Jamie’s Story

Site created on March 17, 2020

Welcome to our CaringBridge website. We are using this website to share information about Lyme Disease which will hopefully help others beat Lyme.   Thank you for visiting.


Lyme disease? 

 

I am sharing my experience with possible Lyme disease to hopefully help others and to thank everyone for the prayers and positive thoughts. As some of you might already know, diagnosing Lyme Disease is quite hard and could take years to do so, when the bacteria had already done so much damage to your body.

 

Executive Summary

I noticed constant twitching in my muscles after a workout in December.  The muscle spasms never stopped.  I started to feel sick with lots of problems.  Went to the family doctor, ran blood tests, everything was normal.  In January, we were thinking it was overtraining and I just needed to rest.  As the sickness got worse, I went to a new general practitioner who ran the same blood work plus some new blood tests.  Those tests were all normal except for 3 tests. On March 6th I met with a neurologist who ruled out ALS and MS, but did not rule out possible Lyme Disease.  On March 8th I sent an email to the new general doctor, making a case for antibiotic treatment (basically begging).  On March 10th I started 21 days of antibiotics.  By March 31st, I was feeling the best I have felt in 4 months.  As of writing this May 7th, I am almost back to 100%.  Below is my story.  I will try to include a lot of details to hopefully help others.  I want to say thank you to my clients, family and friends who gave me enormous strength during the most difficult health event of my life. 

 




Newest Update

Journal entry by Jamie Carey

Is it Lyme Disease??? 

You would think it’s a simple process to figure this out, however the testing for Lyme has some issues and it makes the diagnosis very difficult. It could take years to diagnose someone, what allows the bacteria to do much damage to your health, in some cases irreversible damage. So, what causes Lyme disease?  Lyme comes from ticks.  Those nasty ticks.  They can infect people, pets, and wild animals.  Growing up in Ohio my grandfather had a farm where I remember getting bit by a tick, and also remember seeing some of the farm dogs carrying huge ticks on them.  Ticks are terrible. 

Fast forward the last three years I started into mountain bike riding.  I had never really been into mountain bike riding until I had a big crash on a motorcycle (dirt bike) and fractured my skull, hand and damaged my hip.  About the same time, I was recovering from the accident my son was a freshman in high school, and he started participating in the high school mountain bike race team.  Within a few months I was riding the mountain bike with my son and decided this will be my new activity. 

On one of our first mountain bike rides together, I noticed a tick crawling on me after the ride.  I just happened to take a picture of the tick. 

One of the reasons we thought it could be Lyme disease was the high exposure to ticks in the past 3 years.  However, as you will read below, the process of getting a Lyme diagnosis is not simple. In 2017, 2018 and 2019 I had ticks on me each year.  In 2018 I was driving home from a mountain bike race in Nevada City and I felt something bite me, I pulled over and jumped out, and on my leg was a tick.

In 2018 we went back to the farm in Ohio, I did not see any ticks on me but I could have been exposed again. In 2019 I saw a tick on me during a mountain bike race in Fort Ord. I was able to flick the tick off as I raced. I just don’t know if I was bit.

In 2019 I also had a nasty bug bite with a raised center and a big red circle around it.  Since I have always been tick aware and I always check for ticks, I didn’t think it was a tick bite. I thought it was a spider bite. I wish I would have taken a picture. A picture could have saved me months of time and sickness.  Now I know to always take a picture of any weird bite or rash.  

Throughout 2019 I started to notice what I thought were isolated symptoms, but for each of them we blamed over training, however when we put all the symptoms together, we realized it was something else.  One of the symptoms was weight loss. My normal “in shape weight” is around 185 pounds, however in 2019 I was down to 168 pounds.  We thought the weight loss was due to training 10 to 13 hours a week.  

Another symptom was I was getting very light headed after a ride. I would go for a ride in the evening, then have dinner and at some point, in the evening I would get up from the couch and almost pass out.  Sometimes I would feel the blood rushing through my body.  It was extreme, almost to the point of blacking out each time.  I thought it could be dehydration, so I changed what I was drinking during the rides and the issue went away for a while.

My muscles were very stiff.  Of course, I blamed it on over training too, but my muscles were not only sore, they were stiff and so were my joints, to the point where I was rolling and stretching 30 minutes a day but the stiffness only got worse.  Also, my right hip which was injured in my motorcycle accident was stiff, like locked up.  I saw a Chiropractor and a sports muscle therapist.

