Please check out my YouTube video if you want to hear the story instead of reading.
My Lyme story
- Pt 1. How I got Lyme, Bartonella and Mycoplasma; my first symptoms
- Pt 2. Sleep paralysis, systemic yeast, being visited by the dead, more pain
- Pt 3. This entry : )
- Pt 4. Digestive pain, disordered sensory processing. stress intolerance, mold
- Pt 5. Relapsing Fever, Bone Aches, Skin Rashes; Lupus Rheumatoid Arthritis tests negative
- Pt 6: Wasting; losing weigh on a high calorie diet, my dog dying of Lyme, extreme fatigue
- Pt 7. Finally got tested but did nothing about it; 5 months of bedridden with fatigue
Chronic Lyme disease story Pt 3 Intro
Remember that I didn’t know I had Lyme at this time. I just thought I was an utter wreck, incompetent at holding my life together. I was in such survival mode that I never had a moment of clarity that anything could be making me feel so bad.
I only thought what I felt: I AM EXHAUSTED, I AM IN PAIN and so on.
My day to day experiences with chronic unrelenting 8/10 pain and 2-3/10 energy (or lower, as it was during the exhaustion times) as a 21-24 year old (the time period of this Lyme story) shaped my self image and core beliefs.
I thought I was incapable, irresponsible, and not mature enough to “get it together”. I thought all of my issues were personality flaws.
However, on another level, I also felt like I had been dealt a tough hand in life. I knew I had much more pain than others, particular with my severe dysmenorrhea. I felt my body was just more prone to be painful…but when it came to getting sick all the time, having low energy or insomnia, I thought those were all my fault.
Many years later, when I was about 36/37 years old, it was a MASSIVE realization to learn that I had been chronically ill due to a particularly stealth group of bacteria (Borrelia, Bartonella and Mycoplasma are my worst), NOT because I just sucked at dealing with life.
My regular, normal state of health at the start of this story
- Carpel tunnel (wrist/hand/arm pain) that I had for 4 years – starting to resolve with moxa
- Plantar faciiatis (feet pain) that I had for 6 years – starting to resolve with moxa
- Upper back, shoulder, spine pain 7-8/10
- Severe dysmenorrhea
- Frequent colds, flus, respiratory infections (getting better)
- Sleep issues – sleep onset insomnia
- Low energy 3/10 energy on a good day
- Body pain – joints, muscles all over
- Systemic yeast
Symptoms that developed during this “insomnia flare” as I call it, during the summer when I was 21:
- Extreme fatigue – could hardly function
- Severe insomnia – sometimes wouldn’t sleep for 3 days in a row
- Dyspnea – shortness of breath
- Onset of chemical sensitivity
- Major Lyme brain/neuroborreliosis (could not think clearly)
- UTI/Kidney infection
Now I am going to break down these symptom experiences into what I think could be relevant details.
See the accompanying video for more detail. Because I ramble on video much easier than I do typing : )
Post Lyme Flare time
I had had a big flare prior to this, so this is kind of a “post flare” time.
Post flare times for me are a period of weakness, instability, and susceptibility to all sorts of problems. Basically, I feel weakened and sensitive and am prone to get more symptoms.
One nice thing is that a few months before the major insomnia summer of hell, I had a period where the sleep paralysis stopped, as well as the visitations from a dead friend. So I was at least getting rest.
Majorly bad decision making aka Lyme Brain
Before I get into the details, I want to set the stage.
The summer from hell begins with me making some terrible decisions. Know that I don’t mean to be punitive or judgmental to myself. I hold no malice.
But seriously, what was I thinking?!
As I prepared for making the video for this part of my lyme story, I felt a massive amount of frustration with my 21 year old self. I imaged that I stood across from my younger self and held her shoulder and looked straight into her eyes. I got in her face and said, “What were you thinking?! Why did you overcommit yourself? You were setting yourself up for the worst, instead of helping yourself cope and recover”.
When I was emoting to my 21 year old self in my imagination, it suddenly hit me like a ton of bricks: I was making poor decisions because I had major Lyme brain!
Discoveries like these are the reason I appreciate health story telling…these little details come out of hiding and I can see the story arch with more clarity and understanding, which for me is part of the healing process.
Summer School and extra jobs: Over-committing instead of convalescing
I signed up to take Organic Chemistry 1 and 2 over the summer. That’s wouldn’t be so bad, because Chemistry was my favorite science, except that I was totally and completely worn out from having had a huge Lyme flare just months prior.
