Here it is. The grand Lyme post. I’ve intended to write it for a while, but I finally sat down the last couple of days to write it.
This is not a total overview of my experience with Lyme—I could easily write a memoir about the whole experience. This post is a simple timeline outlining the symptoms. While I have talked about what it has been like to live with Lyme’s disease, I haven’t said all of what is wrong.
I’ve created a timeline from the time of my infection to today of symptoms, along with major moments of diagnosis and healing. I’ve probably left a lot out. It is quite a blur, but I think this captures the main points.
A few notes to make before I begin.
First, this is not meant as medical advice. I am not a doctor and do not intend to diagnose or treat you. So don’t sue me according to what I say here.
Second, I have a very high level of pain tolerance. I can take pain very well (had all four wisdom teeth pulled at once), but the pain with Lyme is the worst I’ve had in my life. What was worse was regular pain killers didn’t work, which is why the pain symptoms were such a problem.
Third, there is a chance that I contracted the disease earlier and that the disease lay dormant for several years and came out in 2013 due to stress and busyness. I ate fairly healthy and didn’t have any main health issues until college. I ended up with Candida (a yeast infection) in the summer of 2010 and had a stress crash at the beginning of that fall. From that point on I experienced migraines (a few a year) when I had no previous history of it.
Fourth, I think that my experience with Lyme is on the more severe end. This isn’t to compare for pity or bragging rights, simply to say that what I experienced has been far worse than many people, and yet mild compared to others. Everyone’s story is different, and this is mine.
This is a long post and mostly text, but I wanted this information clear for people to find. I also wrote a shorter post about how it affects everyday life if you would find that helpful.
Mid-May/Early June was bit unknowingly by a tick
For a brief second my left arm/leg had an odd moment where they seemed “off” somehow. Very, very brief. Almost unnoticeable.
There was a moment where it seemed like my left side randomly “fell asleep” for a few seconds.
Repeated July moment plus at least two more where the sleep lasted more than a few seconds and I couldn’t shake it off.
Early September I note that I want to keep tabs on the problem. I experience it a couple more times. I grow a little more tired, and I start to get headaches. The issues click on and off for a few minutes like they are turned on and off like a light switch.
Early October I travel twice for my Master’s program. The first day my left side goes numb while driving. I think it’s bad posture. The second day my left side experiences it worse, and I’m falling asleep in class and having difficulty processing information though I’m not sure why. I arrive home and announce that something is wrong.
By mid-October I have now added incredible back pain, nearly constant migraines, chronic fatigue, weakness, and vertigo to my list of symptoms. Everything is getting worse. I start seeing a chiropractor and a regular physician. The physician tests for Lyme, it comes back negative. My chiropractor X-rays my back and can see degenerative disks in my neck and lower back.
End of October I’m having my first of two MRI’s. I’m having difficulty concentrating and the pain cannot be stopped with pain killers. I’m constantly having neurological and motor issues and total lack of energy. I’ve started to have trouble with work and have started to go home early fairly often.
During the month of November I filed for a two month’s leave of absence from work. The first MRI had shown spots on the brain, but it was neither cancer nor MS, so I went to see a neurologist. I had my second MRI and was scheduled for a spinal tap because nothing found matched with MS. By the end of the month we were sure it was Lyme and I stopped seeing the neurologist (he didn’t believe in Lyme’s disease).
The rest of the month is a blur. I still have a huge black space of memory during that time. I developed severe memory issues, the inability to read and think complexly. I had only 2-6 hours a week when my brain worked well enough to do homework for my Master’s. I went from slowly walking through the house to crawling on my hands and knees, and lastly to crawling on my belly because I was so weak. (My family helped me when they were around and able.) I had to shower with a seat and shook most of the time. I could hardly sit up.
There was never a moment I wasn’t in pain. All of my body hurt—my head, spine, joints, muscles…everything radiated with a deep ache. Parts of my body would turn off or shut down randomly. One time all my body shut down. It was like someone was slowly lowering me into a liquid that turned my body off, from my feet to my head. I spent twenty minutes on the verge of death. I was literally looking out of my eyes rather than seeing through my eyes—I couldn’t hear, and though my eyes were open I was seeing through them from inside my body. I don’t completely understand it, but I know I was near death. (It took a few years for me to acknowledge that because it felt dramatic, but it is true.)
I had a doctor’s appointment for a different Lyme test scheduled in early December. My parents and I had an idea it was Lyme so I began to watch my diet very closely and try to eat as healthy as possible.
The night before the doctor’s appointment I was up most of the night with heart palpitations. It was so scary I didn’t know what would happen. (I am thankful that, though heart issues persist, they have never been that bad again.) When I woke up I went to the bathroom to get dressed. When I took my nightshirt off I saw that my breasts were leaking some sort of grey-brown watery-milky liquid.
