How has Lyme disease affected your life? What inspires you?
Lyme. An indescribable, sadistic checkmate. I, like all of you, fell like a pawn. For me, I can only now see the gifts my illness revealed. I may be in a different place than many of you… further down the road… in relief from the worst of the symptoms. But not for lack of severity. I was dying. A plain fact. The gifts I’ve finally come to recognize: an unbelievably thorough analysis of my body status, genetic, nutritional, toxic, infectious, and energetic, psychological. Experiences and realities that plagued me my entire life were finally explained. Genetic predisposition has affected my hormones, neurotransmitter status, subsequently my energy and mood levels and reactivity, for decades, priming me to be ripe for the Lyme induced PTSD that I’ve experienced. Add in the fact that I am an HSP empath, and you can imagine the damage I’ve sustained. Never would I have the understanding that I have now of who I am, if not for this “gift” of absolute misery. Yes, I was utterly failed by standard medicine, for over 4 years. My time and safety were sacrificed by my PCP. Somehow, clearly by divine grace, I advocated and dug deep, deep, deeper and found solutions. I found puzzle pieces that layer by stinky onion layer, I’ve slowly put together, peeling myself out of this living night terror.
My acute range has been 2012-2017, with lingering symptoms up to present day. I was properly diagnosed in early 2016. I think it’s very important for sufferers to know that there are some of us who are finding our way, albeit at glacial speed, out of this darkness. How many tales of suffering can you read, when you’re already miserable? What message, or more importantly, what vibrational level are they conveying that you may not be resistant to? Yes, we do need others to relate to, but we really, desperately need others who have walked our walk and are now successfully clawing their way up the face of this cliff, joining the land of the living. Notice, I didn’t say “returning” to the land of the living. No, dear sufferer… you may live again, but never as you once did. You are forever a new person; a survivor, a warrior, an attuned conscientious piece of this incredible divine field we travel through commonly referred to as the cosmos. It’s time for you to go through the recovery process… it’s multi-layered, long, uncomfortable for sure, and seemingly never ending. There is no silver bullet. You must do it all; knock down pathogens, build immunity, clear lymph and toxins, eat spotless, ground, and supplement based on labs so you are genetically dosing with accuracy for methylation. And near the end, when you are about to give up because you still get low-low down on the bad days, and just can’t figure out how you could possibly still feel so awful, you will finally… and only then… be ready to heal your mind and spirit through energy healing. You will need guidance on how to truly clear your energetic house of a body, so just plan on it. Namaste.
“Arise, shine for your light has come, and the glory of the Lord rises upon you.” —Isaiah 60:1
How has Lyme disease affected your life? What inspires you?
This journey has been going on for over twenty years. Even before that the disease showed signs that were mysterious. I have been infected multiple times starting when I was a child. I am going to tell you my Lyme story. Pardon if a word is missing or is spelled wrong – that is my Lyme brain. I used to have the ability to write fluently and accurately. I am stepping off a cliff to see if I can fly by writing my story.
I was born in California. Nature was my wonderland. Thanks to my parents, I had a need to explore the bend in the path. My grandparents took me in a camper all over the Western states from age four to thirteen. Such magical moments, such joyous memories of old growth forests and endless desserts. My parents split, and at ten years old, I was on both coasts. New horizons opened up; New York City, Canada, Newfoundland, the East Coasts states.
I suspect I was first infected in Santa Ynez Valley while we were visiting friends that lived on a ranch. My dad was there to hunt ducks and quail. I spent my time running around the barn, and the creek with the other kids. I remember a small tick on my forehead, and my dad put a lit match on it so it would crawl out. The plan didn’t work and my dad had to yank it out. *It is shown that this makes the tick spew out it’s saliva in a way that increases your chances of transmission, only affective removal technique is with tweezers.
Santa Barbara was home. My best friend Lindy and I couldn’t resist a tree to climb up (we are still friends 54 years later). We shared a silent communication. We walked along paths in the mountains, running down the same paths. Collecting lizards and tadpoles. And ticks. Into high school we hiked the same paths into the mountains to falls and pools where we could see out over the ocean to the Channel Islands.
Part of the summers were spent on the East Coast – New Jersey, New England, Canada and Newfoundland. Bicycling down gravel roads to rivers; laying down on the grassy banks. Exploring forests with friends. The white tail deer danced through the open meadows. Prime tick season and locale.
I periodically had high fevers throughout my childhood. I had chronic bronchitis and strep throat. I remember walking to school in a daze and coughing like a seal because my stepmother deemed I was well enough to go to school. No one took me to the doctor.
Sports – I was up for anything. Waterskiing, skiing, ocean swimming, riding horses. I was always athletic but not a shining star on the field, the gym, nor in the pool; I liked that way. I intentionally came in second. In high school I ran track – the mile and the two mile. In college I ran distance for fun, and I started having trouble with my knees to the point that I couldn’t run anymore. So I took up road biking.
Studio art was my major, and design was my bread and butter. I put myself through college with almost no debt. I worked as a Waitress, an Art Director for the school newspaper, and a Bookkeeper. After graduation I moved to San Francisco with the ambition to become an Art Director. I would relax by climbing to Sutro Towers from Noe Valley or riding my bike to the Marin Headlands. I had a few raging fevers that lasted for a week to three weeks. I started getting pain in the balls of my feet. I achieved my goal of becoming an Art Director for a major retail chain.
Then I moved to Marin, got married, and started getting pregnant with multiple miscarriages. I was still strong – we mountain biked up Mt Tam every weekend, we water-skied, we snow skied, we scuba dived, and I hiked along the Miwok trail. I finally got the first trimester with my daughter with complications. The second trimester was a breeze, the third not so much. I was put on bed rest because I was going into hard labor at 26 weeks. I was so exhausted it wasn’t difficult to stay in bed. I managed to keep her inside of me until the 37th week.
Arielle was a beautiful baby – petite, alert and loving. But she was very sensitive and needed to be held constantly. I suffered from postpartum depression – back then it wasn’t recognized as a real thing. I had trouble getting back to my routine – I was so exhausted. We wanted a second baby as soon as possible. Multiple miscarriages happened again for three years.
I took Arielle to New Jersey when she was 18 months old during the summertime. My mother and I took a walk in a field. My mother came down with Lyme disease – fortunately she was on the East Coast. They treated her quickly. I didn’t even consider that I might have it too. When Arielle turned two, my favorite uncle passed away from cancer. At the time I was three months pregnant. The baby died at four months – I had to go through full labor. I was never the same after that.
I tried to hide my illness from my family and my friends. I got up in the morning to attend to Arielle and I was back in bed by ten. I was running low grade fevers. Arielle was such a sweet angel – she played beside me and I read her stories. By four I sprang out of bed, cleaned the house, and made dinner for fear that my husband would think bad of me. Three months into this my feet were too painful to walk normally, my elbows hurt when I drove, and my hands were shaking. I saw a doctor, and she said I was depressed without taking any labs. Of course I was depressed about being sick! I saw a rheumatologist and she diagnosed me with RA, Sjogrens and fibromyalgia despite the labs didn’t show any evidence that I had RA or Sjogrens.