Another injury from my motorcycle accident was my fractured orbital bone (eye socket). In 2019 I started to feel that side of my face tingle and I would have some pressure behind my right eye.  I had my eyes checked and the health of my eyes were normal.  The tingling in the right side of my face was daily, however I thought it was the nerves coming back from the nerve damage from the fracture.

I was getting very little sleep but I never felt tired.  It was like my brain was running 1000 miles per hour versus my normal 100 miles per hour. 

On December 28, 2019 I did an indoor bike training, took my shower and watched Ohio State play Clemson. I knew something was wrong during the game, not because Ohio State lost (which will make a true fan sick) but I knew something was wrong with my body.  My body was twitching, my legs looked like and felt like someone was playing the piano on them. 

I knew at that point something was very wrong, but at first, I was still blaming it on over training and low minerals.  I started to feel sick, but I was still thinking I just needed more rest and more electrolytes. 

On 1/12/2020 I went to Granite Bay and raced the mountain bike.  I knew the night before in the hotel that something was very wrong. I did race the next day, but on Monday I made an appointment with my general doctor.  I had a complete physical back in September 2019. On January 27th, I had my appointment and all my blood work looked normal.  On January 30th I texted my doctor friend Jennifer a video of my legs, she texted back saying I needed to see a neurologist as soon as possible. Jennifer told me it can take months to get into a neurologist, the two she recommended could see me at the end of June.  So, I called my general doctor and requested a referral to a neurologist.  The doctor’s assistant wanted to wait a few weeks but I demanded a referral now, and I got one, my appointment was March 6th.  

I continued to become sicker.  I felt something was attacking my health even though I didn’t know what.  Instead of spending 10 hours or more a week training, I spend all that time researching the possible cause.  

By February 10th I knew I needed another doctor to examine me.  Gina, my right hand in the business agreed and said I should try a different group of doctors.  On February 18th I met with a new general doctor (AF).  We discussed everything and he did a lot of tests in the office and ordered the same blood work, plus some other tests.  During our appointment, I requested a test for Lyme disease and he (AF) agreed.  AF was very concerned and I could tell.  I don’t think I will ever forget the look on his face and the concern in his eyes.  AF wanted me to see the neurologist.  

The reason I requested the Lyme test was I had spent so much time researching possible diseases based on symptoms, and all the research kept coming back to three diseases: ALS, MS or Lyme disease.  

My mom’s sister (my aunt) had ALS in her 60’s.  I was worried because of my symptoms but I also knew I had high tick exposure.  The hardest part was wanting to fight to get better but not knowing what to fight.  It was mentally crushing.  In the February time frame I started reviewing my estate plan and business continuation plan.  I started preparing for a terrible illness or death.  Lots of dark days.  However, I kept thinking whatever it is maybe I could be the first person to beat it or maybe because of my fight I would end up helping many others.  Helping others gave me more mental strength then I could ever imagine.  

Back to the results, on February 19, 2020, I found out all my blood work was normal, except three tests.

  1. All blood work normal except for the following
    1. ANA Direct, Positive
    2. Sjogren’s Anti-ss-b, 1.4 AL, the Anti-ss-a was negative
    3. LYME IGG/IGM AB .91 ISR  (Equivocal .91 – 1.09)

On February 24th, I emailed AF. Below is the email exchange.

“Hi Doc,
What is the name of the Lyme test I had? I know was bitten by a tick a few years ago and I have pulled other ticks off me. (I even have a picture of one of ticks in the past three years and it appears to be the kind that carries Lyme.
I took the Horowitz/MSIDS Questionnaire and the results were 82. Highly probable for tick borne illness but maybe it's a bogus process.
Two other items, last year I had a bug bite, never saw the bug but it did give me a rash circle. The rash lasted for about a week or a little bit more. Also, I have a light rash in the upper leg area, I thought it was due to cycling all the time but I haven't been riding and I still have it, I can send a picture if helpful.
Thank you for the testing and analyzing!
Jamie Carey

This is the response from AF.

This testing is for Borrelia Burgdorferia antibody testing for specific IgG and IgM antibodies.
The results were negative/undetectable.

I do not think you have any form of Lyme's disease based on the negative results of this test.

At this time, I think your best bet is to keep your appointments with the neurologists.
Respectfully,
AM

My next step was the neurologist appointment on 3/6/2020.  

