Lyme Disease


It started out slowly.
His left knee, the one that had been getting sore on and off for years, was getting sore more often. 'Must be my age', he thought. 'Damn arthritis'.
He went on a 3-week vacation in September of 2017, and while in Spain and Germany, the pain got worse.
'Must be the beer and pork I'm not used to,' he told himself, only half-believing it himself.
Once back home, we went to the doctor. After listening, the doctor declared: "It's gout."
Rich went on Indomethacin for five days, and it didn't touch it at all.
In fact, the pain got worse. It now penetrated his right elbow as well, plus his left butt cheek went numb when he was sitting down for longer than 10 minutes.

We went back to the doctor. He listened patiently, and ordered a bunch of tests to check if it's arthritis. 
They all came back negative. According to his blood, he was as healthy as a horse!
But that's not how he felt. In fact, his health deteriorated at a scary speed.
He lost 20 pounds.
His brain felt foggy all the time. He couldn't concentrate, he couldn't think clearly, he couldn't focus. We watched the entire series of Mad Men together, and he couldn't remember the names of any of the characters except for Don Draper. You know it's bad when you forget Joan!
His memory was also poorly. He would pick up the phone to call someone, but couldn't remember whom.
He could never remember to take his pills; if I didn't keep track, he would have no idea if he took them that day or not.


But the worst was the pain.
The pain was intense and all-consuming. It was still worst in his left knee, but it also liked to wander up and down his leg, go into his right knee, or settle in both ankles.
It was so bad that he sometimes couldn't get off the toilet by himself.
One night, he called me to help him up, and when I slowly pulled him to his feet, he screamed because it hurt so much.
It was horrific. 

We kept going back to the doctor. He prescribed Prednisone, ordered more tests, and fast-tracked us to see a Rheumatologist.
The Prednisone didn't touch it.
Every test came back negative.
The rheumatologist couldn't find any arthritis in his body.
Since it didn't seem to be gout or arthritis, we considered Lupus, Fibromyalgia, or MS.
A co-worker suggested severe food allergies. "Try to go dairy-, gluten-, and sugar-free," was her advice.
A well-meaning friend suggested to radically change our diet and cut out everything we like to eat.
Rich had no appetite, and lost another 10 pounds.

I simply didn't know what to do anymore.
Rich was lying on the couch 23 hours a day, only dragging himself out the house once a day to feed his birds. As hard as it was for him to get off the couch, he always felt better after walking around for a while, which is why I made him do this chore.

This went on for 4 long, insufferable months.
We didn't know what was wrong with him.
We didn't know if it would ever get better.
Rich said that he couldn't go on like this. "I don't want to live like this if it doesn't get better" - this is about the worst thing you can hear from the person you love more than anything in the world.

We were desperate.


But you know the saying "It's darkest before the dawn" - and the dawn finally arrived after months of darkness.
It did so in the shape of a comment from a blog reader. When I eventually mentioned Rich's mystery illness on the blog, Michelle shared her own odyssey of tests and specialist visits, and her eventual diagnosis:
Lyme Disease.

I knew next to nothing about this disease, aside from that you got it from tick bites.
Since then, I have learnt quite a bit, and I want to share it with you.
Because here is the thing: you may have Lyme Disease and not know it!
Many people with diagnoses of rheumatoid arthritis, fibromyalgia, lupus, or dismissive doctors claiming "it's all in your head", may actually have Lyme Disease.

Lyme Disease is an inflammatory disorder that is spread to humans through tick bites. Ticks pick up the bacteria through infected animals like deer, mice, or birds, and pass it on to whoever is unfortunate enough to be bitten next.


Lyme disease is sneaky.
It is dubbed "the mystery disease" due to the difficulty to diagnose it. There are more than 100 symptoms associated with Lyme disease, which may or may not show up immediately. In many cases, patients won't have any symptoms for months or even years. If you are bitten by a nymph tick you may never know it; they are the size of this period →.

Some people get the telltale bulls-eye rash, but many people don't. Blood tests often come back with false negatives, particularly in the early stages of the disease. The reason for this is that the bacteria 
don't circulate in the blood but interact directly with the cell tissue they infect, making it difficult to detect. They also replicate slowly, meaning the number of bacteria found in the patient stays small. 
These characteristics are responsible for the difficulty of diagnosing Lyme Disease; those damn bacteria hide well.
The blood test is looking for antibodies in the blood, and they need time to develop.
To make matters even worse, there is no universally accepted test for Lyme disease; Lyme tests in Canada are largely flawed (source).