The best thing I did was to work with a body worker to get over the immense fear of not knowing what was going on with me. I started to visualize again (a form of meditation). After a year of being terribly sick I started to get my life back.
Happy day! I was pregnant with my son – the same route as the pregnancy with my daughter. Josh was a handsome healthy heavy baby. He was not fat – he was solid. He was strong, alert and funny. I couldn’t believe such a tiny baby could have a sense of humor. As soon as my son was born I had a desire to have a third child. My doctor said no more children – he was relieved that both my children were safe and healthy. This time around I had no depression, but it was even harder to recover from the pregnancy.
I always tell my children that I kiss the air that they breathe.
When my son was nine months old, I went down to see a rheumatologist in LA who was treating RA with antibiotics. He had a 15% success rate (maybe they were Lyme patients) but I wasn’t having progress on the RA medications. He told me that I had only fibromyalgia. I was so disappointed. I knew that I had something more than that.
I still tried to keep in shape. I worked with a trainer for two to six months and I collapsed. As soon as I was able to get out of bed I went back to training. I tried Bikram yoga – I loved it. Finally after three years of doing it I couldn’t do it anymore. I substituted short hikes in the Sierras and walks with my dog to the lake. Eli, a golden retriever rescue dog, loved to swim and I swam along with him.
I tried to keep my friendships. I canceled at the last minute too many times and I didn’t have the energy to even call the doctor let alone friends. One by one friendships withered away.
The years went on. Doctor after doctor, labs after labs. Labs showed different things – one time I had RA, one time I had Lupus, and on and on. You know that look, when they are not taking you seriously. I was having left chest pains – they did nothing. I was hospitalized because I was going numb to the point that I stopped breathing and the labs showed nothing.
Sure they tested me for Lyme disease using one test. Over and over again it showed up incomplete. No doctor was diagnosing me clinically. I finally gave up. I had a SPECT scan of my brain because I got a concussion and I was noticing that I had memory problems. The SPECT showed diffuse little white dots. And an MRI scan showed the same thing. They said that it may be toxins, and it may be MS.
I continually adapted my life to my ever diminishing abilities. I had to quit art directing to get pregnant. I opened a daycare/preschool between my kids. When I got pregnant with Josh I had to stop that too. I helped my husband in his ventures by doing product design, set design, hair and makeup, writing and editing. I also went back to school to learn interior design. I was involved in remodels and new builds. Until I couldn’t do that anymore.
My children are very bright. I am happy to say that they are flourishing. Arielle was on the dean’s list, and Josh was graduating University. Arielle is the owner of a wedding planning business. Arielle married Nick in October 2018. Arielle’s first new home. Josh first job Underwriting Analyst. My grandpuppy Carter Australian Terrier I love him. Carter’s daddy Josh.
It took a toll on my ability to parent. I was a super mommy until I wasn’t able to do it. And my husband was disgusted with me. When Arielle was seven and Josh was four, my world shattered. I found out about my husband’s activities and it broke my reality. I tried for two years to keep my family together and it took a toll on my health. For months I couldn’t get out of bed. I had asthma, I had bronchitis, I had pneumonia, I had mono. I realized that if I stayed in the marriage I was going to die.
Adjusting to single motherhood wasn’t easy. I had terrible guilt for my children, and they were going through difficulties adjusting to the divorce. I felt like I was separated from the world by a thin curtain. After an attempt at a full time job, and after the death of a close friend, Richard Carlson, I realized that I should go back to back to school and earn my MA in psychology. And I did.
The plan was to get my MA and get licensed as a MFT and start teaching. I loved to discuss things with the class and my professor said I should go for my PhD. I was constantly grateful for the privilege to be in school. My cohorts and I practiced our new therapy skills on each other. I discovered that I have a talent for art therapy and play therapy.
During the second year of graduate school, I had a strange thing happen to me. I was sitting in class and we were having a group discussion. It was my turn to speak – the room turned gray and I was trying to get my words out. My classmates had a puzzled look on their faces. They reported that my words were soft spoken, slow and garbled. That was the first day that my ability to speak started to go.
I went to the doctor once again and he set up a four minute appointment with a neurologist. At that time, my voice faltered intermittently. She said there was nothing wrong with me. How about a stroke? You would think that they would have at least checked that. Then my COBRA ended and I went without insurance for two years.
After graduation I started interning at a private clinic. I was responsible for running women’s groups, and co-facilitating group presentations. A year into the internship I could no longer do the presentations because my voice wasn’t strong enough. I joined another private practice where I didn’t have to do groups and it provided insurance. I was looking forward to getting my license. The work was so fulfilling, I felt it was my calling. Increasingly I was sick; my voice was faltering. I felt lightheaded. My clients were so bonded to me, they didn’t mind that I had to repeat myself sometimes.
By September 2013 I was seen by an ALS specialist. I didn’t have ALS. Sutter Hospital’s neurologist diagnosed me with PPAOS (Primary Progressive Apraxia of Speech). For which there is no treatment. I would have lost my voice entirely, 154 IQ 2002, 95 IQ 2013, my reading ability, mild Parkinson’s and die. That didn’t explain the physical symptoms. Slow death.
By October 2013 I was rushed to hospital for a heart event. Possible TIAs. There was another hospital stay for the same thing in February 2014. They did a full work up on my heart. My heart is structurally fine. The cardiologist looked at me in that way – you know the look. Now when my blood pressure plummets, I get pain in my left chest, arrhythmias, tachycardia, I don’t go to the ER.
They didn’t consider that my autonomic nervous system was under attack. I had to retire as a therapist because I couldn’t communicate with my clients and I couldn’t drive reliably without the danger of another heart event. It was so hard to accept that. I questioned God – I thought I was serving him by being an instrument of healing.
Finally the angels directed me to a Lyme support group. That first meeting they gave us a LL(Lyme Literate) doctor’s name that handles complicated cases of Lyme Disease. I went to San Francisco for my initial session and to get the special labs drawn. I stayed in the city for four days because that’s how long it took to draw the proper labs. Needless to say I am positive for Lyme Disease, Bartonella, Babesia, EBV and Fifths Disease (a virus).
My friend Karen has hung in there with me. When I am around her I feel her happy loving energy running through me.
My mother has been very supportive – exceedingly so. I don’t where I would be without her. It is so wonderful to have a parent that steps up and gets it. It truly makes me healthier with all the love around me.
