General Discussion
Lyme Disease
12/2/13 @ 8:37 PM
Given that most of us are avid outdoorsmen, I thought this was worth passing on. The overwhelming majority of folks with Lyme disease have no idea what they have, and many times end up with a false diagnosis of Fibromyalgia, or no diagnosis at all. Now that I finally have a diagnosis of advanced Lyme disease (about 4 months now), I’ve ran across two people with similar symptoms, who as it turns out, also have Lyme disease. Lyme disease is showing up in more and more people every year. The Milwaukee Journal recently ran a story about this on the front page.
Lyme disease is misunderstood by most physicians, and the standard test for Lyme disease is only accurate around 60% of the time. Here is how it started for me….
About 4 years ago I began to have aches and pains in weird places – shooting pains in the back of my head, shin, and forearm. This went on for a year or so. Nobody could figure out what it was, so I just dealt with it. My primary care physician gave me an Elisa Lyme test. It showed no Lyme infection, so he told me to take Advil when it got too bad.
Over the next year my ears began to ring, and my joints (hips, elbows, knees) began to hurt. I went to a Neurologist, and a Rheumatoid doctor, they also gave me an Elisa Lyme test, which again turned out negative. By this time, I was beginning to realize that something was seriously wrong with me, only nobody could find it. I was tired with limited energy most days. I had MRI’s and Cscans, arthritis tests, MS tests, and a dozen others that I can't recall – no one could find a darn thing wrong with me.
Slowly but surely, in addition to the symptoms noted above, new symptoms showed up steadily for the next two years. I began to have GI problems coupled with chest pain. I went through all sorts of GI tests from an upper GI endoscopy, to a test for esophagitis, to esophageal spasms. All turned up negative. Then my heart began to beat erratically, and I underwent a nuclear stress test. Again, nobody could find a darn thing wrong with me.
Then this past Summer, things got so bad that I would get turned around in the town where I live, and had a hard time remembering how to get to my house, I was easily confused. I felt like I was walking around in a daze. I had a hard time thinking, and it became difficult to get out of bed. The worst symptom I had was a feeling of anxiety in my chest. Not sure how to describe it – I felt like I was going on trial for Capital Murder the next day. It was just plain horrible.
It came to head when I was driving with my wife and kids (in the town that I live in), and I went the wrong way down a one way street. Thank heavens nobody was coming. My wife talked me into going to Mayo - somebody had to be able to figure out what was wrong with me.
I ended up confiding in a coworker that I was going to take a leave of absence, and was going to Mayo to see if they could figure out what was wrong with me. I was beyond desperate at this point. I truly thought I was dying. I hurt absolutely everywhere, my BP was 150 over 110, I was anxious all the time. Thank the lord my co-worker had some experience with Lyme, and pointed me to the right doctor. I was skeptical because I had already tested negative for Lyme 3 times by 3 different doctors.
Even though I was skeptical, I made the appointment. The Lyme doctor gave me a CD57 test, which is an extremely effective test for Lyme disease. The doctor explained that the Lyme test that is typically given by a general MD is extremely inaccurate, and should not be relied upon when a negative diagnosis is given.
At any rate, the CD57 test works like this: A level of less than 20 will put you in a wheelchair, a level of 20 to 60 is an extremely active infection, 60 to 150 represents a Lyme infection, and anything above 200 is considered normal. I had a 42. I can’t even imagine the poor guy who has less than 20.
I’ve been on Doxycycline for 3.5 months now and am slowly recovering. Here is the really crazy part. After I received a Lyme diagnosis I happened to see my cousin camping, who I do not see frequently. Before he sat down to the campfire he started stretching, then began to tell me how bad he hurts. After I listened, I told him to go see a Lyme specialist, his symptoms were spot on with mine. Oddly enough, as it turns out, he had Lyme disease too. Then while working with an outside contractor at work, one of the guys was telling me about his sudden aches and pains. They were not spot on with mine, but pretty close. He also ended up with a diagnosis of Lyme. Both my cousin and the contractor had been tested previously for Lyme and tested negative.
