A Cautionary Tale... (1 Viewer)

[Mtbcoach]

I'm sharing this story with my friends and others in our club who enjoy being outside, seeing landscapes, horizons, sunrises and sunsets unfiltered by anything, doesn't matter what one is doing as long as it is in the great outdoors...​

I've been a bit secretive with some personal health issues I've been struggling with, specifically since I had my shoulder rebuilt in April '13. In the process of rehabilitation for my shoulder surgery, a neurological deficit was identified, focused on in PT without resolution. The tingling and weakness I was experiencing in my right hand was thought to be a "brachial-plexus" inflammation, released from PT regardless.

Fast forward to summer of '13 where I rode my motorcycle to Las Vegas where Regina and I attended my Athletic Training professional conference then went on our amazing tour of the Rockies from Mexican Hat to Yellowstone on the Western slope, Yellowstone to Beaver Creek on the Eastern slope where Regina flew home and I finished the 7k mile trip without issue. Yet, the numbness, tingling and weakness felt like it was getting worse.

Fearing I damaged my shoulder, I returned to my Ortho Sept '13 who re-examined his work, declared shoulder good, cervical spine is the issue. Series of diagnostics showed issues in my neck which sent me into a direction that took 3 years to alter. As the condition seemed to move into my left hand, the neurologist focused on my messed up neck. While this was going on, I'd also been having other issues, fatigue, gastro-intestinal distress, speech/choking issues, cardiovascular issues...nobody putting any connection, just a bunch of specialists, clearing me from their specialty and their office with no answer/diagnosis.

3 neurologists, 2 neurosurgeons, 3 MRI's, 3 nerve conduction studies, months of PT, colonoscopy, endoscopy, 8 expensive blood tests looking for rare blood disorders, rheumatology consult...leaving all without any diagnosis such that my "primary" neurologist thought I should get a neuro-psych evaluation despite the last MRI stated "severe cervical degeneration throughout".

See my new General Practice MD, previous MD left, new guy fresh out of service, Navy MD assigned to Marines. He take extra time with me, as its our 2nd visit and him listening to my frustration. He asks "why didn't anyone test for Lyme disease yet?" I questioned it also, I told everyone through the process I've been bit several times by ticks, in various locations from CA to WA to OR to CO to NC.

Two blood viles, 5 blood tests later comes the news last week...negative for Lyme, positive for Rocky Mountain Spotted Fever disease. Undiagnosed and previously untreated for at least 5 years after reviewing my medical history and finding other links in an effort to find a timeline for my infection. Treatment of antibiotics and anti-seizure meds, first must kill the RMSF infection, hope damage is done, not a good prognosis for return to normal functions.

Why am I sharing? Don't ignore signs and symptoms of tick borne diseases. Upon reflection, I have had the signature/cardinal sign for RMSF more than once. Being "manly", ignoring signs and symptoms, has me paying a severe price, allowing the infection to live in my body for many years. RMSF has the highest rate for death of tick borne diseases @15-20%, I consider myself lucky.

I acted macho, who needs to wear Deet or tick repellent when walking through URE, Harlan and the many other places I've travelled without regular application of something that could have easily prevented all this. When I had the rash, I dismissed it as something else, when I had flu-like symptoms along with the rash, dismissed any connection. Then, I add dogs, who can easily transport ticks to me, my vehicle and into the home.

P L E A S E take the time to read through the signs and symptoms of tick borne diseases, use tick repellent that works, wear tall socks, inspect each other after being in the brush and DO NOT IGNORE the signs and symptoms.

Share with your friends and family. If one catches it early, appropriate treatment of antibiotics will eliminate long term issues. If, after the initial treatment, symptoms persist, go back and get another round as needed. Be persistent, it can make a huge difference in the final outcome...​

Ticks | CDC
Symptoms of Tickborne Illness | Ticks | CDC

 

[GLTHFJ60]

I'm just glad you've got it figured it out my friend

Time to buy some DEET!!

 

[AndrewHadji]

Thanks for sharing. One of my close friends also had Lyme, untreated for a couple of years, He lost most motor functions within those few years. Had to walk with a walker. Thankfully this was now 10 or so years ago and you could not tell there was an issue. Hoping you a speedy recovery my friend.

 

[izzyandsue]

Thank you for sharing! Reinforces what I learned from DIs long ago, long pants and long sleeves in the jungle...

 

[jamesurq]

Thanks for the warning - I've had two tick bites in the last few months - one was removed correctly (circular motion, qtip) the other just ripped out by hand. Both have developed a small rash/scar. I'll definitely keep the symptoms you listed in mind.

Glad you figured it out!!!

 

[JToobe]

So sorry to hear of your experience and appreciate you sharing.....our oldest daughter got Lyme's about 8 years ago (we believe in the Lake Jocasse/Lake Keowee area here in SC) and it took us 9+ mos. to get it diagnosed acurately. It has been a difficult journey for her and she was under the care of Dr. Jemsek in Washington DC (previously he was in Huntersville, NC) and made some improvement until about 2 years ago. We were connected with someone in Flat Rock/Hendersonville, who thru non-traditional means, had successfully treated Lyme's and I am thankful to say she is back to normal!