The neurologist examined me and ruled out ALS and MS.  I asked about Lyme disease and she said it might be Lyme but Lyme is very hard to diagnose. She gave me a diagnosis of benign fasciculations.  I requested a referral to a top infectious disease doctor.  She agreed this would be a great next step and gave me the referral.  I want to thank Jojo (my wife) and her best friend Bruno.  Bruno is married to a top infectious disease specialist out of Washington DC.  They reviewed my tests and were trying to get me into the very best specialist.  I also asked the neurologist if she could treat me for Lyme with antibiotics, however she said she wouldn't treat me without a solid diagnosis, so I should see the infectious disease specialist in order to narrow down and eliminate a lot of other possible diagnoses.

On 3/8/2020 I wrote an email to AF.  I thought with Coronavirus coming I might not get to see the infectious disease specialist for a long time.  I was also thinking that any antibiotic treatment might be difficult to get because of possible shortages due to the supply chain.

This is the email I sent AF on 3/8/2020.

Hi AM,

The neurologist said it's not ALS, not MS. Her diagnosis is benign fascinations. She said which could be caused by Lyme disease. She said it could be something else but she discussed the Lyme test I received is wrong 40% of the time and she said my .91 number was equivocal. I requested a referral to UCSF infectious disease because they have a lot of experience with Lyme and other infectious diseases. However, this appointment could be months away and I am worried about going there with the Coronavirus at this time.

Based on the CDC recommendations, they say symptoms, exposure to ticks and testing should be used. I know I have had a high exposure to ticks including a bite mark that has the same appearance of a tick bite with a circle rash sometime last year. In the past four years I have found ticks crawling on me after rides.

I would rather not wait months to get into the UCSF specialist and start treatment for Lyme now. The CDC treatment is Doxycycline 100mg twice daily 14 to 21 days or Amoxicillin,500 Mg three times per day 14 to 21 days. The sooner treatment starts the better the odds that I don't have long term side effects.
Can you please start this treatment?

Best regards
Jamie Carey

 

This is AF’s reply on 3/10/2020

I have no issues with trying a 3-week course of doxycycline. You will be more susceptible to sunburns, so wear sunscreen. And it shouldn't mess with your gut too much, but I suggest daily probiotic capsules or yogurt with live bacteria cultures on a daily basis.

Good luck, and go see the infectious disease specialist as you were asked to do.
And as an aside, in your first line, I think you meant "fasciculations" not "fascinations".

Get better.
AM

 

On 3/10/2020 I started the 21 days of antibiotics.  After 3 days I became very sick.  They call it a Herxheimer reaction.  Basically, you feel like you are dying, as if your body is shutting down. 

About a week after the 21 days of antibiotics I started feeling much better and almost everything has improved back to normal at this point. I still have some twitching but much less and I don’t feel sick. 

I am a huge fan of AF.  He cared, he looked outside the box and he tried a treatment even though we didn’t know for sure if I had Lyme.  

I don’t want to get too far into the Lyme testing.  Overall, there is a 40% or more chance of receiving a false negative Lyme test.  I think the CDC has dropped the ball with this testing. The current testing looks for the antibody (exposure) to the bacteria, however too many people have Lyme however the test is negative.  There is a doctor in the Northeast that developed a DNA Lyme test but the CDC has blocked it and he has filed a lawsuit.  Lyme testing is a mess and it has been for 20 plus years.  

Here is a list of symptoms I experienced. 

  1. Chills in legs and lower back, tingling in face below right eye, some eye pressure
  2. Twitching all over body but 24/7 in calves
  3. Pain and weird feeling in kidneys and lower ribs
  4. Feeling of sinus issues and sore throat comes and goes
  5. Sore lower neck off and on
  6. Fatigue off and on
  7. Some sweating of hands and feet various times when sitting
  8. Rash around upper leg
  9. Trouble speaking at times
  10. Trouble walking, less balance
  11. Stiffness in body (extreme)
  12. Back would go out, couldn’t walk
  13. Feeling of something eating at ligaments or tendon in arm
  14. Feeling of flu on and off
  15. Chest or lung pains
  16. Difficulty breathing
  17. Depression or sadness

Overall, I could tell I had a serious sickness that was getting worse.   I looked and felt like something was destroying my body.  I only missed two days of work during this timeframe but I couldn’t do much outside of work each day.

As of today, I am feeling great.  I want to thank everyone for the support.  I know the stress of the unknown was very difficult on my kids, mom and wife.  Thank you to my clients and friends, they were very positive and supportive.  Some of my most senior clients weren’t worried about the Coronavirus impacting them, they were more worried about my health.  

Words can’t express my appreciation. Thank you!




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