I figure, as many of us on this site who spend a considerable time outdoors, I can’t be the only one, and thought I would share what I know. Lyme manifests itself in so many different ways. I don’t ever recall being bit by a tick, I never had a bullseye rash, I just started to get symptoms.
I can't tell you how awesome it was to finally get a definitive diagnosis.
Displaying 1 to 15 of 355 posts
My wife battled some mysterious sickness for 3 years! Kept going to the doctor and they tried everything. Even sent her to an allergy specialist.
finally said it must be allergies.
But how can allergies make her sick so many months of the year?? Finally someone tested her for lyme disease. She had it. Difficult time getting rid of it. We were also referred to some lyme disease speciialist in Holman wi? Heard he has a 1 year waiting period he has so many patients.
But eventually my wife got something that cured the issue so we did not make the run to Holman.
My father fought it too. Was on some med for many months. It bothered his stomach, made him ill and he looked ready to die.
He was in his 80's at the time. Lost a lot of weight while taking the cure. But pulled thru.
Good luck to all who fight lyme disease. I got tested as always outdoors but my test came back clean.
finally said it must be allergies.
But how can allergies make her sick so many months of the year?? Finally someone tested her for lyme disease. She had it. Difficult time getting rid of it. We were also referred to some lyme disease speciialist in Holman wi? Heard he has a 1 year waiting period he has so many patients.
But eventually my wife got something that cured the issue so we did not make the run to Holman.
My father fought it too. Was on some med for many months. It bothered his stomach, made him ill and he looked ready to die.
He was in his 80's at the time. Lost a lot of weight while taking the cure. But pulled thru.
Good luck to all who fight lyme disease. I got tested as always outdoors but my test came back clean.
Let me add another piece to the tick discussion. Teo weeks ago I was diagnosed with alpha gel syndrome. Was told by allergy doc I was bitten by the lone star tick. My main symptom was itching in various spots on my body. But there can be other symptoms too. No cure for it. The main thing to avoid symptoms is to completely illuminate red meat from your diet and no dairy products. Never heard of this but upon goggling there is lots of info out there. The tick is identified by a white dot on it’s back. No idea when I was bitten by this tick but a very simple blood test can identify it.
Currently more aware, looking for ticks, spraying my yard, talking to people to be on lookout and you do not want to be bitten again.
Currently more aware, looking for ticks, spraying my yard, talking to people to be on lookout and you do not want to be bitten again.
This is an interesting study...
50% of Wisconsin Deer Ticks Tested Positive For Lyme Disease
Combine the above with the other 19 tick borne illnesses (some they didn't test for), and if you get bit by a deer tick, it's more likely than it isn't that you're going to get a tick borne illness.
50% of Wisconsin Deer Ticks Tested Positive For Lyme Disease
Combine the above with the other 19 tick borne illnesses (some they didn't test for), and if you get bit by a deer tick, it's more likely than it isn't that you're going to get a tick borne illness.
Agreed Brent - as far as tick spray / clothing , been there - done that & it is a preventative but no guarantees and adding a pet ( lab retriever ) to the equation it’s still possible for ticks attached to the skin at the end of the day . In the fall being outdoors as much as possible & cleaning game animals occasionally adds to the possibilities. Clothing & spray choices are many & sometimes costly but at the end of the day it may help some but no guarantees & as Brent said not on my skin - or my immediate environment.
Wanted to say something about my misdiagnosis which is similar to your current situation Brent - if that’s possible with a misdiagnosis - When I went to the rheumatologist & was initially diagnosed with Lymes , at that point it was beyond treating Lymes directly & the doctor was trying to treat whatever the Lymes had effected in my body from organ problems such as you or my musculoskeletal system . In the end I had every symptom possible & I was misdiagnosed for having Polymyositis caused by Lymes . Like you didnt have any ticks on me in years but that’s was docs diagnosis , believing Lymes could cause that .