 

[LockedNLoaded]

Wow sorry to hear about your ordeal, but I am glad to hear it appears you are on the right path now. I actually have Lyme Disease and when I thought I had contracted it I had to almost force my doctor to order a test. At first he insisted it was not necessary, but I was adamant about getting tested, so he eventually gave in. That was about 10 years ago and have been dealing with it since. Even with the early diagnosis, there have been complications that at times seemed almost impossible to fix with traditional medicine. However, I was introduced to a Dr. that believed the majority of my issues could be corrected by manipulating my Endocannabinoid system and suggested a Cannabis treatment. To be honest the difference was night and day. I don't mean to be dramatic, but back then I would argue that this doctor saved my life. During that time the joint pain and numerous Neurological issues were really getting out of hand and made day to day living very difficult. Now since you have the correct diagnosis, I hope they can put you on the right treatment plan that works for you. I certainly wish you a full recovery!

 

[RedHeadedStepChild]

Wow! I can't believe you lived with RMSF that long. About 20+years ago, It put both my brother and my mother in the hospital in less than a week and nearly killed my mom. Ticks don't f*** around.
Where I grew up in SE Mass, ticks are rampant. We have RMSF, Lyme, ehrlichia, tularemia, and babeosis. Every one of them will mess you up or kill you.
DEET all the way, but if you're spending a lot of time in an area of exposure (ie hunting, survey work, etc), check out permethrin.

 

[roadstr6]

Permethrin concentrate can be found at your local Tractor Supply in gallon jugs . Much cheaper than buying the pre-cut 1% Sawyers brand stuff at the outdoor stores. Cut it with water yourself and spray your stuff. Lasts multiple washings on fabrics. All my camping stuff is coated with it. It works too!

 

[angerhater]

glad you figured it out and thanks for the heads up. I have a few friends and family that have suffered Lymes disease, ones brother dying from RMSF. Ticks are a problem, the cooties they carry are far worse... be safe friends

 

[lt1fire]

Damn Jerry that sucks big time.

Andrea's best friend got a tick (one an old ONSC trip strangely enough) and didn't realize she had contracted Lyme disease before it was too late. She has it bad..... her pills she had to take each month are ungodly expensive and it got so bad it has pretty much hampered her entire life up to this point.

That story and your has me paranoid about ticks everytime I feel a little off I check myself for any signs again and count back to how long its been since I was in an area I could get one.

 

[Mtbcoach]

Thanks for everyone's kind words. Right now, it sucks, hoping some meds, hard work and a little luck get me back close to where I was.

 

[roadstr6]

Hang in there Jerry.

 

[little_joe]

After talking with you at Johnny's over the holiday weekend, Jerry, I was shaken by what you shared. And believe it or not, every day since you've been in my thoughts.

While the diagnosis seems to be awful news, at least now you know what you're dealing with and hopefully you and your team can develop a regimen that will get you back to normal as soon as possible. I also thank you for posting this, it truly is of value to all of us, and to our families and friends.

I'll continue pulling for you and thinking of you. I couldn't keep up with your travel plans so I don't recall when you'll be away - I am anxious to come by. Regardless, if there is anything I can do or assist with, tell me and I'd be thrilled to help any time.

Stay strong, my friend.

 

[David70FJ40]

Praying for a full recovery.

 

[JohnVee]

A friend of mine has been tearing himself up for almost 10 years since he found out that both his son and daughter went undiagnosed with Lyme Disease for almost 5 years. Daughter has done quite well with recovery. Son has had some issues but nothing that can be definitively linked to the Lyme, though my friend doesn't see it that way.

Damn bugs. We've been treating our camp/outdoor stuff with Permethrin and using various sprays on our skin. I love me some DEET, but I think I've seen the bad side of it regarding some side effects so now I'm a bit wary. At least it's easy enough to find in various concentrations.

Like Izzy said...long sleeves, pants, hat, etc. I like light colored clothes so those basteerds show up easily.

Best wishes to you, Jerry. Thanks for the blunt honesty and good info.

 

[Fort Knox]

Jerry, so sorry you've had so much difficulty finding out what was really the cause, but glad you finally have an answer. Obviously, I hope you recover as quickly and fully as possible. As others have said, thanks for keeping us in the loop and for the warnings. Like Joe said, if there's anything I can do to help, let me know brother!

 

[Green Hell Mustang]

Started using permethrin because of things like this and the fact that we find the little nasties in our backyard. Then again, Izzy is right, long sleeves, long pants, and a hat help out a good deal.

 

[fj40z]

I fight ticks constantly, either from being outside all day from work or from recreation. When we bought the farm about 12 years ago it was the worst place for ticks I have ever seen. A 100 yard walk through one of the fields would yield about 30 ticks, I've never seen anything like it. I tried everything I could find as far as repellent and most worked fairly well but 3M Ultrathon was a guaranteed no ticks. Another thing that helped was spraying it liberally on my boots or shoes as well as everything else. Also, I know this goes against the grain but it's easier to spot ticks in shorts, and I can feel them crawling on my skin where I can't feel them crawling on clothing. Lots of times the ticks just crawl on your pant legs undetected until they can find an entry point, which is often around your waistband then they bury in or migrate from there but with shorts I can see or feel them long before they bite. I spend at least 60-70 hours a week outside and in the past 3 years I've only been bitten by a tick once but I have pulled hundreds off over the years just crawling. Here's a pic of the 3M Ultrathon, the active ingredient is just plain old Deet but there's something about this stuff that ticks hate with a passion.

 

[weejub]

Wow! I will be sure to make my family realize the dangers here Thank you all for sharing!


We used Permathrin the Army, but only on equipment, and not on clothes that touched our skin.

I would feel safe using DEET on all clothes.

We put a ton of it on socks and on top of hats, but we also spray exposed legs/necks etc. (maybe shouldn't).

We have given up on "skin so soft" and other methods.