremely exhausted for years, but it's hard to separate that from working a night job that I just never seemed to adapt to.  And I've always been a poor sleeper.

What has this whole ordeal cost you?  Unfortunately, in America this still matters much more than it should.

 

[xinetate]

I'm lucky to have decent health insurance at the moment, so the cost hasn't been prohibitive, but I expect a very expensive test in my near future--and IV antibiotics if the results aren't good. Since the CDC recommendations are pretty wimpy, my insurance company is likely to balk. 

My friend with the allergies has spent thousands upon thousands of dollars even with "good" insurance. Ironically, she has had to work much harder despite her illness and disabilities because she couldn't afford to live otherwise. She was widowed very young with a toddler and an infant so she has just had to push through it. 

If you can get yourself to someone who has experience with chronic Lyme and other poorly understood diseases like Epstein-Barr (and its nefarious friends) please go. 

And yes, healthcare--like housing--is a human right and should not be subject to the predations of corporate greed. Yet, here we sit in the richest country in the world wondering how we will afford a doctor's visit and a roof over our heads.

 

[frater secessus]

What has this whole ordeal cost you?  Unfortunately, in America this still matters much more than it should.

I am a veteran and have access to the V.A.   My total was $59;  $50 for the emergency room visit and $9 for the prescription. 

A few weeks on I feel normal except for arthritis-like pain in the knee closest to the bite.

 

[IGBT]

I think it is nigh impossible to prevent Lyme disease if it is so prevalent.  I don't understand why 80% of the population does not have it considering the amount of ticks out there.

On our mountain property, even when we do not go hiking, just stay on the dirt road or our barn building site with few weeds, we end up with a deer tick crawling on our shirt or hair nearly every day!  What about the ones we miss?

How do kids in our area not have 50 ticks on them every day considering how kids play in the woods and grass?

I dunno.

 

[Unitic]

As my thumbnail image indicates, Lyme disease is a part of my life. I became ill with it seven years ago after being bitten by 20+ Deer tick nymphs on a backpacking trip in Mammoth Cave National Park in Kentucky. I developed chronic Lyme along with a Bartonella infection after being repeatedly misdiagnosed for the next five months. At the time I was ignorant to how inaccurate the current blood tests are and continue to be.

Your best defense against Lyme is a healthy immune system...most people who are exposed do not become actively ill with the disease. A suppressed immune system (in my case due to long-term toxic indoor mold exposure and mercury toxicity, along with a cycling accident that resulted in major surgery) means the infection is more likely to overcome the weakened defenses. I struggle with the damage and ongoing co-infections (a Lyme infection further weakens the immune system and leaves one open to secondary infections, reactivated viruses like Epstein-Barr and other challenges) to this day.

I think this is my 10th post, so I believe I can now share links. I have been active as an advocate and educator for the past five years, and will post a link to some short educational videos I worked on in collaboration with the Appalachian Trail Conservancy and a company called Insect Shield which makes very effective tick-protective clothing. Happy to offer further info if I can be of service.

 

[QinReno]

When I lived in the Front Range of Colorado, we would very frequently come home with a tick after hiking below tree line. The deer in the region tend to be infested with those things. They (whoever they are) say that ticks tend to roam around on your body and clothes for a few hours before biting, so we would always take a nice hot shower first thing on coming home after a hike.

Lyme disease is more prevalent in the eastern US, but still occurs in the west, so it seems.
https://hanfordsentinel.com/feature...cle_c73b5cb2-7e77-5e38-bad5-e14b4ea3c524.html

 

[xinetate]

When I lived in the Front Range of Colorado, we would very frequently come home with a tick after hiking below tree line. The deer in the region tend to be infested with those things. They (whoever they are) say that ticks tend to roam around on your body and clothes for a few hours before biting, so we would always take a nice hot shower first thing on coming home after a hike.

Lyme disease is more prevalent in the eastern US, but still occurs in the west, so it seems.
https://hanfordsentinel.com/feature...cle_c73b5cb2-7e77-5e38-bad5-e14b4ea3c524.html

The tick I found was in my scalp. It had survived at least one or two hot showers, shampoo, conditioner, combing, brushing, blowdrying, and curling with hot rollers. I absent-mindedly play with my hair when I'm working (which I was doing for 12-14 hours a day), and the damn thing was in a spot I touch every time I do that. They tiny, until they're engorged and they're just small. Ya gotta look for 'em.

I'm from Colorado and blamed this mess on the swampy East Coast where I now live, but the Lyme map is not pretty: http://www.hwofc.com/Lyme-Disease.html. Coastal California is red and Mississippi is clear. WTF?

As for kids, I worked in childcare and we spent a lot of time looking for ticks, removing them if they weren't embedded (that's "surgery" dontcha know?), and reminding parents to do the same. We found a lot. And several years later, there are a lot more of them.

 

[Unitic]

Here's a link to the web page with the two short educational videos I mentioned above:
https://www.insectshield.com/Logan-McCulloch.aspx

 

[lenny flank]

Keep in mind that several scientific studies, including those by the CDC and NIH, have found no evidence that "chronic Lyme disease" actually exists, and DNA testing has demonstrated that at least some cases of "chronic Lyme disease" are actually just sequential re-infections by different tick bites.