Because my body was so destroyed we didn’t want to try an antibiotic and wipe out the rest of my immune system so I started on an herb called
I spent my semester finals (they were online) with headphones on and curled on a blanket on the floor because I couldn’t hold myself up. (By God’s grace I passed them with an A and A- —they were my two hardest classes.) By Christmas I could sit up most of the time. I was working to get in with a Lyme specialist, at least my parents were. My brain was so messed up and I had lost such a drive to do anything (not in a depression way, but extreme lack of motivation), but my parents were able to help get me to the help I needed.
Mid-January I returned to my job in retail (as a floor associate). I’m still not sure how I survived. Even today I don’t want to take a physically demanding job because it is too hard on me. I had to leave early several days, switch only to day hours, and only work for four hour periods part-time…it was all I could handle.
I was still in pain, still had head and motor problems, heart issues, etc, but they were milder so I could carry on and survive, so to speak. It was this month that I received the results from the test confirming that I did have Lyme’s disease.
I believe I didn’t get into
When the Lyme bacteria (and some of the other infections that often come with a tick bite) die off they release chemicals into the body that make you sick. As a result, you feel worse before you feel better, and you can’t kill off anything too quickly or your body is overwhelmed and can’t rid of the toxins fast enough and you experience what is called a Herxheimer reaction. I began to use
After a few
Gradually, everything improved. In the US, there is a general idea that when you treat something you just go out and destroy it with a drug, but Lyme works differently. Rather than an invading army it is more like a group of ninjas or secret agents who hide and strike when the opportune comes. If you attack it with strong drugs over time, you can destroy as much of the body as the bacteria. Because of the initial damage to my system, my strategy has been to build up my immune system so it can take out the bacteria when they show up. As a result, the recovery has taken years and I’m still not done.
I still live with pain (though manageable), and plenty of symptoms—though most in a milder form than before.
Because the healing has come so slow, I can’t remember when everything happened. I can give you a few key parts of the experience over the following years.
By this time we had noticed that my body experienced terrible rises of symptoms whenever a new weather front came in. Living in the midwest meant that I was downed almost every other day. I also experienced extreme sensitivity to sound. Loud sounds, bass, and even mild tones triggered various symptoms, but mostly heart palpitations which made it hard to attend church services (the fact that they were trying to figure out a new sound system didn’t help). My mom and I were regularly talking about moving and finding a new state to live where the weather wouldn’t change.
During the summer of
In January 2017 I could hardly walk around long, and I couldn’t figure out what made me sick again. We went to the dentist and discovered I had an infected tooth—it is a common problem from Lyme’s disease. I had to get a root canal, and for a brief time, I bounced back in strength. Despite this I had no regular social life, I was too weak.
Summer-Winter of 2017
When spring came I didn’t have my usual boost of strength. In fact, I went traveling for my sister’s graduation and returned to have my health back to where it was before. Summer came and my strength didn’t come back. I started on some new herbs which helped with some symptoms I was having, but all the while I was noticing how food was passing more and more through my body.
By Winter I knew something was wrong. I had thought it was leaky gut and was dieting to help the stomach heal but it kept getting worse. The fall had brought on some mild joint pain. By November it was agonizing. It was was sharp and stabbing in all my joints, just like fibromyalgia. While the initial Lyme infection had caused agonizing pain, this was a whole other level. There were three super moons around that time, and each one brought such intensity of symptoms I could do nothing without pain.
Still, my stomach wasn’t getting any better and I couldn’t tell why.
I had noticed, along with the fibro, increasing mental health symptoms—anxiety, depression, mood swings… my sister left to teach in South Korea, which left me even more alone than I was before. It was the right stress trigger and all the mental health issues swooped in at increasing levels.
There were days I actually thought about death. I got panic attacks, fits of extreme rage, mood swings. Many days I wanted to curl up in a corner and not do anything. It only got worse with time.
As a note, these mental health issues were all happening during the times I made posts about changing the focus of my blog. If you ever thought that I might have an issue with decisions it wasn’t that at all, but the problems caused, as I later discovered, by a secondary infection called Bartonella.
May rolled around and I was l
All food was passing through me. Nothing digested. No nutrients were absorbed. In a round-about way, I was starving to death. Even the easiest of foods to digest would go through unscathed by my stomach. I could only eat chicken, turkey, and white rice. Nothing else would work.
I remember one day looking down at my body while I changed. I saw and felt how my bones were starting to press through my skin. It was then that I thought, “You know, I think I’m dying.” It sounds weird to say that you can be dying and have trouble acknowledging it, but you can.
At one point I told my parents that I needed to see a doctor as soon as possible because I knew that if I didn’t get help soon something bad would happen. The mental health issues happened almost every day and were in the extremes. My eyes were very sensitive to lights and ached.
My mom and I are part of a facebook group of others with Lyme and my mom read about people treating parasites. We looked up parasite symptoms and they matched what I had. I took the time to map out all the symptoms I had ever experienced and realized that the ones I experienced now where almost all new. Parasites are also active around full moons, and the super moons had brought intense flares of pain, so we were sure we found the culprit.