So with that again it seems like tick removal or treatment asap for prevention if possible is best option , because once Lymes is in the system it can effect different parts of the body & is difficult or impossible to treat . But it can be tough as in your case no tick & what I was being mistreated for there was no tick - Lymes & the various types of ticks & diseases they carry isn’t an easy fix
Wanted to say something about my misdiagnosis which is similar to your current situation Brent - if that’s possible with a misdiagnosis - When I went to the rheumatologist & was initially diagnosed with Lymes , at that point it was beyond treating Lymes directly & the doctor was trying to treat whatever the Lymes had effected in my body from organ problems such as you or my musculoskeletal system . In the end I had every symptom possible & I was misdiagnosed for having Polymyositis caused by Lymes . Like you didnt have any ticks on me in years but that’s was docs diagnosis , believing Lymes could cause that .
So with that again it seems like tick removal or treatment asap for prevention if possible is best option , because once Lymes is in the system it can effect different parts of the body & is difficult or impossible to treat . But it can be tough as in your case no tick & what I was being mistreated for there was no tick - Lymes & the various types of ticks & diseases they carry isn’t an easy fix
SH,
I very much agree with some being more susceptible than others.
Some folks can die from eating a peanut or being stung by a bee, while others have no trouble....
I recall when COVID was a big thing. My wife had it and we of course share a bed, and I never got it.
2 months later I did tho. It's funny how you can be in close proximity to someone who is sick and be fine, but then touch a door knob and get sick, it's really something how our immune system works.
Some folks get Anaplasmosis and their body rights the ship itself, and for some it's as bad as it gets.
At any rate, we can all agree to be vigilant and doing a thorough tick search when you get home from being in the woods.
Also, ticks can live through a cycle in the wash machine or in the hamper for a week. When you get home, unless your cloths is muddy, put your cloths straight in the dryer. The hot, dry heat kills in 15 minutes or so.
I very much agree with some being more susceptible than others.
Some folks can die from eating a peanut or being stung by a bee, while others have no trouble....
I recall when COVID was a big thing. My wife had it and we of course share a bed, and I never got it.
2 months later I did tho. It's funny how you can be in close proximity to someone who is sick and be fine, but then touch a door knob and get sick, it's really something how our immune system works.
Some folks get Anaplasmosis and their body rights the ship itself, and for some it's as bad as it gets.
At any rate, we can all agree to be vigilant and doing a thorough tick search when you get home from being in the woods.
Also, ticks can live through a cycle in the wash machine or in the hamper for a week. When you get home, unless your cloths is muddy, put your cloths straight in the dryer. The hot, dry heat kills in 15 minutes or so.
L90,
The clothing absolutely works, prevention is the best way to fight ticks, as after you get bit it's tough sledding.
The only tip I would offer is if possible wear long underwear under your pants, a tee-shirt under your flannel etc, as it's best not to have treated clothing directly on your skin.
My Lyme doctor always tells me not to put anything on your skin that you wouldn't put on your sandwich!
That's said, if I had to pick one, I'd put it directly on my skin if it meant keeping the ticks away.
I've lost my interest in deer hunting as between the ticks and the deer themselves having ticks on them, hunting has lost its luster. I do still duck hunt and fish like a mad man!
Interesting story, I eventually landed with an internal medicine doctor as my PCP (also have a separate LLD.)
When I gave my lab work to my internal medicine Doc, she was looking at it with a furrowed brow, and had kinda a blank stare. I asked her "what's wrong, do you not agree with what your looking at", and she said "not at all Brent, I have no idea what I'm looking at, or what Anaplasmosis is" She had to look it up.
For me, that was telling as my internal medicine doctor is very good, she jus happens to be western schooled, and they're not taught about tick borne infections, so they're literally blind to it. They've only been taught about Lyme proper, if your Elisha Test comes back clean, they move onto the next thing....
The clothing absolutely works, prevention is the best way to fight ticks, as after you get bit it's tough sledding.
