Thursday, March 12, 2015

More Details (The Longer Version)

Thanks for all the nice comments on Facebook and on my post yesterday. I truly appreciate all the prayers and good wishes. 

Today I thought I'd share what happened when my doctor told me I had lyme.

First, though, I should share that I was bitten by a tick 15 years ago at a HomeArama event that I was working at. I was a vendor at the event and was working as a custom closet designer at the time. 

I remember sitting there waiting for people to come into the tent on their way to see the gorgeous show houses, when I felt a tickle on my right earlobe. I reached up to scratch my ear, when something moved. I immediately flicked it off thinking it was a Japanese beetle, but I briefly saw that it was a tick as it was being flung away from me. I noticed my fingers had blood on them and reached for something to stop the bleeding on my earlobe. 

I didn't think anything of it at the time. I thought the tick had to be attached for 36 hours and you had to get the bulls eye rash. Only then would you could have Lyme disease. I didn't develop the rash and the tick wasn't attached very long, so I thought I was safe.

Over the next decade or so, one ailment after another plagued me. I saw several doctors and specialists who just attributed it to thyroid problems and getting older. I just learned to live with whatever ailment came up next. I can't say for certain that lyme disease caused all of this or even if the the bacteria triggered an autoimmune response - I'll never know for sure.

Fast forward to last June...We were in Atlanta and walked to about a half mile to a restaurant and my legs felt like they had spiders crawling up and down them. Then, in the following months, I developed a slight numbness on the bottom of my feet and it felt like the pads of my feet were swelling. In the previous 12 months, I had experienced a drunk like feeling when I ate too many carbohydrates or went too long without a meal. This happened about once a month and it was pretty embarrassing. 
I had my doctor here in Charlotte do some labs to check for diabetes, but he said things looked fine. He had no idea why it was happening.

One of the ailments I experience during the whole decade (plus) was muscle pain and fatigue. I always had to take lots of breaks and sit down whenever I could. I had exercise intolerance- meaning if I exercised, I would be in bed for the next 3 hours or the next day. 

This past Fall, the fatigue was getting worse and I assertively brought it up when I went to see my integrative doctor in November. I brought a list of  symptoms on my tablet and read them to him one by one.

Fatigue, get tired easily
tingling in legs, feet
numbness in feet
feet feel hot
swollen pads in feet
cramps in feet if I point my toes
spidery nerve sensations up and down legs when I walk a bit
unsteady on my feet/balance problems
arms ache 
ringing ears
hands very weak and losing fine motor skills
muscle cramps and stabbing pains
vision getting worse, some days worse than others
have to go to the bathroom all the time
pain in my back with lots of cracks, pain in hip
neck stiffness, pain
weird hollow/itchy/nauseous feeling in throat/esophagus
feeling drugged after eating
can't find words
some days can't think or do math
some days I'm emotional (I'm not usually and  consider myself to be very logical)

I told the doctor I either have MS or lyme. (they both have the same symptoms- lyme can also manifest itself as arthritis, Lupus, ALS, etc., depending on what part of the body the bacteria invade)
He didn't think I had MS, but asked me if I wanted to be tested for lyme.
From what I had read in the past few months, I didn't think I would test positive for lyme because the standard test for lyme is unreliable. Borrelia bacteria don't hang out in the blood, they hide out in the central and peripheral nervous system, in the brain, organs and joints. They morph from simple spirochetes and form cysts and biofilm, making it difficult to detect in the blood.  I had a lot of these symptoms for a long time...some for a few months, some for over a year, and some for over a decade. Someone who's had lyme for a long time,  will most likely test negative on the Western Blot, so I didn't see much of a point to being tested for lyme, but I said yes anyway.

I went back to see the doctor in 4 weeks. By this time, I didn't feel confident driving because my Integrative doctor was 2 hours away and I was having weird cognitive symptoms, so my husband drove me to the appointment. The doctor told me the lyme test came back positive and that it was a new infection, and I most likely got it in October - just 3-4 weeks before the test.
This didn't make sense to me. I had gotten about 5 bites on my legs during the warm spell in October, but I couldn't figure out what had bitten me as I woke up with them. They weren't the typical pattern of swelling for mosquitoes or fleas and I hadn't seen any ticks on me (it was Fall, so the ticks would have been larger and not nymphs that look like a speck of pepper).

My doctor knew about lyme, but didn't know how to treat it. He did know that early lyme disease was treated with antibiotics. He suggested I go see an infectious disease doctor and if "he wouldn't do anything with me", to go to a well known doctor who treated lyme in Raleigh.

When I got home, I started reading everything I could find about lyme on the internet. I learned that infectious disease doctors blindly follow the CDC guidelines and believe that lyme is cured by a 2 or 3 week course of antibiotics and you're cured. Despite knowing that an infectious disease doctor would be a waste of time and wouldn't treat me, I made an appointment with one and was able to schedule an appointment two days later.

I went to see the doctor and brought a copy of my labs.
All of you who have experience with lyme, know what happened next...

After speaking with me for 5 minutes the doctor said I didn't have lyme disease. She rattled of the reasons why I couldn't possibly have it....
Lyme is rare in North Carolina, It would have been some time in October when I was bitten and ticks aren't active then... I only tested positive for 2 out of 10 bands of lyme and the CDC requires 5...since I had symptoms for awhile and the labs showed that I had a recent infection, I must have something else such as an autoimmune disease. 

I asked if it could be a reinfection, because of the tick bite in 2000, but she said  if I had lyme, since I had gone to the urgent care the week before (I went because I thought I had a kidney infection) and they had given me 10 days of Augmentin*, which also kills Lyme (the bacteria is called Borrelia bergdorferi), that the course of antibiotics would have taken care of it.

Yep, a waste of time...and money.

No additional tests.No recommendations.Nothing.

Just a denial that I had lyme.

I later found out that many people who have lyme disease had the same experience. 
I called my Integrative doctor and asked him for a prescription of doxycycline for 11 days, so at least I would have the CDC recommended 21 days of antibiotics, which he did.

So what did I do after that?
I searched the internet to find out how Lyme was treated.

It was deeply disturbing and frightening. Learning how costly and debilitating the treatment could be was horribly depressing. I wanted someone else to find out all of this for me and tell me which way to go.  It was extremely difficult to sort through all the information I found with brain fog, being emotional and having what felt like Alzheimer's. I saved every link with good information on it in an email to myself so I wouldn't forget. 

That's where I'll stop for today.
Next time, I'll tell you what I learned, how I sorted it out and which direction I took. 

Hope you'll stop by soon.


You can see part 3, Sorting It All Out 
by  HERE

* interesting note about what the Urgent Care found... 
 the Urgent Care I go to checked for what type of bacteria was causing the infection and tested to see if the bacteria is resistant to any of the commonly prescribed antibiotics. When they called me back a week later, they left a message saying that they found a lot of bacteria in my urine, but they couldn't tell what kind it was. I'm guessing they were spirochetes and possibly borrelia in the cystic form.

1 comment:

  1. Glad that you stood up for yourself and were able to get the prescription for antibiotics from a different doctor. Physicians who won't treat a possible illness b/c it is rare in that area, should hang up their license to practice in my opinion. I wonder if they had never heard the expression "There is a first time for everything" before. Can't wait for the next post.