List of symptoms (taken from the Canadian Lyme Disease Foundation website):
(I highlighted Rich's symptoms)


Head, Face, Neck
  • Unexplained hair loss
  • Headache, mild or severe, seizures
  • Pressure in head, white matter lesions in brain (MRI)
  • Twitching of facial or other muscles
  • Facial paralysis (Bell’s Palsy, Horner’s syndrome)
  • Tingling of nose, (tip of) tongue, cheek or facial flushing
  • Stiff or painful neck
  • Jaw pain or stiffness
  • Dental problems
  • Sore throat, clearing throat a lot, phlegm, hoarseness, runny nose
Eyes/Vision 
  • Double or blurry vision
  • Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light
  • Flashing lights, peripheral waves or phantom images in corner of eyes
Ears/Hearing
  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears
Digestive and Excretory Systems
  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Musculoskeletal System
  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
  • Shortness of breath, can’t get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis, heart blockage
Neurologic System
  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness
  • Light-headedness, wooziness
Psychological Well-being
  • Mood swings, irritability, bi-polar disorder
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Too much sleep, or insomnia
  • Difficulty falling or staying asleep
  • Narcolepsy, sleep apnea
  • Panic attacks, anxiety
Mental Capability
  • Memory loss (short or long term)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Difficulty finding commonly used words
  • Stammering speech
  • Forgetting how to perform simple tasks
Reproduction and Sexuality
  • Loss of sex drive
  • Sexual dysfunction
  • Unexplained menstrual pain, irregularity
  • Unexplained breast pain, discharge
  • Testicular or pelvic pain
General Well-being
  • Phantom smells
  • Unexplained weight gain or loss
  • Extreme fatigue
  • Swollen glands or lymph nodes
  • Unexplained fevers (high or low grade)
  • Continual infections (sinus, kidney, eye, etc.)
  • Symptoms seem to change, come and go
  • Pain migrates (moves) to different body parts
  • Early on, experienced a “flu-like” illness, after which you have not since felt well
  • Low body temperature
  • Allergies or chemical sensitivities
  • Increased effect from alcohol and possible worse hangover
(To print this list, click here)


The blood test is actually two tests: a Two-Tier Testing process that measures the patient's antibody response to the infection, not the infection itself.
Rich got tested with the common screening test ELISA (enzyme-linked immunosorbent assay), which came back positive.
The second test, called the Western Blot, came back negative.

This is common.
Remember, Lyme is notorious for being difficult to detect through a blood test alone. If tested in the early stages, the antibodies haven't developed yet. 
Rich had the same symptoms 55 years ago, when he was 8 years old. He was hospitalised for 6 weeks, and the doctors never figured out what he had. "Rheumatic fever and juvenile rheumatoid arthritis" was the tentative (and false) diagnosis.
It took months for him to get better, and he missed a year of school because of that.

We are convinced that he contracted Lyme Disease then, long before the medical community knew of Lyme (it was discovered in 1981 by scientist Willy Burgdorfer).
If untreated, Lyme Disease won't simply disappear; it stays with you.
Knowing that, the negative Western Blood test makes sense; not only is late stage antibody testing much less accurate, Rich also has a different strain of bacteria.


Treatment
Since it's a bacterial infection, the treatment is antibiotics.
Rich started on antibiotics (Doxycycline 100mg/twice a day) and is currently on week 5 of his treatment.
There is a lively debate about the pros and cons of antibiotics, and there are many who'd rather take a natural approach with herbs, diet, and natural supplements. 
I know little about it, because we want to go the traditional western medicine route for now; but the book Unlocking Lyme contains a wealth of information about traditional and holistic ways to treat and heal Lyme Disease.

We are still in the thick of it. After over half a decade of having the bacteria in his body, it will take a long time for Rich to fully heal. 
The good news is, he is feeling a lot better! His mind fog is gone, short-term memory is vastly improved (in fact, it's better than it has been in years; we suspect that the dormant Lyme bacteria in his body were sneakily affecting his brain for years, if not decades), and his energy level is steadily rising. 
The not-so good news is that he is still in quite a lot of pain. The pain has migrated from his lower body into his upper body, particularly his shoulders. It's been lodged in there for a good 4 weeks now, and it's not going anywhere. Sometimes it travels down his arms into his hands, or it likes to hang out below his collar bone in his pec muscle. Apart from the suckiness of chronic pain, it's also seriously messing with his ability to sleep. 

I will keep this section updated as Rich's healing progresses, and with anything else we're learning about this complicated disease. 

Here is a list of resources I found helpful:
LymeDisease.org website

Share:

2 comments

  1. I can't seem to find when you posted it, but here is my info if it is still relevant to you.
    I was diagnosed with Lyme at the end of Nov, 2017. I live in FL in the US, and apparently a lot of drs around here claim "Lyme doesn't exist in FL". I had a dr that uses both western med (massive antibiotics, I had an IV port and did daily infusions) and eastern med (herbal supplements). The Lyme apparently creates little mountains or colonies in the body, and they secrete a biofilm to form a hard crust on the mountain that is hard for the antibiotic to penetrate. You should also take some form of biofilm agent (something to dissolve the biofilm) to make the antibiotics more effective. There are a few herbs that are very well known and medically studied & published that do just that (ex: stevia).

    ReplyDelete
  2. also, Lyme does greatly impact your ability to naturally detox when you encounter bad stuff in your environment. At the same time as the Lyme tests my dr did a 24 hour urine collection to test for heavy metals. I do have a high amount of various heavy metals in my system, and that can also cause some of the same symptoms as the Lyme. Once I did 4 mths of the daily IV antibiotics I switched to a heavy metal detox.

    ReplyDelete

© Farm Girl | All rights reserved.
Blog Layout Created by pipdig