I was sliding backwards. I hadn’t received IV treatment for a month at Sutter Roseville because Sutter changed my diagnosis from: bacteria infection, encephalopathy; to Lyme Disease. As Sutter follows the CDC corrupt guidelines; they refused to treat me. My gallbladder was removed. I am on a no sugar, no gluten, no dairy, healthy fats, ancient grains, veggies, berries, and nuts diet. I take lots of supplements, essential oils, and probiotics. I started Stephen Buhner’s protocol. I went to Peru in 2016 in a wheelchair. Two months in the Andes walking. 30 lbs low – Kambo, Wachuma, Ayahuasca, body energy, stress life free, world healing masters, healing journey. Four months May – August. Pisac Sacred Valley. Rachel rescued a poor puppy. Danu – Celtic Fairy goddess. I was in Danu, USA. I was fostering her. Unfortunately in October 2016 Granite Bay California, a feral kitten bit my left hand from being rescued on the road. Acute Bartonella with a red swollen hand. Six months bedridden. I was working with a master herbalist/acupuncturist in Nevada City energy health. Divorced second ex-husband Scott after being four years married. I moved from California to New Jersey in November 2017. I joined my mom and family. Bedridden, heart problems (bradycardia, tachycardia), I had trouble swallowing liquid and pills, I had trouble with handwriting, I had trouble facial expressions – no smile, unbalanced, mild Parkinson’s, and lost weight to 109lb.
My days were spent on the couch with my doggies. My golden retriever Samson and Matshi mix Delilah. Sometimes I couldn’t walk into the kitchen, and other days I could go out for one errand. On days like this my brain is soooo slow; it takes me time to figure out how to spell simple words and the proper syntax. Somerville is a pretty small town. My neighborhood is safe and friendly. My neighbor’s book club – six people. My friend/neighbor Mary died in June 2019 of pancreatic cancer. Her husband and two daughters have grievances. I miss her.
Most of the time I am peaceful, I have gone through grief, I have accepted what is. Sometimes I battle with the dialogue in my head that tells me I am lazy. I mostly numb out my body, and I have done that for years. When that voice starts rearing its ugly head, I tune into my body. I am always surprised how sick I am, and how much pain I am in. I am continually surprised when I can’t speak one word. I have trouble with facial expressions. I can’t bear the look on people’s faces. Many people think I am rude and angry. They are so shocked because I look relatively healthy. I am just glad I am breathing.
I am contemplating starting a Lyme support group in my town because two other groups in my area are too far away, and one is at night. On my good days I think I can do it, today I doubt I can do it. The best thing about my blog is I am connecting with other Lyme Warriors in a safe way across the world.
I am hoping to connect with people in a deep and meaningful way…
How has Lyme disease affected your life? What inspires you?
I was diagnosed 3 and a 1/2 years ago, and although I was on antibiotics for almost 3 months, everything got worse. My entire life has changed drastically before me and no one can seem to help me. Doctors look at me like I’m making my symptoms up, I can’t keep a job because I’m always in pain, my entire body aches all day, the memory fog is getting worse; I’m forgetful. I mess up drastically when writing. I barely sleep, I’m frustrated all the time, I have tremors in my hands, I can’t be in the sun like I used to. I CAN’T DO ANYTHING ANYMORE!!! There’s days I can’t even move. But no one can help me. I don’t know what normal feels like anymore. My family tries to help, but it’s getting worse, and I’m getting more and more angry at myself because I don’t want to accept that this is what I will be for the rest of my life. I’m tired of my daughter seeing me in pain. I’m frustrated that my family has to watch me go through this and there’s nothing they can do! I just wish I can feel what being NORMAL feels like again!!!
“I might have Chronic Lyme Disease, but IT will never have ME.”
How has Lyme disease affected your life? What inspires you?
This Lyme disease. It impairs my speech. I forget words. Attacks my Nervous system. Paralysis of my face…Brain fog. Severe migraines that last for days. Has caused Brain lesions. Chronic fatigue…(longest slept 19 hours) my body will just shutdown. Severe pain at times. Stress trigger…sickness trigger…tired trigger…I can have some symptoms that stay for weeks, days, hours, or even moments. It just appears 😳 it’s from any kind of bug. Blood transfusion…from mother to child. #lymediseaseawareness
Video Transcription:
It’s Saturday, April 27th. So I am having this whatever it is, where my right side is not functioning. My speech this morning has not been good, it’s a lot of stuttering today, having trouble saying words, and having a hard time trying to think of the words. I wanted to document this for when I see the doctors on Monday because I don’t how my speech will be Monday, so as you can see my face, my mouth is sometimes functioning correctly and not moving to the left side, and sometimes it’s not, it’s the weirdest thing. Okay, I’ll keep you posted throughout the day, because every minute, it changes. Bye!
Video Transcription:
Well today is April 28th, and as you can see my speech is good, my mouth is functioning. It’s been a good and a bad day, the speech was horrible this morning. Migraines—a lot of migraines most of the day on and off. I did get a lot of…I rested pretty good today. If I get enough sleep, it seems to help my speech. We’ll see how tomorrow goes, that’s it!
How has Lyme disease affected your life? What inspires you?
I just want to feel human again. I feel like a shell of the person I once was. It’s not just energy, or the lack thereof, but a loss of emotion. ~Journal entry 11/9/17
Lyme Disease Awareness Month
In honor of Lyme Disease Awareness Month, I will write a series of posts that share honest insights of my Lyme disease treatment. My hope is to offer enlightenment as to the true severity of this disease and its treatment. For the two months that I stumbled around the dark chasm of Samento and Banderol I felt alone, vulnerable and dissociated from the world. I hope by sharing these truths, others won’t feel so frightened of the scary things going on in their minds and their bodies. Remember, though you may feel alone in this, you’re not alone. Others have walked, or are still walking, a similar path. I hope you can find some peace in our shared experiences.
Entering the abyss
I didn’t fully realize on the morning of October 5, 2017, that I had taken my first steps into the dark chasm of Samento and Banderol. My journal entries from those two months serve as my memory. The reality of the sensory deprivation that surrounded me like a veil reveals itself in my entries from those lonely days. As I walked around like a stoned corpse, my mind was swallowed by illusion. For two months I floated, helplessly, in that sea of delusion.
On October 4, 2017, I took my first drops of Samento and Banderol. The day before my doctor had warned my husband to watch for brain herxing, such as cognitive issues and depression. However, it was hard for him to fully gauge my mind’s rapid slide into the chasm of these two seemingly innocuous herbal extracts:
I ran to the grocery store today and nearly got into two car accidents along the all too familiar route. I felt completely out of it, like I was super stoned. The world around me felt like it was moving at hyper-speed while I was moving in slow motion. While I was pulling out of the grocery store I nearly collided with another car. I didn’t even see him there. I’m not sure I even looked before pulling out. It’s like I was the only person in the world and then suddenly I wasn’t. My mental dissociation is alarming. If I could feel scared about this development, I probably would be. I don’t think I should be driving.
October 10
~So tired yesterday, took 2 naps. Increased dose this a.m. to 3 drops, feel weird already. Left foot numbness, wobbly, disconnected from my body.~
It feels like my head isn’t attached to my body. I have very little control over my legs. They wobble around like they have a mind of their own, completely separate from the commands of my brain. Through it all, I feel surprisingly comfortable in my delirium.