The only tip I would offer is if possible wear long underwear under your pants, a tee-shirt under your flannel etc, as it's best not to have treated clothing directly on your skin.
My Lyme doctor always tells me not to put anything on your skin that you wouldn't put on your sandwich!
That's said, if I had to pick one, I'd put it directly on my skin if it meant keeping the ticks away.
I've lost my interest in deer hunting as between the ticks and the deer themselves having ticks on them, hunting has lost its luster. I do still duck hunt and fish like a mad man!
Interesting story, I eventually landed with an internal medicine doctor as my PCP (also have a separate LLD.)
When I gave my lab work to my internal medicine Doc, she was looking at it with a furrowed brow, and had kinda a blank stare. I asked her "what's wrong, do you not agree with what your looking at", and she said "not at all Brent, I have no idea what I'm looking at, or what Anaplasmosis is" She had to look it up.
For me, that was telling as my internal medicine doctor is very good, she jus happens to be western schooled, and they're not taught about tick borne infections, so they're literally blind to it. They've only been taught about Lyme proper, if your Elisha Test comes back clean, they move onto the next thing....
First of all thank you everyone for excellent info from some very informed people, particularly Brett. Being informed and aware, take the precautions you can with clothing, inspections, etc. seems the best defense. I do like Steelhead's perspective. The topic is rather shocking and fear invoking but I'm not going to quit enjoying the outdoors as I always have, take the appropriate precautions and you should be safe. I have laundered with permethrin a couple times. What are opinions on it's effectiveness?
Cant argue with that & you do have more knowledge on the tick diseases firsthand as you have one . I do agree more work needs to be done on diagnosing & the medical portion of the various diseases . So many variables go into the amount of positive cases - either way I don’t think ticks will be gone anytime soon & as previous post said - ticks suck , for many reasons .
I looked at bee stings - although bees don’t carry as many diseases I do believe like ticks some people are more susceptible to stings / bites & illness .
Will keep learning about the various tick borne diseases 🦌
I looked at bee stings - although bees don’t carry as many diseases I do believe like ticks some people are more susceptible to stings / bites & illness .
Will keep learning about the various tick borne diseases 🦌
SH,
I enjoy your posts as well Brutha, so keep them coming please :)
You and I are perfectly aligned when it comes to Lyme proper. I agree with the length of time a tick must be attached, the frequency, etc
However I feel differently with the other 18 tick borne illnesses.
40 percent of ticks carry at least one of the other infections referenced in earlier posts..
Also interesting is that both fleas and ticks carry Bartonella, so your bite doesn't necessarily have to come from a tick as it relates to Bartonella.
Consider that your average tick can have 1 - 3 of 19 different diseases, yet western medicine tests for one of them.
The likelihood of being diagnosed with something outside of Lyme proper is quite rare, unless you step away from western medicine and look at LLD's (Lyme literate doctors). It's a whole profession like a cardiologist or nephrologist.
Obviously since western medicine doesn't test for any of them, they're not going to find any infection.
The CDC isn't going to admit fault, or that so many undiagnosed cases exist. If you think about, the majority of cases go undiagnosed because western medicine can't find something they're not looking for, Mayo included as sad as that is.
I have a passion for Lyme advocacy, because it has impacted my life so profoundly.
I never had a tick bite that I can recall, I did t have a bullseye rash, I didn't even pull a tick off of me, yet somehow I had 3 different tick borne illnesses, that western medicine never (to this day) diagnosed.
I had to get a blood panel from IGenex to get a diagnosis.
Even after being diagnosed, some of my western doctors would not accept it, is it didn't come from a mainstream lab.
I would argue that since 40% of ticks carry some disease, and some that can infect you inside of 15 minutes, it's not as rare as western medicine pretends - they're absolutely blind to it.
I enjoy your posts as well Brutha, so keep them coming please :)
You and I are perfectly aligned when it comes to Lyme proper. I agree with the length of time a tick must be attached, the frequency, etc
However I feel differently with the other 18 tick borne illnesses.
