Lyme Disease

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.

Had a follow up with my internal medicine doctor on Wednesday (who I like quite a bit.) 

I brought my labs from IGenex to share with her, and as she reviewed them, she looked perplexed.

I asked her why she looked perplexed, and she said she was unfamiliar with many of the tests that IGenex had completed, and she was trying to discern what she was reviewing. 

Your average PCP has a McDonalds menu (more or less) of tests that are available to them to order (CBC, Metabolic, Elisha, etc) and the lab results I shared with her are not available for her to order (or even view that they exist).

At any rate, after she reviewed, she said she was really happy we figured out what was going on. 

For me it solidified why functional medicine (embracing the east and the west) is so important if you're looking for answers!

Good article BA! 

​Where are ticks found? Maps show where the disease-carrying parasites live​​​

Not following CDC protocol?  Imagine that.  Sounds similar to where we were a few years ago.

Clueless,

I took your advice and had a phone consult with the tick center at Howard Young Medical Center in Minocqua - you were correct, they're very good. I wanted to compare notes on treatment options.

Interestingly they treat Lyme to ILADS protocol, not CDC protocol (same as the doctor I'm seeing) Also, like all LLD's (Lyme Literate Doctors) they don't take insurance.

The reason LLD's don't take insurance is they don't treat Lyme per Western Medicine or CDC guidelines, so it's cash and carry.  

They also use the same lab (Igenex) that I was referred to. Interestingly, for where I live, Howard Young referred me to a local LLD, which oddly enough is the doctor that I'm currently seeing.

The take away here is that if you suspect you have a tick borne illness, find a LLD - their testing and treatment options are worlds apart from Western medicine. 

Brent, I’m sure you already know this…lean hard into your faith and family.  They will see you through this challenge.  Amen brother!

Brent, Daggum!!! Man this sure knocks me down "gobsmacked"... Sending strong prayers up for ya...Heck of a thing to be dealing with. Hope all gets better!!!

Eyesman-

So many folks with a similar story (including me) - just a few examples. 

The Elisha Lyme test detects Borrelia burgdorferi, not any of the other 19 tick borne diseases that are equally as detrimental (and some worse).

Moreover, even for (Lyme) Borrelia burgdorferi specifically, the Elisha misses almost 50% of the cases. 

Western medicine doesn't know what they don't know. You need a Lyme Literate Doctor (LLD), your average PCP knows shockingly little about testing and treatment. 

You may want to give Igenex a try EM :)

Clueless, I will look into them! For now I'm happy with the LLD who found it on the first visit!  But I will definitely research them - thank you!

Brent sorry to hear of your diagnosis. My prayers and best wishes.
Did you get any treatment at the Tickborn Illeness Center at Howard Young in Woodruff?
I have read good things about them an they seem to be an authority on treating tick disease.

Wishing you  the best Brent in your fight of  this horrible disease.  Good luck.

Best wishes Brent for a successful recovery. Twenty some years ago I had a classic bite mark with a bullseye rash. Went to my primary care general practitioner who then tested for Lymes which came back negative. She did prescribe a course of Doxycycline. I’ve had issues with sinus infections all my life. They were usually treated with Doxycycline 2-4 times a year. Following the incident with the bullseye bite which was at about 40 years of age I noticed more muscle and joint pain. In the next few years I was tested a few more times for Lymes all that were negative. The primary care doctor attributed the pains to age and doing construction work. As time went on I developed heart arrhythmia issues. Cardiologist treated that with medication with some success but eventually performed an ablation to remedy it. That was successful but soon after the arythmia developed in another area in the heart. That continues to be treated with medication with reasonable success. I’ve learned to live with the muscle and joint pain that never changed once I retired. Now at 66 years old the muscle and joint pain as well as the heart arythmia are ever present. Several years ago I did some research on Lymes, the testing for it and treatment and found similar thing that Brent and others on this forum have found. I’ve had more than a few conversations with the primary care doctor about the possibility of Lymes or other tick borne infections and the link to the symptoms I’ve had. They all dismissed them with other likely explanations and relied heavily on the test results. When I spoke of the false negative track record of the standard test they dismissed that as a falsehood. I have a friend who had multiple symptoms of Lymes and bounced from one doctor to another with treatments for symptom relief but not a cure for the cause. She eventually found a Lymes aware doctor and got tested properly and diagnosed. She went through an extensive treatment regiment and continues on a maintenance treatment routine. She has had a fairly good recovery. Doing some guesswork coupled with my research I do believe I did have Lymes or a companion disease and with the frequent Doxycycline treatments for the chronic sinus infections was enough to keep the Lymes at bay but not cure it. 

Best of luck Brent...continue to keep your positive attitude.

Thanks to all for the well wishes and prayers :)

Someone made a post about kidney function and Lyme Disease in dogs. Interestingly it can do the same in humans.

Declining kidney function is one of the reasons my doctor suspected a tickborne illness.

My doctor was actually fairly cautious on the choice of antibiotic for this reason.

I will be on a mix of antibiotics as well as natural supplements for the foreseeable future. As noted in an earlier post, I have three separate tickborne illnesses (Bartonella, Bartonella Hensalea, and Anaplasmosis)

When I look back, everything I've had in the past five years - it can be attributed to a tickborne illness.

It blows me away that western medicine knows (and acknowledges) all of the tick borne illnesses and their symptoms, but doesn't test for anything beyond the Lyme bacteria (Borrelia burgdorferi) so many people go on for so many years with no diagnosis, even death, and have no idea. It's just  crazy to me!

This has been a huge awakening on my part as far as Western medicine goes. It certainly has its place, but it is not the end all be all! You have to be your own advocate!

It's going take a bit, but the path forward starts today :) 

Sorry to hear the news but wishing you the best Brent.. I remember following your journey/frustrations years ago and have learned a lot from your posts (and others).  I know this does not help your situation but your information/feedback on Lymes was helpful for a buddy who had similar experiences with the Medical community.. He eventually found a Lyme's Dr. and was able to be diagnosed correctly and treated.  Thank you (and others) for sharing the information to help others..   

Pfizer and Valneva Complete Recruitment for Phase 3 VALOR Trial for Lyme Disease Vaccine Candidate, VLA15

December 4, 20239,437* participants enrolled at sites across the U.S., Europe and Canada in areas where Lyme disease is endemic

Trial conclusion expected by year-end 2025

Pfizer aims to submit regulatory filings in the U.S. and Europe in 2026