October 13
~Increase to 4 drops. So far, feel a bit out of it. Hard to concentrate, dizzy, and of course tired. Feel nervous. Kind of difficult to walk. Feel jell-o-ie, out of breath. Pain in left rib/breast continues. Left foot weird still. Cut back to 3 drops tonight, 4 drops this a.m. really fucked me up.~
My husband was speaking to me as he cooked me breakfast this morning. I couldn’t concentrate on what he was saying. I’m certain he was speaking English, as that is the only language he speaks, but he could have been speaking Mandarin for all that I comprehended of his words. When it was my turn to talk I opened my mouth, but no words came out. I’m certain I had thoughts but I was unable to speak them. My mouth moved like a fish as it swims along, absorbing oxygen from the water, and my words were released and carried away with the carbon dioxide.
October 18
~Feel weird…woke up with wet clothes, night sweats. Hard to focus, to talk. Catching my breath while walking. Headache again. Chest pain.~
I have to take Ollie for a walk. After I attach his leash I have to remember to grab the string attached to my head so I can carry it along with us. I draw a smiley face on it for the sake of congeniality, as it floats and bounces about, above the rest of my body. I wish the dissociation would reach my body. At least then I would be less aware of the heat that pounds on my body like a sudden heart attack.
October 19
~Slept good. Feel lost this morning, like I’m stoned, forgetful. Tinnitus, achy, tired. Hot flashes, headache, pain behind left eye. Difficulty swallowing.~
I’ve just stood up from the comfort of my brown recliner. I search about the room, looking for clues as to why I decided to stand up. Did I hear something? Am I thirsty? Does Ollie need to go out again? Do I need to go pee…aaah, yes that’s it. I need to go to the bathroom. I wonder, if I hadn’t had the inclination to stand up, might I have wet myself? That would be embarrassing. I need to remember to get some more water before I sit back down. I am thirsty as well. Get water, you’re thirsty. Don’t forget water, you’re thirsty. Get water, you’re thirsty. Aaah, back in the comfort of my brown chair. Aw, shit. I forgot to get more water…
October 22
~My brain feels weird. I feel oddly numb yet super sensitive all at the same time. I feel like my mind is a rogue agent right now. And, through it all, I am almost oblivious to it. It’s all very strange. Will is gone hunting right now, left two days ago…and I don’t miss him! This is not because I don’t miss him, it’s because I don’t really realize he’s gone. It’s like I’m stuck in some bizarre alternative reality… and unaware I’m stuck in it. The saying “ignorance is bliss” has never held more reality for me than now.~
This journal entry has always been the most telling, and the most eerie, of my recollections. I remember feeling this sort of elation in my ignorance of what was going on around me. Mostly, I really was rather comfortable in my delirium. I’m not sure if I should have been scared by this or not. All I know is that after I finished with this disarming protocol I was able to speak again and remember words again. It didn’t all come back at once, but my brain was on its way out of dis-ease into a place of ease. After the dark chasm of Samento and Banderol, the fog that followed me everywhere gradually began to wane.
The shell of a human
“I feel like the shell of a human.” This phrase comes up in my journal over and over throughout my treatment. For the two months that I took Samento and Banderol I lived in a constant state of nothingness. I was an androgynous avatar of myself, swaying in blackness, waiting for someone to select me and breath awareness into my eyes.
In my book, the title of the chapter where I discuss my journey through the chasm of Samento and Banderol is Brain-Fucked. That is a crass but all too true description of how I felt at the time. My consciousness was altered in a way that I had never experienced before or since.
If you find yourself swimming in the Sea of Fog, reach out your hand and know that you’re not alone. You’ll find your way back to shore. And when you do, things will be so much clearer. The sun will shine brightly on your face again.
Follow this Lyme warrior’s blog; United By Lyme and purchase her memoir here.
My name is Stef, I’ve had Lyme disease for 7 years now, after a strange rash (that I thankfully photographed and now know is an EM rash) was misdiagnosed as ringworm in 2015. Over the years I kept getting sick, but the things were so disconnected.. debilitating days—long migraines with visual effects, tachycardia and heart palpitations, energy crashes and a thyroid attacking itself—were the first symptoms that popped up down the line in 2016, my first year of university. My doctor dealt with each issue separately and it was all unknown as to the cause. Then in my second year, my body just betrayed me, with debilitating fatigue and chronic pain, periods gone completely and neurological bits and bobs like tremors, brain fog and memory loss and eventually seizures. I just about finished my second year and just as I was starting my third year, I had a 2-hour seizure in Paddington station. I was diagnosed with M.E., Fibromyalgia, Non Epileptic Attack Disorder and Functional Neurological Disorder. I had to fight with doctors who dismissed me and learned a lot about patient advocacy.
I had to move home to be cared for, as I could no longer look after myself, which broke my heart. Piecing the symptoms together with my medical history, I came across the rash picture which, along with my symptoms was enough for a GP to consider Lyme Disease and start me on a course of Doxycycline immediately. The relief was immense. All seemed well until I would finish the course and everything would start up again. My pain was hefty and my seizures were daily. My GP kept me on Doxycycline for longer and longer periods, but I would always relapse. We had no idea what to do, infectious disease doctors said I should be cured, but I kept going in circles.
Lyme Disease UK organized a talk with Dr. Jemsek in London, which I attended with my mum and uncle, he was at the top of my list of international specialists treating people like me. I asked about my case and took as many notes of recommendations as I could to my GP. We started me on some stabilization medications for my nervous system and I started fundraising to see Dr. Jemsek in America for specialist treatment.
I’ve been in treatment for 3 years now and am grateful for my progress everyday. I can read again! When you lose the ability to read, as someone who loves learning, it’s devastating so I’m most grateful for that. I haven’t had a seizure in 2 years! My pain is under control besides suspected Endometriosis (I’m on a waiting list for a specialist to investigate that), and my fatigue is better than it was by a long mile. I have a carer who helps me live a bit more independently, with the tolls of treatment and all the detoxing I have to do. I’ve learned a lot through the wider disability community online and have unlearned so much toxic internalized ableism. You have to grieve the loss of your old self and I’ve managed that really well, I just focus on who I am today. Every year I try to get involved with Lyme Disease Awareness online, but I’ve always been too sick to manage making a difference in my community in person (besides my fundraiser in 2019 which doubled as an awareness event). This year I’m finally able to do some things locally and help more people avoid having to go through what I’ve been through.
I believe in the power of education and activism, I believe in the power of mutual aid and I believe in the power of marginalized communities. Today I work on learning sociology, philosophy and getting back to my practice of textile design. I’m still in treatment and have some way to go, but I’ve come such a long way. I love going outdoors in nature in my power chair (mobility aids are freedom) and spending time with my partner. It’s been a hard few years but I enjoy what I can, when I can.
My advice is listen to your body and work with it, not against it. Not everything will work for everyone. If something a doctor suggests is harming you or not working for you, you are allowed to say so. Also keep notes of everything, even if it’s in the form of videos, just to look back on and see how far you’ve come, sometimes you need that reminder.