I seriously cannot think of the motive for wanting to do summer school. Nobody was pressuring me. I was not ambitious. I did not care about graduating early or even on time.
The only thing I can recall is that I felt like I was falling behind in my university because of the rough time I had during my sophomore and junior years (due to EBV/mono and Lyme).
I felt like utter crap in every way, and I somehow decided to double down and try extra hard.
My health was deteriorating but I honestly, had no clue. I was in such fight or flight that I could not see the forrest for the trees.
Severe Cytokine Induced Insomnia
Insomnia has been one of my main Lyme and co-infections symptoms. Insomnia and fatigue were the first experiences of being chronically ill I had when I was 12 years old and got Bartonella from a flea-ridden kitten.
During the summer when I was 21, I had very bad insomnia. I would regularly not sleep a wink for 3 days in a row. It was painful and stressful. Then I had to get up and go to my 7 am organic chemistry class, and after that, go to one of my 3 jobs.
It was bad. This was the summer from hell. I was so tired that every cell of my body was screaming at me “GO TO BED AND NEVER COME OUT”. My body wanted me to quit life and move in with my grandma so I could sleep forever, and it told me all day long, every day.
The thing is that I heard how desperate my body was and how every part of me wanted to hibernate, but I never thought it was a real option. I never considered actually doing it, ever. I never thought I could quit university and get better.
I was on auto pilot that I had to go all the way through…the funny thing is that I did so terribly in my classes and also did not make good choices about my classes that I ended up taking 6 years to graduate. I may of graduated quicker if I actually had taken time off.
Palpitations and Severe Dyspnea aka Shortness of breath
I began to have palpitations, where my heart would be racing and beating hard in my chest. A cold sweat would break out all over my body. I felt shaky, dizzy and flushed. My vision would fade in and out.
I had times when it was an acute attack, and then I had times when it was low-grade and over a long period of time.
For many years I thought I thought these were panic attacks. But I did not have a sense of fear or anxiety at all. It was only the physical sensation of the palpitations…which DID bring on a flight or fight response and was really scary.
As my Lyme journey progressed, I see that palpitations are often related to Mycoplasma flares for me. But during this time, I think my nervous system was basically dysregulated and these palpitations were part of dysautonomia.
Along with the palpitations were severe shortness of breath aka dysnpea. Again, this is a Mycoplasma related symptom for me.
When I was in my late 30’s I did a Mycoplasma treatment for 2 years and as I was killing this super stealth parasite of a co-infection, I again had severe dyspnea. I would be so out of breath that I would have to lay down 3-10 times a day and breath in a certain way just to assure my brain that it did indeed have oxygen. This went on for about 6-8 months. Luckily I got over it. Someday I will share my favorite tips and herbs for dyspnea.
Every single day of this time of my life was filled with pain and suffering, perhaps the worst of my life. I tried to enjoy my life, my friend and my hobbies, but I couldn’t interface with any happiness of joy. I had none.
The funny thing is that I did NOT feel depressed. Of course many people with Lyme truly feel depressed, but what I felt was different. I had been depressed before and this was NOT that feeling. I just felt like all of my cells were shutting down and screaming NO NO NO. I do believe that for me, this is related to the brain inflammation.
Onset of Chemical Sensitivity
I was 21 was the when one day I was suddenly hit with chemical sensitivity.
I was cleaning house for a really nice elderly physics professor (because apparently I needed yet another job?) and out of nowhere my brain felt like it was assaulted by the cleaning products I was using.
The best way I can describe it is that it felt like there was an impact to my brain and senses. It felt like I was whacked in the head by a hunk of wood. My senses were reeling. Every cell in my body was suddenly screaming “NOOOO!!! RUNN!!!!” in response to the fumes of the cleaning products.
That lasted for almost 20 years! I am just now getting over chemical sensitivity, after treating Lyme and the co-infections (which stabilizes my histamine and mast cell tendencies) as well as doing DNRS.
I don’t think this is related to Lyme, but because I was so worn out from not sleeping, I started to have infections.
I cannot believe how therapeutic it has been to go through my Lyme story. It helps me to look at and possibly even release the the pain and trauma from my experiences of being sick, tired and in pain.
It helps me see that although I have been deeply impacted from chronic Lyme disease, there are some ways I can reclaim scraps of sovereignty of what is ME mixed in with what is LYME.
I’m not sure if that makes sense…but I am realizing that so much of what I thought were personal flaws in myself were the disease process.
If I can see the disease for what it is, I can begin to see ME for what I am.
Thanks for reading
Best of luck to all of you on your own healing journey.
Take good care,