Chronic Lyme disease story: sleep paralysis, systemic yeast, and PAIN when I was 20 -

My first really big flare – 4 months of intense joint pain, yeast, sleep paralysis and spiritual disturbance

This is Part 2 of my Lyme story. It’s a LONG story. It’s more like an outline with key points highlighted.

Some topic I will be covering about my chronic Lyme and co-infection story:

Happy in my first year of university, yet in bad pain
Being gaslit and learning to shrink myself around “successful” people
Mono and lingering symptoms, which led me to discover herbal medicine
Systemic yeast: driving me absolutely bananas
New back pain
How this turned into a huge Lyme flare I had when I was 20
Sleep paralysis and soul-sucking demons haunting my dreams
Visitations by distressed dead people (Bartonella?)
How I made some wrong dietary decisions that helped me ‘get out’ of my body
Feeling unsure on how to get through the day

Please check out my YouTube video if you want to hear the story instead of reading (WARNING: it’s the longest video I’ve ever made! In hindsight it should’ve been 3 separate videos. eek!!).

If you want to listen/read more about my Lyme story then check out these links. I am slooooowly working on making them blog entries, as well as making chapters on YT for each different topic on each video, so it is easier to find things of interest.

I am still very much in Lyme brain and nerve pain world; so typing and editing videos are hard for me. Being super concise is also hard because I tend to repeat myself. So please know that these very non-professional at this point.

My Lyme story

My health during the first 2 years of university

So happy, but yet struggling to be in so much pain

The first year of college was an amazing time for me. I loved everything about college life and was genuinely 10/10 happy. I remember sitting at my desk in my dorm room on dark Friday evening, my personal projects and studies spread around me, feeling so happy to just be (can you tell I am an introvert?!).

But the mornings…the mornings were a deeply stressful experience.

I’d wake, excited to greet yet another day of my glorious college life, when I’d swing my feet over the edge of the bed, step onto the floor to stand up and WHAM! I’d be flooded with the pain from my feet/legs and my wrists/arms.

The pain was always there. I shouldn’t have been surprised.

Yet somehow my brain had a log of the realization of ALWAYS IN PAIN. There were times when I’d be swept up in feeling good mentally and emotionally that for one fraction of a moment, I’d forget the pain.

I’d hobble to the bathroom, struggling to walk, struggling to use my hands to open doors, turn facets, grab things. The overwhelm would flood my system and I’d be ushered back into the heavy dread of figuring out how I’d exist alongside this pain, somehow.

Shrinking my sense of self after being gaslight and judged for how I felt

See the video for this part of the story. In short, I had a boyfriend who said he didn’t believe that carpal tunnel existed which made me a liar. This plus some other experiences led me to not associated with go-getter, productive, successful people, because I/d be deemed not good enough.

Mono

I had mono when I was 19. It took me a long time to get over from it. Also see the video for more on this.

This led me to discovering herbal medicine for the first time. Prior to this, I was interested in medicine and was pre-med in university, but I knew I couldn’t make it in the cutthroat, workaholic land of med school because I was so tired and sick all the time.

I made my first herbal tea for my chronic sore throat and lower respiratory infection that was mycoplasma-y and probably yet another walking pneumonia, and it worked! I remember it had Oregon Grape, Red Root, Echinacea purpurea root, Burdock, Elderberries and more. Those are still some of my favorite herbs to this day, and ones that are incredibly useful for my chronic infections.

That first sip of tea; it was elating. It was the only thing that ever gave me a modicum of relief from my chronic sore throat as it washed over my swollen infected tonsils and raw red throat.

From that point on, I was in love with botanical medicine.

4 month Big Lyme flare when I was 20

New upper back pain

One night I stayed up late typing a paper. A few hours into writing, my back started to ache.

By the morning, it was a severe pain. Similar to the other pain I had, I got injured and the pain simply never went away. Constant and chronic. 7-8/10 with flares to 9/10. In later years, the back pain would make my back go out and I’d be laid up in bed…it still does! But I have had times when it has gotten better, like when I went to acupuncture school and got regular treatments.