What inspires you?
philosophy. sociology. the power of a collective. mutual aid. forests. communities helping each other. solidarity. activism. Not one quote in particular but I’m a fan of Bell Hooks, Noam Chomsky and Albert Camus to name a few who inspire me.
Hang in there, Stef xxxxxxx
If you can, please donate or share Stef’s GoFundMe here. to help them travel from the UK to Washington, DC for their next doctor’s appointment and raise funds for Lyme Disease UK.
How has Lyme disease affected your life? What inspires you?
Seven years ago I was a runner, but I found myself slowly unable to have the stamina to run anymore. I found myself sleeping as soon as I got home from work and never able to get enough rest. When I started having neurological system and extreme fatigue, I knew something was very wrong. After a few disappointing experiences with unqualified doctors, I finally found one who discovered I had Lyme (which also reactivated Epstein Barr). I went through 5 months of intense Eastern Medicine treatment and am now in remission. Despite dealing with some neurological damage that is not reversible and my stamina not what it used to be, I am so grateful to be better than I was thanks to a knowledgeable holistic eastern medicine doctor.
What has helped me with my journey? Pacing myself, not comparing myself to others and to listen to my body and give it what it needs. I also try to allow extra buffer time to any project or deadline.
Check out Belle’s all things quilty website here and Etsy here. She offers patterns, training and video tutorials!
How has Lyme disease affected your life? What inspires you?
My name is Tiana, I am 25 years old and I live in Belgium (Europe).
In the late summer of 2019 I became very ill. I kept losing weight without knowing why.
I had severe muscle weakness and was always super tired, I slept so much but the tiredness didn’t go away.
I went to several doctors and hospitals and nobody knew what was going on.
They misdiagnosed me with many different things like IBD, Crohn’s disease, Fibromyalgia, Chronic Fatigue Syndrome, MS, ME, even cancer, mental health issues and so on. They even said I made it all up and it was in my head.
I knew something was very wrong with me, it was scary and frustrating not knowing what to do or where to go.
Years have passed and my health kept getting worse, until I had to quit my job and slept for more than 16 hours a day. Some periods I didn’t get out of bed at all.
Every single part of my body is affected—from my muscles, joints, stomach, to my heart and even my brain. I can’t function anymore.
In 2020 I tested positive several times for Lyme disease, but not a single doctor took it seriously and they dismissed my symptoms.
I vaguely remembered having a weird rash on my forearm, I scrolled through my pictures on my phone and came across the bullseye rash, dated May 2019.
I did see my family doctor for this at the time, but he said it was only an allergic reaction to a mosquito bite. Little did we know… I didn’t recall seeing a tick.
I saw over 20 doctors, in 5 different hospitals, but nobody believed in Lyme disease, even with my picture of the rash and my positive test results. I was desperate as I kept getting sicker and sicker. I felt really lonely in this experience. Even my family doubted my symptoms; if so many doctors say nothing is wrong and your labs are normal, then why should something be wrong? Aren’t you just stressed? Maybe you should see a Psychiatrist? I did not know what to do, what to say, I was so sad that nobody believed me, or took me seriously.
It was only in December 2021 that I found my way to an ILADS specialist. He ran multiple tests and in March 2022 I was finally diagnosed with Chronic Lyme disease, as well as Epstein Barr virus, Babesia and Tularemia. I finally know that it’s not in my head and last week I started my treatment. The doctor is hopeful, in terms of Lyme disease, 3 years is ‘quick’ he said, and it is possible that I can get my health back the way I did before I got bitten. So I cross my fingers and hope for the best!
I was working the grand opening for a brand new gym that had opened at the time, which was my home of work for several years. I was a fitness trainer working at the time. (I’ve been a personal fitness trainer and group ex. instructor for over 14 years now) I was always energetic, full of energy, and just extremely overall absolutely in love with what I did. (Helping people look good, feel great, and achieve their personal goals of weight loss) Weight loss was my specialty, because I always wanted to help others the same way I helped myself. (I grew up in my younger days overweight and completely out of shape) But that’s a whole other story we’ll save for another time. Anyways…Due to the fact that it was a brand new gym with many construction workers onsite all the time it was very common for them to be constantly bringing in insects such as ticks and spiders. I think you can see where I’m going with this. Yep you guessed it, I got bit at the new gym facility, which at the time was my work place. I wish I had some super cool adventurous story for you guys, like I was hiking in the rocky mountains but I don’t. It was just an unfortunate situation and I did not receive the proper treatment on time. Therefore my situation became chronic.
The Day of the Bite and My Plan of Action Immediately…. (May 30th, 2014)
After itching and itching profusely at my right leg, hours later which I had assumed at the time was just a simple mosquito bite, I lifted up my pant leg and saw a huge rash with a big red ring around (the standard Lyme Disease bullseye rash) with tinges of black and blue with purple hues and LOTS of redness. I remember thinking, “eh whatever I’m sure this is just a bad bug bite. I’ll get proper treatment and be fine, right??” Nope wrong… After my entire family insisted that I seek medical attention (because it looked that bad) I finally went to the nearest Immediate Care. It was a Friday night and I didn’t really have a choice. All other Doctors were gone for the day already.
My Diagnosis for That Day of the Bite…
I was then told that my bite was indeed infected by a poisonous spider bite (the one and only brown recluse). Lyme Disease was not brought up or mentioned at all, even though I had the standard signature rash for it. They treated me with a topical antibiotic gel and an oral antibiotic, Batrim for 10 days (which was a nightmare in itself). So where am I going with this? The standard antibiotic treatment for Lyme is Doxycycline. Studies show that when given the proper treatment with the proper antibiotics within 72 hours of getting bit, this horrible disease will in fact NOT become chronic or officially enter the bloodstream permanently. So like I said, just a very unfortunate situation. And which I’m still working on truly accepting and it’s years later. What they were too quick to assume is that because it wasn’t a tick bite and it was a spider bite, perhaps they didn’t think about it or were just completely unaware. Studies show that you can get infected with Lyme by any insect that carries the Lyme bacteria. (Which we will definitely dive deeper into later).
Let’s move on shall we. So from there, to be honest I didn’t know any better at the time. I didn’t know what Lyme disease was, I didn’t know about the standard rash, and I had no clue about any type of treatments for bug bites. I mean why would I? So I did what anyone would do. I followed the doctor’s orders. I took the Bactrim and have never been sicker from an antibiotic before in my life. It consisted of complete bed rest with zero energy and MAJOR fatigue with other flu-like symptoms. It was absolutely terrible. But I finished all 10 days like a good girl, thinking that it would all be over soon. I did what I was told so I’ll be better in no time! Right?? Nope again very wrong actually. I had no idea that this was only the beginning of a living nightmare. It had only just begun.
When All the Symptoms Started…
Within time my body slowly started developing more and more symptoms, and eventually every major body system felt like it was being attacked.