40 percent of ticks carry at least one of the other infections referenced in earlier posts..
Also interesting is that both fleas and ticks carry Bartonella, so your bite doesn't necessarily have to come from a tick as it relates to Bartonella.
Consider that your average tick can have 1 - 3 of 19 different diseases, yet western medicine tests for one of them.
The likelihood of being diagnosed with something outside of Lyme proper is quite rare, unless you step away from western medicine and look at LLD's (Lyme literate doctors). It's a whole profession like a cardiologist or nephrologist.
Obviously since western medicine doesn't test for any of them, they're not going to find any infection.
The CDC isn't going to admit fault, or that so many undiagnosed cases exist. If you think about, the majority of cases go undiagnosed because western medicine can't find something they're not looking for, Mayo included as sad as that is.
I have a passion for Lyme advocacy, because it has impacted my life so profoundly.
I never had a tick bite that I can recall, I did t have a bullseye rash, I didn't even pull a tick off of me, yet somehow I had 3 different tick borne illnesses, that western medicine never (to this day) diagnosed.
I had to get a blood panel from IGenex to get a diagnosis.
Even after being diagnosed, some of my western doctors would not accept it, is it didn't come from a mainstream lab.
I would argue that since 40% of ticks carry some disease, and some that can infect you inside of 15 minutes, it's not as rare as western medicine pretends - they're absolutely blind to it.
Brent - nice post & no arguments with the different diseases . Early detection & early treatment are generally the best option for most if not all of the tick borne sickness / diseases but not 100 % like anything . The reasons are many why the boom in cases , but when you have 100’s of millions of people with 100’s of millions of tick carrying pets of course cases will increase . With that number of people the individual reasons for getting Lymes are many including unaware / uneducated . With that 459000 I would question how many would be long term . Again with the number of people infected divided by the amount of possible people that are exposed to ticks is small . Always enjoy your posts & Best wishes in recovery
SH,
Thank you for your post. What you cited in regards to timing on Lyme disease proper is absolutely correct.
However there are 18 other tick borne illnesses, and each one comes with its own set of rules. Mayo and every other western medicine practice does not test for them, treat them, or to be honest, even know much about them. In short they have absolutely zero expertise on co-infections
As an example, undiagnosed Powassan Virus has a mortality rate of about 15%, and you can get it in less than 15 minutes. As you would guess, almost all the cases are undiagnosed because they don't test for it! Wisconsin is also the national leader for this virus, so we're leading the pack!
For me I had Anaplasmosis, and late stage Anaplasmosis symptoms is organ failure. My nephrologist told me I would be on dialysis in 5 to 10 years - I was in stage three kidney failure. Fast-forward present day and my kidney function is normal again. Also worth noting is that you can get Anaplasmosis in as little as 10 to 12 hours. There are many people with kidney and liver disorders that have Anaplasmosis, but they never know, because exceedingly few western doctors know anything about it, and even if they did, they don't have a test to order to confirm it....
Rocky Mountain spotted fever is probably the nastiest one, and has a mortality rate of about 20%, and as high as 5% for folks that have a formal diagnosis.
Of course there are many symptoms that overlap, but some symptoms are very specific to one of the 19 or so: infections that ticks carry.
You can also get Lyme carditis which can be a deadly heart condition.
Lastly, there is an estimated 459,000 undiagnosed cases of Lyme Disease and associated co-infections.
Thank you for your post. What you cited in regards to timing on Lyme disease proper is absolutely correct.
However there are 18 other tick borne illnesses, and each one comes with its own set of rules. Mayo and every other western medicine practice does not test for them, treat them, or to be honest, even know much about them. In short they have absolutely zero expertise on co-infections
As an example, undiagnosed Powassan Virus has a mortality rate of about 15%, and you can get it in less than 15 minutes. As you would guess, almost all the cases are undiagnosed because they don't test for it! Wisconsin is also the national leader for this virus, so we're leading the pack!