The pain is between my right scapula and the spine around T3, 4, 5, 6. I always thought it was rhomboids but it wasn’t…looking back at it, I believe it is really related to Borrelia and Bartonella being stored in the nerve ganglia, dural tube and surrounding tissues. It is as much a neurological problem as musculoskeletal. Also I had an injury to this area when I was a kid. Chronic infections can mess up areas that have already been injured.

this is me in the prime of my life. I'm young, hot and full of moderate to severe joint pain

Pain all over – Chronic Lyme, Chronic Pain

Let me describe my health before the big flare started:

Foot pain – 8/10 made it hard to walk or stand
Carpal tunnel, 7-8/10 loss function of left hand – hard to use my hands: writing, cooking, driving, holding, making, typing, working (I was a seamstress and clerk)
Constant 7-9/10 back pain – hard to read, sit, stand, hold a backpack, write, type, sleep
Constant colds, sore throats. 2 colds a month, sore throat daily
Severe dysmenorrhea

Now let’s add in the additional fun parts (I have savage humor) of this BIG Flare.

Systemic yeast, driving me bananas, with die off and herxing
Intense brain fog and brain inflammation, like a concussion
Sleep paralysis
Being visited by dead people

Systemic Yeast

Have you every had a super itchy vaginal yeast infection? I had that, but it spread through my whole body. This one was really rough because it droving me f-ing mad. Also the yeast die off is harsh- it feels like a part of you is dying co,bined with severe herxing.

In the video I talk about how I used tetracycline for 18 months prior. This really messed up my microbiota and yeast took over. As I talk about in the video, tetra is related to doxy.

This yeast led to intense brain fog – I felt like a brick was wedged in my head.I had a lot of internal itching. Particularly in my belly and chest, legs, feet. Red, hot, irritated.

This really led to the first BIG flare for multiple reasons. For one, it was mentally disturbing. Please allow me to speak metaphorically: the yeast felt like a possession, it was driving me own soul out of my body and setting up.

Funny that it felt like that metaphorically. Because that is what happened to me during my dream state. (PS in Chinese medicine, there is a concept of Gu and Gui… ghosts (which may think as a pathogen) and parasites that prey on the body and energy/spirit.

Sleep paralysis

Two types:

The paralysis part – not being able to move or wake up. Inconvenient, loss of control.
Soul-sucking demon part – felt like I was being torn apart and brought to a different realm. Unsettling and exhausting.

One strange thing about the sleep paralysis was that I always knew what time it was in the dream, when I was released from the clutches of the dream, I’d look at the clock and it would always match up.

The sleep paralysis drained me on multiple levels. It was damaging to my bodily sovereignty, and it brought me out of my body and out of this life into a plane that was counter to that of earthly life (again, see the video for more details).

Being visited by the dead

I had recurrent visits from a descended friend. She was not passed over, and was lost, very disturbed, fearful, distraught.

This happened more and more until the vast majority of my time, waking or asleep, was spent in the land of the unwell dead/alternate reality.

I really believe that you can be a type of person who can healthfully work with the dead and/or go to other realms. Like TV mediums, for example. However, I had no training, no inner guidance and I was in a lot of pain and extremely exhausted and stressed. It was no time for a crash course in being a psychopomp. A psychopomp is guider of souls…a medium talks to the dead and a psychopomp guides them, if that makes sense.

It felt like I was in a little SPIRITUAL DEATH PROCESS. In Chinese medicine, the moment of death is when Yin and Yang separate. Being chronically ill and having flares is like 999 little death processes. I know that sounds extreme and perhaps morbid, but if you have had chronic illness then I can bet you know what I mean.

4 months of Lyme flaring and being acutely disturbed

This is the flare. It was like being on a demented spinning amusement park ride. Like in a washing machine from hell. Just kept going and ramping.

Desperation, pleading for mercy

During this time I would wake up in the morning, desperately praying (and I didn’t even belong to a religion!! – so you know I am beyond my capacity). Reminds me of this song. Please don’t come at me – I’m not an Imagine Dragons fan, I’m just talking about the lyrics.

When a non-religious person is pleading for mercy, then it must be bad. I would wish with all my heart, please help me through this day because I have no idea how I can keep feeling this way.