I remember running outside, conditioning for the 15k hot chocolate run at the time, or trying I should say, and my body just physically wouldn’t go, that’s the only way I know how to describe it. I was always used to being a long distance runner and athlete. I was a trainer, I ran half marathons for fun. I worked out every day for 1-2 hours at a high intensity, no problem at all. That’s when I knew something was significantly wrong. When I couldn’t do it. I had all the drive and motivation it took, but my body just wouldn’t physically work any more. I told my mom I don’t know what’s wrong with me, but ever since I got bit by that damn bug I haven’t felt the same…
Touch of Health with Dr. Zishan Alam…
That’s when all the doctor’s appointments and blood work labs started. I was on a mission to try my best to figure out what was wrong with me…I was recommended by a good friend to go see Dr. Alam, an Integrative Homeopathic DO who is absolutely brilliant and whom I still get treated by and see every 3-4 months to monitor the core of my overall wellbeing including; thyroid, hormone, and adrenal issues. That’s when I then received my first diagnosis with Hypothyroidism and adrenal issues. I had no idea where these issues suddenly came from. It doesn’t run in my family and this was never a problem for me. So where was it coming from?? At the time, I had no clue. But now I can say after years of research and being in the know I can tell you!
What Lyme First Attacked in My Body…
The first thing that Lyme usually attacks is the endocrine system. Which in lack of better words, just plain sucks since it controls literally everything in your body. So you see, Lyme disease put me into Hypothyroidism. That’s the first major system it attacked, for me anyways. After being put on thyroid medication, supplements for my adrenals, and other helpful vitamins at the time, it was a small temporary fix just in time to allow my body to do my hot chocolate 15k run. I was so happy! I thought I was fixed! I thought we had solved the problem…The reality? It was only a needle in a haystack being taken care of. And I had no idea. I also had no idea that that would be my last long distance run (for now anyways).
All Major Symptoms…
Within time my body slowly started suffering from more and more symptoms, and every other major body system felt like it was being attacked. Starting with major fatigue, muscle and joint pain, which then eventually went into many neurological symptoms—starting with intense vertigo, dizziness, lightheadedness, muscle spasms, numbness and tingling in the hands and feet, insomnia, anxiety, panic attacks, severe weakness in the legs, fire feeling sensations in the entire body (nerve pain), brain fog and confusion, ear issues like tinnitus, intense pressure in the ears and head (that was the worst for me, the severe head pressure), and much more. Vision problems including; floaters, sensitivity to light, etc. I thought I was dying. No joke.
After realizing it was a bit more than thyroid issues, my mission got longer and longer with lots of frustration, blood, sweat, and tears, not to mention lots of pain and tons of discomfort filled with every kind of emotion you can possibly think of. But to sum it all up I was completely terrified. The most difficult part was trying to get a diagnosis. It was Doctor after Doctor, specialist after specialist, numerous extensive tests, blood work labs, allergy testing, MRIs, CT scans, ultrasounds, GI procedures, Pulmonary testing, Neuro testing, countless ER visits… you name it. No one could figure out what was wrong with me. I felt like I was living in one of those dreams where you’re screaming at the top of your lungs, begging for help, and people are in the room right next to you but NO ONE IS LISTENING! It was absolutely earth shattering. I think the worst part besides all the pain, was that at one point for a split second the doctors even started to convince you and your family that you’re crazy.That you’re fine. Nothing is wrong with you. (Mainly because they have no idea and can’t figure it out) When in fact no one knows your body the way you do!!! No one!!! I knew for a fact that something was significantly wrong when my legs had an extreme weakness in them and were losing feeling. As in I couldn’t walk comfortably, or walk up and down stairs. They felt as if they just didn’t know how to work anymore. It was the scariest feeling in my entire life. After hearing my poor mother’s voice day after day with extreme worry and concern she inspired me to push through, and I started doing therapeutic exercises on my own at the gym. (THANKS MOM! What would I do without you? You ALWAYS remind me of my inner strength when I forget about it and most of all, when I need it the most, I LOVE YOU!)… I would start with like 10 lb. leg extensions and work my way up. Before I knew it I was getting stronger and stronger with every workout. The number one thing you need when fighting an illness, and I mean the most important thing ever is, determination. If you’re fighting for your health, don’t ever ever give up!!! Dig deep from that inner voice inside and pull that shit right out of you! Lyme is something that can easily take over your entire soul if you let it. Just dig deep for that inner strength we all have, and use it.
FINALLY Getting the Diagnosis…
Anyways, 13 specialists later and going on a year with symptoms, (March 2015) I had to ask my neurologist, “PLEASE please just test me for lyme,” I begged. I have every single symptom. Just please test me for it. She said, “ok I’ll test you for lyme if that’s what you really want but I don’t think you have it.” She ran the labs and EUREKA we’ve FINALLY got a diagnosis! I was so happy that day because I finally got an answer. I had an explanation for this crazy nightmare I was living!!! Now let’s start the treatment! Let’s get better!! Let’s get the party started! Oh it was a party alright but not one anyone would want to attend that’s for sure…
Finding a LLMD to Get Proper Treatment…
First things first, when getting treatment with Lyme, you need a LLMD (Lyme literate Doctor). That’s when we found Dr. Keith Berndtson. A LLMD who ran lots and lots of labs, followed by lots and lots of supplements, holistic care, and of course a different series of antibiotic plans. In which every one was more unbearable than the next.
Everything from that point on was trial and error. Just like many other things, everybody’s body has its own special unique reaction to something different. What works for you may not work for me and vice versa. So we started with Tinidazole and Ceftin. Followed by a few more rounds of other antibiotics (Clarithromycin) that continued to make me way worse than better. Which I was warned about, as they called it the, “Herxheimer Reaction”. The pathogens come out of their dormant stage and out of the cells and into the body, basically causing a hurricane-like mess in the entire body. It is also known that herxing causes a “die off” where the Lyme is fighting back, releasing toxins and causing inflammation in the body, therefore causing all the unbearable symptoms, causing you to get much worse before getting much better. I couldn’t stand the suffering and had an extremely difficult time with this process and to be honest, wasn’t entirely sure I fully believed in this process. Luckily we found an incredible open-minded Internal medicine; Dr. Jack Zoldan, located in the city. He had a little bit of a different belief and approach, as far as the whole getting better process. He said, “I don’t believe in the herxing method. If something is making you worse, I just don’t believe it’s working for you.” To be honest, I kind of agreed. No matter how many places I read about it. That’s when we decided to change paths and get started on Doxycycline. Which I like to personally call the holy grail of antibiotics, as far as treatment for Lyme goes. And an antifungal Nystatin, which also seemed to help. Now this is just my personal story. That’s what worked for me. That doesn’t mean it will work for everyone. Lyme is a very complex disease to have. There are different infections caused by different bacteria, parasites, fungus, viruses etc., not to mention co-infections. I mean it’s A LOT!!! And every person infected has their own unique case. Which is why it’s so hard to treat.