There is also no medical evidence that any of the "treatments" for "chronic Lyme disease" from "Lyme-literate doctors", which range from massive antibiotic doses to "chelation therapy", actually does anything useful. So if you go to a doctor seeking "treatment" for your "chronic Lyme", the odds are very good that insurance will not cover it, since it is not considered to be an actual disease or a real treatment.

 

[Moxadox]

One very important defensive weapon against ticks is permethrin spray. Rather than applying it to the skin, you apply it to your clothing, hats, anything you wear. Socks, especially, and cloth sneakers. It repels ticks and mosquitoes, and it lasts through numerous washings. One can of permethrin spray will last a long time--a couple of seasons, in my case. With bloodsucking critters on the rise, permethrin is an important piece in our armamentarium.

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[Dingfelder]

Keep in mind that several scientific studies, including those by the CDC and NIH, have found no evidence that "chronic Lyme disease" actually exists, and DNA testing has demonstrated that at least some cases of "chronic Lyme disease" are actually just sequential re-infections by different tick bites.

There is also no medical evidence that any of the "treatments" for "chronic Lyme disease" from "Lyme-literate doctors", which range from massive antibiotic doses to "chelation therapy", actually does anything useful. So if you go to a doctor seeking "treatment" for your "chronic Lyme", the odds are very good that insurance will not cover it, since it is not considered to be an actual disease or a real treatment.

Does it make much effective difference whether the Lyme infection is acute but repeated rather than simply chronic?  You're still being exposed to a debilitating agent over long periods of time either way.

I'm just trying to clarify whether or not this is a semantic debate or has any real-world implications.

 

[lenny flank]

The difference is in the "treatments". Lyme is a bit hard to diagnose, but it can be treated easily and effectively once it is. The key part of the "chronic lyme" legend is that it is supposed to be very hard to treat, hence all the silly big long expensive "treatments" that people try. None of those "treatments" works, all of them separate the gullible from their money, many of them are potentially dangerous, and some of them have actually killed people. So yes, there are real-world consequences.

 

[Cammalu]

Unitic are you still in KY, we are in western KY for a few more months.

 

[frater secessus]

I'm just trying to clarify whether or not this is a semantic debate or has any real-world implications.

Here's what the CDC has to say (emphasis added):

Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS). The cause of PTLDS is not known.

The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi (Infect Dis Clin N Am 22:341-60, 2008). Because of the confusion in how the term CLD in this field is employed, experts do not support its use

My understanding:
Lyme disease = real
Serial lyme infections = real
post lyme disease syndrome = maybe real, causation unknown (hence syndrome rather than disease)
chronic lyme disease = misunderstanding or sloppy word choice at best, quackery at worst


Full disclosure:  I appear to be having a PLDS-style lingering symptom (arthritis-like knee pain near site) after successful treatment for Lyme.  I hope the ticks are not making me write this.  /looking around

 

[Theiznezz]

I found 2 ticks on me this week. I got a job building solar fields and we are in northern PA. I saw a coppehead snake on the site too. I been really worried about this lately

 

[BigT]

Though I don't have Lyme Disease myself, I know friends who do, and I'm totally tick paranoid and terrified of getting it.  I've gone so far, as I did on my last road trip through 5 western states, as to carry Isopropyl Alcohol in a spray bottle on my hikes.  If I even think I brushed up against a blade of grass on the trail, I immediately spray the area with the alcohol, getting my socks nicely soaked.  

If I think my hat brushed up against a branch or leaf, I'll spray my scalp, neck and the inside/outside of my hat thoroughly.  

Being a germaphobe, I'm a big fan of Isopropyl Alcohol, using it religiously to wash my hands every time I go to the store and touch random objects.  
I slacked off on this hand-washing practice a few months ago, and promptly got a nasty cold that lasted weeks.  

I'm sure I'm just paranoid (no big surprise there), but it feels good to take this precaution.  So far it seems to be working. 

 

[AMGS3]

I was finally diagnosed with Lyme disease in '08 after almost 10 months of feeling like I'd been run over daily by a train. It's hard to describe the exhaustion and pain accurately. Many clinic visits later I finally talked to a Dr. who did a titer test.

I highly recommend the following book by Stephen Harrod Buhner-
https://www.google.com/search?q=Hea...UB2IMKHeQ4D3UQ9OUBMAN6BAgLEBo&biw=424&bih=678
And these two about Lyme coinfections (same author)-
https://www.google.com/search?q=Nat...UB2IMKHeQ4D3UQ9OUBMAN6BAgLEBg&biw=424&bih=678
https://www.google.com/search?q=Hea...UB2IMKHeQ4D3UQ9OUBMAN6BAgLEBA&biw=424&bih=678

They are very informative.

Peace,
~angie

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[Cammalu]

I’m out in the tick fields daily. I use a deet 60% spray and do ok. If I forget I have ticks. Use the spray!