Let me be clear, I was NOT depressed. My mood was 9/10 happy. I had been depressed in the past and this was not at all like that. Lyme infections can damage the hippocampus, sometimes up to 80-90% of neuronal damage of the hippocampus is seen. The hippocampus is also altered in times of depression (and isolation), so there may be an overlap, but the mechanisms are different. See Buhner’s Lyme book page 145 for more details on hippocampal damage during Lyme.

I simply did not compute understand how it was HUMANLY possible to make it through the day and night because it hurt so much and itching from the inside out and I couldn’t even get rest when I was sleeping.

Helpful dreams aka nervous system regulation

Luckily, I did have a lot of joy around me. I had really good friends and a sense of community.

Nature was extremely comforting at this time. I lived on the big sandbar called Park Point on the south shore of Lake Superior, Gitchie Gami as the local Anishinaabe called the lake, and the lake’s presence felt like medicine for my weary soul.

I had dreams where I was my 20 year old self in fetal position inside of an energetic space much like a womb, being held within the all-encompassing love and care and tenderness of a very large being, who looked like a really big woman.

She would say, “it’s alright, I’m here for you. I got you. My name is Celia, too’.

In those dreams I felt my body shedding layers of tense pain. They taught me how to be held when I feel completely overwhelmed and lost. It’s something that I still work on to this very day. It was like regulating my nervous system.

I became even more interested in the mythology, and the physiology, of the uterus/womb space. I was always drawn to reproductive health and learning about menstruation because of the severe dysmenorrhea I had – I would read any gyno health books I could get my hands on out of desperation. This was important for my path because I became a birth doula 4 years later, and a full spectrum doula in the future, too.

But during this specific time, I became attuned to pregnancy and birth. I would draw and paint and watch images of fetuses unfold, like they were drawing themselves.

Symbolically I needed the medicine of the gestation/birth/death archetypes in my life. It helped me see that I was always in a cycle and things may come and things may go, and you have to surrender to the process while seeing the inner yet invisible power available from the void space.

PLEASE NOTE I absolutely do not like glorifying pain and suffering. But I do find that some tools sometimes come to help us when we are in pain, suffering or desperate, and for that I am thankful.

Discovery of holistic health

This time was pivotal for me because it was when I discovered holistic health. Prior to this, I was very interested in medicine, but like I said above, I knew I couldn’t be pre-med because I was too tired and would get sick with colds/sore throat/flus anytime I had to push myself. For a time I thought I’d be a nurse partitioner but even that would be too demanding for my body.

My relationship with holistic medicine could be a whole series of articles because it’s a big part of my life. Herbalism is my #1 love, and it is directly tied into my lyme story.

Summary of what I did for my health

As I write this for myself as part of my own health storytelling process, I feel the pull to briefly comment on some things I did for my health at this time.

Moxa for pain

In September 2002, around the time of the beginning of this 4 month flare, I started to work at the office of an herbalist and acupuncturist. It was from that experience that I began to explore Chinese medicine and nutrition as well as herbalism.

I was instructed in how to use moxa for my plantar faciiatis and carpal tunnel. I used moxa (which is a heat therapy technique) on a daily basis. After a year, the pain in both my feet and hands were completely gone. Whew! It was an absolutely lifesaving godsend to me. I had had the feet pain for 6 years and the wrist pain for 4 years.

Yeast

I did a yeast recovery diet, that was helpful but took a loooooong time. Like at least 18 month, maybe 2 years for it to truly resolve.

I tried many herbs for yeast, but I think because I was brand new at herbalsim, I didn’t utilize them to the full extent and thus didn’t see much benefit. Also treatments are often not straight forward or easy when you have Lyme and co-infections; they complicate healing. Funny that one of the herbs for yeast I tried for yeast was Olive leaf, which is very, very important for treating mycoplasma. I wonder if I was having flares because the olive leaf was killing some microbes?

The best thing for the yeast was doing vaginal suppositories of Boric acid. It obviously helped with a vaginal yeast overgrowth, but it also slowly helped the systemic yeast, but again, it took a number of years.