For me I had Anaplasmosis, and late stage Anaplasmosis symptoms is organ failure. My nephrologist told me I would be on dialysis in 5 to 10 years - I was in stage three kidney failure. Fast-forward present day and my kidney function is normal again. Also worth noting is that you can get Anaplasmosis in as little as 10 to 12 hours. There are many people with kidney and liver disorders that have Anaplasmosis, but they never know, because exceedingly few western doctors know anything about it, and even if they did, they don't have a test to order to confirm it....
Rocky Mountain spotted fever is probably the nastiest one, and has a mortality rate of about 20%, and as high as 5% for folks that have a formal diagnosis.
Of course there are many symptoms that overlap, but some symptoms are very specific to one of the 19 or so: infections that ticks carry.
You can also get Lyme carditis which can be a deadly heart condition.
Lastly, there is an estimated 459,000 undiagnosed cases of Lyme Disease and associated co-infections.
It's not that simple J4Ice...
Undiagnosed Lyme and co-infections are huge money makers!
Your PCP can't find anything wrong for muscle and joint pain, so they send you to a Rheumatologist who can't find anything wrong, who sends you to an orthopedic doctor who can't find anything wrong, who sends you to a neurologist who can't find anything wrong, who sends you to a GI Doctor who can't find anything wrong, who sends you to a cardiologist who can't find anything wrong, who sends you to an internal medicine doctor who can't find anything wrong, who sends you to a nephrologist that can't find anything wrong. You go in circles for years, meanwhile the cash register is rolling!
They chase down diseases they think you might have like Lupus, Crohns, MS, fibromyalgia, arthritis, chronic Kidney disease, etc...
Then after a1,000 blood tests turning up no problem they treat the symptoms, an NSAID for muscle pain, a proton pump inhibitor for Gerd, a blood pressure med for high BP, a nerve pill to block muscle spasms, an anti anxiety to knock the edge off everything your going through, and an antibiotic in case there is some mystery infection they missed,
Now add in all the X-rays, office visits, MRI's, CT Scans, pills, even vision tests, and there is big money in treating the symptoms of Lyme rather than treating the infection itself - it's a money maker!
I have a family member who is an administrator at well known medical group. I'm told they can't treat outside of CDC protocol or they break the "do no harm" rule, and open themselves up to a lawsuit, so the cycle continues.
Until the CDC changes their guidelines, nothing will happen other than western medicine treating the symptoms of Lyme, and calling it everything and anything but Lyme...
Undiagnosed Lyme and co-infections are huge money makers!
Your PCP can't find anything wrong for muscle and joint pain, so they send you to a Rheumatologist who can't find anything wrong, who sends you to an orthopedic doctor who can't find anything wrong, who sends you to a neurologist who can't find anything wrong, who sends you to a GI Doctor who can't find anything wrong, who sends you to a cardiologist who can't find anything wrong, who sends you to an internal medicine doctor who can't find anything wrong, who sends you to a nephrologist that can't find anything wrong. You go in circles for years, meanwhile the cash register is rolling!
They chase down diseases they think you might have like Lupus, Crohns, MS, fibromyalgia, arthritis, chronic Kidney disease, etc...
Then after a1,000 blood tests turning up no problem they treat the symptoms, an NSAID for muscle pain, a proton pump inhibitor for Gerd, a blood pressure med for high BP, a nerve pill to block muscle spasms, an anti anxiety to knock the edge off everything your going through, and an antibiotic in case there is some mystery infection they missed,
Now add in all the X-rays, office visits, MRI's, CT Scans, pills, even vision tests, and there is big money in treating the symptoms of Lyme rather than treating the infection itself - it's a money maker!
I have a family member who is an administrator at well known medical group. I'm told they can't treat outside of CDC protocol or they break the "do no harm" rule, and open themselves up to a lawsuit, so the cycle continues.
Until the CDC changes their guidelines, nothing will happen other than western medicine treating the symptoms of Lyme, and calling it everything and anything but Lyme...
Displaying 1 to 15 of 355 posts