After trying multiple antibiotics, Doxy clearly worked best for me. All together I cycled on/off for about a year straight until my body and most of all my poor digestive system just couldn’t take anymore. My GI is still a work-in-progress healing from it all, but we’ll get into that later and my recent diagnosis with SIBO (small intestinal bacterial overgrowth) along with the whole treatment plan coming soon, which I’m not looking forward to, but it’s another step in the right direction towards getting my health back, so I’m a happy girl! Like I said I have a lot to share.
January 13th, 2017 Hives…
An extremely discomforting situation of very painful hives started in 2017. Thankfully that was my first and last episode! That’s what brought me to see Dr. Lisa Sullivan, a very thorough and intelligent Allergist and Immunologist. She ran multiple tests and we couldn’t find out where exactly these terrible discomforting hives were coming from. To clear it all up included 3 ER visits, IV antihistamines, about 3-4 EPI-pens, and lots of Zyrtec. It was a living nightmare which consisted of and felt like my entire body was literally on fire mixed with extreme and unbearable itching. It was terrible. The result? I never really found out exactly where they came from. But Dr. Alam (as he pretty much always has a definitive answer or theory for anything I throw his way) stated, “The large amount of caffeine I was taking (pre-workout at the time), crashed my adrenals which led to crashing my immune system, making my histamine receptors not willing to work properly.” After researching more and more, it was confirmed of course, as always, he was right. Needless to say, I obviously don’t consume high levels of caffeine! I like to enjoy a nice cup of green tea from time to time, but that’s about it.
As time went on after all the antibiotic treatments and supplementation, I did get better. I got a lot better and I was extremely grateful for it all! But I was still suffering. I was still struggling with my new lifestyle that I had no idea how to accept. I thought if I felt better and came this far, I want to keep going. There has to be something more that I can do to get my life back to my 100% that it used to be, if not somewhat close.
Protocols at Raden Wellness Center…
That’s when I found Raden Wellness Center. I was being treated by the brilliant Dr. Donald Raden and received even more complex answers about everything going on inside my body. I learned a lot between new blood work labs such as; the Armin test, biotoxins in my body and the biotoxin pathway, and much more. Again something I can’t wait to dive deeper in with you all later. But for now I can tell you that Dr. Raden’s plan of action for getting rid of all the biotoxins was BINDERS! This was including; Chlorella, PC oil, and Tox-ease Bind. None of which I had any bad side effects from and just continued to get better from flushing all the biotoxins out! My Biotoxin units through blood work have dropped significantly and I’m currently doing MUCH BETTER in that department. So, THANK YOU Dr. Raden!! From there we had discussed more treatment plans. Unfortunately all treatments having to do with Lyme are not covered by health insurances. Which makes everything even more difficult because it is very expensive. Out of my many options including; Ozone therapy, IV treatments, Silver water, Herbal support and even more supplementation, I decided to go with Peptide Therapy Daily Injection shots that I gave myself every single day.
Later on we also decided to start IV treatments including Vitamin C drip, Glutathione push, PC, ALA, and a Myers’ Cocktail or Immune Push (all in which I alter back and forth with, and occasionally still get if I’m feeling in the need for a little tune up). I started this when COVID hit us and we wanted to just basically keep my immune system up and running nicely. Which it did! As Dr. Raden says, “Worst case scenario for Lyme patients is an immune system that isn’t working up to speed. So it’s very important that we always keep it nice and strong.” I LOVE the IV treatments for that when necessary. I always walk out of the IV center feeling like a million bucks!! I always tell the nurses there that this is my idea of a spa. Lol It really is though. Nothing beats feeling great! And the IV treatments make me feel great! But the proper amount of good sleep, exercise, a healthy diet, reducing stress and supplementation also play a very big role in keeping your immune system strong and feeling great as well. But that’s no secret. I’m sure you already know that.
My Experience with Peptide Therapy Injection Shots (Thymosin Alpha 1)…
Just like mostly every treatment with Lyme, once again I got a little worse before I got much better again. In the beginning side effects included; extreme anger for no reason, irritability, headaches, ocular migraines and over all anxiousness. After a while though, I started feeling like a million bucks. Okay maybe like a half a million bucks, Lol. With my immune system up and running much stronger from this amazing revolutionary peptide, I was sleeping like a baby, had way more energy, recovered from my workouts better, and was overall in a wonderful mood all the time because of how great I was feeling. Needless to say it was indeed working and doing its job. I continued to take Thymosin Alpha 1 for a little over a year, until I noticed it started working a little in reverse for me. Meaning less is more. I no longer needed that much of it, or at all it seemed. So I went from everyday, to every other day, to 3x a week, to 1x a week, and then I stopped. My face got a little puffy from it and I did gain weight, which tells me it was altering with my inflammation levels. Anytime you alter things with your immune system that will happen, I was told.
For a while I was extremely confident I was almost at my 100% with Lyme in remission. But when extreme stressful life events started taking place in my life, everything seemed to reactivate. The thing is, we’re not just dealing with Lyme disease and its co-infections here (in my case). We’re also dealing with biotoxins, EBV a.k.a. Chronic Fatigue Syndrome, Hypothyroidism, high cortisol levels leading to adrenal fatigue, and hormonal imbalances. So it’s basically a domino effect of the body in constant fight or flight mode, which is never a good time. But with extreme self-care, daily routines, lots of supplementation, constant detoxing, occasional IV treatments, and ALWAYS staying on my A-game with diet, exercise, yoga, and meditation, it creates that healthy balance of homeostasis in the body. So basically I have to take very special care of myself to feel good.
Healing with Whole Health Chicago…
Anyways, after my little peptide therapy journey was over I was highly recommended from friends and patients to go see Whole Health Chicago. I am currently still getting treated there and seeing Nurse Practitioner, Katie McManigal who is absolutely brilliant and I couldn’t feel more confident that I am in good hands. We are currently on a plan of action, which I am more than happy to share with you in the very near future. I will be receiving treatment for my latest diagnosis with SIBO soon, along with some more intense detoxing and a bit more Lyme treatment, while we soon bring this healing journey to an end. In her words, “Michelle, look at this year 2021, as being your year of healing”. We have quite a bit more to do but I’m so excited to be so close to the end of this crazy journey. I can’t wait to share all the details on all of that with you all. But in the meantime, I have been given some game changer supplement protocols that I would love to share! So stay tuned!
My Experience with Naltrexone…
She did prescribe me the medication Naltrexone. A medication that is supposed to be revolutionary for people with Lyme and other auto-immune diseases. Well it is actually and has been extremely successful in lots of people in these cases. But not me. I actually had an awful experience with it. It made me extremely emotional, angry, confused, and any other kind of negative emotion you can think of. With that being said, I stopped it. On my own. It’s that simple for me really. If something doesn’t make me feel good, I don’t take it. Like I said, you know your body better than anyone else. Listen to it when it speaks to you. Anyways I stopped the Naltrexone and was back to my old happy self again! ☺ (I’m pretty sure I only lasted a week of taking it.) Every single body is different, what works for you may not work for me and vice versa.