I went to the doctor in June and went on an herb that helps to clear out parasites and other issues, and within three days I could walk again. Within the next
Over time the mood issues decreased but didn’t go away. We looked at more symptoms and realized they were consistent with B
Today, March 2019
I’ve gone back to being unable to exercise (but that could also have been fall and winter). I experienced the best health I have over a fall and a winter. My sense of smell and taste have returned over the last couple months. My mood issues have significantly decreased, my memory is back to a far better functioning level, and I can use my brain in a lot of the old ways before Lyme, which tells me that things are on the mend.
I’ve learned to rest and allow my body to slowly heal. It isn’t a fun process, but it is better than the alternative.
While I’ve skipped over some time periods in this timeline I’ve still experienced many of the same symptoms over the past five years. I’ve compiled a list of all the symptoms I’ve had since contracting Lyme and starred the ones I still experience. These are not as intense as before but still get in the way of me being able to live, socialize, and have the freedom to do what I want.
Here’s the full list. (Note: most of the stomach issues were caused by the parasites, though Lyme can weaken the stomach which is probably why it got so bad. Some symptoms are caused by Lyme and/or secondary infections contracted by the tick bite, but it is hard to tell what causes what sometimes.)
*means I’ve experienced it at least once in the last three months
- Spots on
brain(I haven’t had an MRI in five years so I don’t know if it is there still)
- Blurriness *
- Unable to process visual details *
- Headaches *
- Dull left temple pain *
- Short term memory loss *
- Long term memory loss
- Inability to comprehend speech, reading, visual stimulus, etc.
- Temporary blindness (twice, approximately 20 minutes each)
- Distance perception
- Light sensitivity *
- Eye spots/floaters *
- Random tooth infection/root canal
- Cystic acne (all over) *
- Loss of smell
- Loss of taste
- Trouble breathing (air hunger)
- Constantly stuffy/runny/full nose *
- Mood swings
- Extreme sudden rage
- Anxiety *
- Panic Attacks
- Pain in neck and spine *
- Degenerative disks in spine*
- Brittle nails *
- Throat closure (trouble breathing)
- Fibromyalgia pain
- Burst black blood vessels under
finger nailsand toe nails(caused by inflammation around heart—not just a Lyme issue. If you notice this, please see a doctor!) *
- Heart palpitations
- Racing heart
- Strained heart beats *
- Swollen/aching breasts *
- Random milk(?)/liquid production in breasts *
- Kidney discomfort/pain *
- Stomach pain
- Gall bladder pain
- Intestinal pain
- Inability to digest food
- Trouble digesting food *
- Inability to absorb nutrients from food
- Inability to process oxalates *
- Joint pain (arthritis) *
- Shaking *
- Tremors in hands *
- Loss of strength in limbs *
- Weakness *
- Fatigue *
- Chronic fatigue *
- Loss of will to do things (not a death wish, but lack of will to do things) *
- Depression *
- Numbness—loss of ability to sense on a skin and inner tissue level *
- Loss of energy *
- Weight loss
- Body parts shutting down
- Anemia/jaundice (slightly) *
- Misaligned hormonal cycles *
- Overall pain and aches *
- Social anxiety *
- Inability to keep warm
- Hot flashes
- Inhibited motor skills *
- Pain in shins
- Sensitivity to cheap metals and synthetic fibers *
- Increased allergies *
- Insomnia *
- Developed food allergies *
- Repeated movement pain *
- Sensitive nerves *
- Lower back pain *
- Racing Mind *
- Toes popping out joint *
- Sensitivity to sounds
- Sensitivity to weather patterns
- Compromised immune system *
- Muscles feeling stiff, kind of like an uncracked glow stick *
- Aching eyes *
Not the Final Word
To those of you fighting Lyme’s disease, keep going. I’m still a long way from healed, but it is nearer than before. I’m praying that doctors will find a practical solution and that Lyme disease, in all its forms and severities, will be recognized by the medical community.
If you want a really great book and resources, I might recommend Dr. Bill Rawls site and book, Unlocking Lyme. I’ve read through a lot of information and found
I’ll be honest, I’m writing this post so I remember where I’ve come from, to help others, and also as a testimony. For the last several years I’ve been praying for God to perform a miracle healing, and I believe it will happen. This is a record of where I am now, and how God has brought me through this trial.
Thank you for reading, let me know if there is anything else you would like to know. I plan to write up a post for those of you who don’t have Lyme’s disease and what you can do for them.
If you want to contact me, you can reach out on social media, use the contact page, or share your story in the comments.
I pray that this is helpful and encouraging to someone. Lyme can be a long and lonely road, and it nice to know that others have survived and are surviving the journey.
Thank you all for your time, thoughts, and prayers.