Quitting sugar

Around this time I stopped eating sugar. It was a part of the anti-yeast diet, of course, but it also made me have in increase in body pain, colds and infections and sore throat.

Quitting sugar was a huge fricken deal! I was never a massive sweet eater. I never liked candy, ice cream, or soda. But I would eat a baked good maybe 1-2 times a week.

I learned I couldn’t tolerate any sugar whatsoever, like in ketchup, salad dressings, coffee drinks, alcohol…it was intense. That also was a many years process…I went through a LOT of honey to help me through the sugar cravings. The yeast REALLY called for sugar and when it craved it, I would suffer. Whew! Compassion to anyone cutting out sugar for health reasons – be patient, my friends.

Immune system support

This could be a number of posts in and of itself, because it was quite comprehensive. But I will introduce the premise here, in case it can inspire others.

I did a lot of herbs and things for my immune system. It really, really REALLY helped. The first time I fended off a beginning of a sore throat from turning into a full blown infection/cold, I felt like I won the lottery. I literally got down on my knees and cried tears of joy – and I am not a cryer so that’s saying a lot.

I made a lot of herbal decoctions (an herbal tea that is simmered because it is made with harder roots/seeds than leaves and flowers) with immune system support herbs. Echinacea was my best friend. I also began to take supplement for the first time ever. Oral zinc and Vitamin C were the most important to me.

PLEASE NOTE: Echinacea can be too stimulating for some people with auto-immunity. It is rare, but it happens. So it is always best to work with an herbalist if you are brand new to herbalism and you have autoimmunity. Also know that Echinacea can be extremely helpful even at large, regular doses. Echinacea angustafolia is helpful for rebuilding collagen which is destroyed with Lyme, and is best taken at moderate to large doses over a year or more, so this is not to scare you away nor demonize Echinacea. But do proceed with caution or try other herbs instead if you are unsure.

Ruined by vegetarian diet and fasting

I strengthened my cooking skills and ability to nourish myself. I was really into whole foods and slow foods. OMG things were do different then…I would buy my weeks worth of groceries from the co-op for $25. When was the last time you could buy a weeks worth of organic food for $25!!!

MISTAKES I made some harsh mistakes though. I had a vegetarian time after I was traumatized by PETA and Moby. I would also fast one day a week, because I read that it was therapeutic for joint pain. However, these were NOT good for my blood sugar AT ALL. I truly believe this caused me to fly out of my body into the spirit realms.

Think about it…people literally fast and eat plant based for spiritual purposes. Think of Buddhist monks, and the holy anorexics (a group of nuns who would fast and levitate and talk to Jesus). Although I do NOT believe you have to eat a certain way to be spiritual, I do respect it as a part of other’s religious practices.

I have been severely anemic for as long as I can remember. Lyme eats collagen. Bartonella infects the CD 34 cells in your bone marrow which are the progenitors to blood and lymphocytes. I NEED MEAT more than the average person.

When I was 30 ish I had wasting Lyme symptoms…eating 3700 calories a day, down 15 pound past my lowest weight, which is way too low for me. I tend to be catabolic and need a lot of nutrients.

sleep paralysis my soul is leaving my body meme

Set up for the Lyme flare

I think that all of these things that I was doing to improve my health along with the vegetarian diet and fasting set me up for a flare. I see it now clearly, when I get my immune system in gear, it can start to have a little ooomph to mobilize and kill some bacteria.

But with the yeast mixed in there, I was in absolutely no state to kick bacteria’s ass because I was SOOOO inflammatory with high detox load.

Thanks for reading

I am going to end this video at the end of the sleep paralysis, that lasted until December.

In the next blog/video (Pt 3 below), I talk about how I had a major insomnia flare, had palpitations and became chemically sensitive.

Thanks for listening, and if you are on a Lyme, co-infection journey, I wish you the best.

Pt 1. How I got Lyme, Bartonella and Mycoplasma; my first symptoms
Pt 2. This entry 🙂
Pt 3. Cytokine insomnia, palpitations, chemical sensitivity
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: sleep paralysis, systemic yeast, and PAIN when I was 20