We’re Getting There…
I feel like I’m getting closer and closer to the bright light at the end of the tunnel and even though I have some ways to go, I’m so happy I’m getting closer to feeling great again. Like any other immune-suppressing disease, I have my bad days and my good. But I do my best to let go of the bad and stay extremely grateful for the good!
I have been wanting to share my story for a very very long time and I’m so happy I finally made the time to finally do it. I promised myself when I was at my worst, bedridden, and couldn’t tolerate anything more than laying down in a dark room with no lights, no TV, no sounds, just silence and extreme discomfort… that I would do my best to help anyone else who suffers from this unfortunate disease, that I would help them as much as I could and as much as I helped myself. I’m not a doctor, but I can share what worked for me, what didn’t, and all of the in between. Which is exactly what I wish I had back in the very beginning. I was looking for hope. I was looking for answers that seemed impossible to find at the time. Remember that you’re going to keep trying, and trying, and trying to reach your goals of getting your life back… and that very moment right when you wanna give up, that’s the exact moment you have to keep going,you have to keep pushing through and that’s when you finally start to succeed and get better. You will try things that won’t work for you. And you will try things that will! But please be patient and remember, that you will heal and you will get better! So I hope this inspires you in some way and helps you in another. I’m looking forward to sharing with you, all of my self-care and daily routines that help me live my everyday life on this crazy healing journey. So enjoy!! Lots of Love and Light to you ALL!!!
What inspires you?
My Support Team…
It’s one thing to have your whole life change and get completely turned upside down. But to be incredibly blessed with such an unbelievable support team a.k.a. my incredible family, I honestly don’t know what I’d do without them and I have no idea how I would have handled any of this without their love and support. From my mother and sister spending countless sleepless nights with me trying to just make me somewhat comfortable, to both of my parents rushing me to the ER with extremely terrifying experiences, to my father driving me to endless Doctor’s appointments when I wasn’t well enough to drive and never giving up on finding good Lyme Doctors to get me treated when I almost died, and to my big brother just simply always being there for me in every way he can be. And so much more!! I mean I couldn’t be more blessed and I am SO unbelievably GRATEFUL for every single one of them, they are all my rocks. And of course my best friend, Izabela for always being there! I appreciate you so much! You don’t think much about all the pain and suffering that you’ve been through when you go through something like this. You do however think about who was there for you, how far you’ve come, and how it molded you into this extremely strong person that you had no idea even existed.
If you have suffered from Lyme, or any type of illness, I really hope you have the abundance amount of love, support, and compassion that I did and still have. It makes everything so much more bearable. That is for sure!
The Silver Lining…
There is always a reason we are faced with intense life altering battles in our lives. We never get it in the moment, but somehow wayyyy later through it all, we sort of kinda start to understand and see the bright side of things, or some of the reasoning behind it all I should say. For example, getting Lyme led me to Yoga and Yoga led me to my healthcare work that I’m in now. In which I’m extremely passionate and grateful for both. If you’re wondering how, allow me to explain. I would have never and I mean never been brave enough, let alone confident enough, to think I was ever capable of teaching yoga before I got sick. I always loved it, but I always looked at it as a very complex thing to teach. And it can be. It definitely takes confidence, sharpness of the mind, creativity, talent, and so much more. But somehow going through everything I went through, made me fearless. It made me resilient. It made me feel like I could do anything I put my mind to…
When I was in the middle of hitting rock bottom and I found out I was in fact NOT dying, Lol (because I thought I was), my father said to me, “Now that you can see that you have the power to make yourself feel worse, do you see that you have the power to make yourself better?” Was he right? Absolutely! The power of the mind and your thoughts are extremely powerful. Your body listens to EVERYTHING that your mind says. For example, if I keep saying, “Omg omg I feel so sick. I feel terrible, I’m falling apart, I think I’m dying,” I will in fact continue to get much worse. Now if I tell myself constantly, “I am healing, I am doing much better,” etc. I will only continue to heal and get better. This is not an opinion. This is a fact. Now can my positive thoughts heal me completely probably not, Lol although that would be nice. But a positive mindset sure does help, A LOT!!! When you’re at your lowest of lows though, it makes it a bit tougher, luckily I had someone to remind me…THANKS DADDY I LOVE YOU!
Anyways, I couldn’t be more grateful for my yoga journey!! I wasn’t sure at the time if I was even capable or strong enough to go through an entire teacher training. I was still healing and trying to get myself better at the time. But I knew I had to at least try. I didn’t know much about it at the time to be honest. All I knew is that everytime I walked out of a class, I felt better and stronger physically, spiritually, and emotionally. Every. Single. Time. I felt my body and mind heal with every class. I fell in love. I told myself in the beginning I was only going to do the teacher training for myself and not to become an actual teacher. But once I started, I had no idea something so great could make me feel so alive, yet so grounded all at the same time. My soul was on fire and there’s no other way to put it. I found one of my callings at the time and it was all because I got sick. So you see, sometimes you have to fall before you fly.
I’ve met some amazing people in my CPY (Corepower Yoga) teacher training. Every single person there was just an awesome human filled with such great energy. To be honest, I’ve never met that many amazing people in my life. Our mentors and teachers (Stephanie Azzaretto-Sanchez, you’re forever my favorite!), my fellow students, and everyone else in between. One of whom led me to my healthcare work now. I get to help people everyday. It doesn’t get much better than that. I have amazing bosses, wonderful co-workers, and incredible patients, ALL of whom I love and adore deeply.
As you can see, Lyme brought me on a very interesting path in which I love with all of my heart. And I couldn’t be more grateful for this very difficult, yet completely satisfying journey that God and the universe had planned for me. Do I wish that this all never happened? Of course all the time. But I didn’t exactly get to pick. I didn’t ask for any of it. It just happened. And like I said before, I’m still working on accepting it all and embracing the wonderful person I have become because of it, and soaked in all the rewards that came after and stayed extremely thankful for getting through it all. We don’t get it at the time of the suffering (why would we), but somehow wayyy later, it all starts to make sense. It molds us into the person we are meant to be. Someone so much better, so much stronger than we ever were before.
Read more about Michelle’s journey by following her blog here.
How has Lyme disease affected your life? What inspires you?
This will be my only post for Lyme Disease Awareness month. Noah is my why. He has nay vague memories of a well Mom. He has memories that I wish I could erase. No child should ever have to witness the level of sickness he has been witness to over the last decade. Noah will be 14 next month. He knows more about Late Stage Lyme Disease and the associated symptoms than most doctors in the U.S. The sad reality is that over the last 22 years, nothing has changed in the medical community or with other agencies. I believe that more people are aware of the illness, but the people who can make real change for us, do not care. Even if I woke tomorrow to learn that health insurance companies would pay for me to see a qualified health practitioner and would pay for prescribed treatments, I do not believe the practitioners would agree. Reimbursement from health insurance versus the enormous amount of money the practitioner receives from each desperate patient? We all know the answer.
