Having had an undiagnosed illness for over twenty years to finally be given a label of Lyme disease had a profound impact on my life. Not only as an intuitive healer, using the lessons of the experience to hone my own skillsets. But it also taught me that pretty much everyone who falls severely ill has the capacity to slip through the cracks of society, push through only to repeat the lessons again, or completely transform themselves leaving a wake of their old life behind. I know
that I'm only one of many out there who have either experienced or witnessed the devastation that a chronic illness can cause. Lyme disease is particularly cruel in that the suffering is invisible, driving a person into an internal hell of neurological dysfunction on every level. In this blog, I'm sharing with you how I managed to become a dancing miracle after battling Lyme disease for over a decade. Yes, I call myself a dancing miracle. If you are a Lyme warrior, I hope you will be able to call yourself the same someday.
Every week, someone contacts me to ask if I would talk to their friend, relative, or co-worker who is experiencing Lyme disease. The questions are always the same and I end up taking several days to recover from stirring my own traumatic Lyme events. So, I've avoided the subject, skirted people to my book, Heart Broke Open, or request to communicate via email. It isn't easy for me to talk about my experience with Lyme Disease. To heal and recover from this infection was a nightmare. The journey to healing was also my greatest teacher, an awakener, clearer of what isn't in alignment, a provoker, and oddly sometimes my only friend.
I decided to help support you, fellow Lyme Warrior, and me, by putting together the top questions I get asked about Lyme disease.
I feel it is safe to say that I am in remission! Woohoo! Truly, feel better than I have my entire adult life.
I've gone into remission and relapsed too many times to count. It is likely still my biggest fear - to relapse. I don't let that fear stop me though!
I lovingly acknowledge it is there and continue to do the best I can at self-care.
Even though I am in remission, I will have weekly health maintenance for the rest of my life and I have a new norm that I lovingly accept, too.
I have a wealth of information as a patient and as a practitioner, so this is a start to helping you and your loved one understand the complexity of what you are experiencing.
Top FAQs for Lyme Disease
1. How long did you have Lyme disease?
I have experienced the infection that causes Lyme Disease since 1991.
I was 40 when it was finally diagnosed. I was tested four times for Lyme disease before technology advanced for chromosomal testing. Now, you can order the test to do from home! Which is AMAZING! Finding a Lyme Literate Medical Doctor (LLMD) is critical. When researching what type of treatments they do will help you determine if they are right for you. Check out the Igenex company that finally got me a correct diagnosis. They have practitioners on their site as well familiar with this testing (click here).
Once you've been diagnosed you will have it forever. Borrelia and their coinfections are spirochetes which are in the same family as Syphilis, so the bacteria go dormant. These sneaky bastards wait until you become depleted (body, mind, soul) to return again. (click here for more info)
I spent many years researching, trying to figure it out with my mind. I discovered that my brain was too messed up to figure it out that way. I had to go deeper. You are going to have to go deeper than the mind to heal. I offer sessions to help you navigate this journey. Getting rid of Lyme requires a transformation, not just medicine.
2. Did People Not Believe You, Too?
Yes. When I was in my early 20s, I was having another bout that lasted nine months. Spinal Taps, Barium Swallows, and MRIs produced nothing. I came upon a letter the Infection Specialist had written to my father. The doctor had written, "We have exhausted all avenues, the only direction is to have a psych.” After seeing this letter, I shut down. I stopped talking about the crazy symptoms. I pushed through, ignored, and stayed quiet. That is NOT the way. Trust me. I likely made matters much worse by ignoring the symptoms so people didn’t think I was crazy.
In 2004, I was bedridden again. This time for two years. I had to drop out of medical school. The stress of the cross-country move and the program caused me to relapse. Again, a myriad of tests. A doctor said to me, "Well, you seem really happy. Maybe you are Bipolar."
I have family who hasn't spoken to me in decades because they could not understand, nor did they try to understand what was happening. Instead, it is easier to formulate a story based upon assumptions and projections because there are no visible symptoms that they can comprehend.
The very common phrase, "Well, you look good??" crossed many lips. People scratching their heads, forming judgments. I’ve lost many friends to Lyme disease. I’ve lost two significant relationships in my life because of Lyme disease. I wasn’t able to be there for my parents’ end of life because of Lyme.
You’ve got to let go of ANYONE who is negative or unsupportive in your life. Grieving these relationships or worrying about what they think is going to compound your illness.
People would tell me all the time that I looked normal. Here is a picture of me with Lyme disease and one Lyme Free. I can see Lyme disease now and I can smell it on a person too. I think the signs are obvious when someone has Lyme, but that is because I know how it feels.
3. What were your symptoms?
Ugh! This is an area I don't like to talk about. But I am going to do it for you. I understand you need validation for the myriad of strange feelings, sensations, emotions, pains, and symptoms you are experiencing. Could it all be related to Lyme? The answer is YES!
I don't mean to overwhelm you with this. Likely if you have Lyme, you will feel relieved to see one person experience much of the same as you. Over the years, I have experienced these symptoms in multitude and in varying degrees of severity and duration.
Because this is an infection that invades your entire nervous system and all the fluids, nothing is immune. Because just about everything is innervated (with a nerve) any symptom is possible. This can affect the Central Nervous System (Involuntary Action) and the Peripheral Nervous System (Voluntary Action). (Here's an article that talks about the difference in the brain with Lyme - click here)
My first symptom was that my legs wouldn't work. I remember telling my parents, "It's not that I am paralyzed, it feels like I can't get the single from my brain to my legs." This has been the chronic gauge of when I am having a relapse.
Low Blood Pressure (85/45) - this caused me to not be able to stand for more than a few seconds. Walking was impossible. I have many memories of crawling on the floor of the house to try to get into the fridge
Orthostatic Hypotensions/Atrial Fib - because of the low BP I couldn't sit up without experiencing blackouts. This would send my heart into major tachycardia (fast heart rate).
Insomnia - oh the dreaded sounds in the middle of the night with the 2 am witching hour.
Anxiety, Depression, ADD, OCD, Paranoia, Hallucinations
Fatigue is putting it lightly. Unless you experience Lyme disease there is no way to convey the level of sheer strength it takes just to function. I’d say, “I feel like I have a wet, wool blanket on me and I can’t get out from under it.”
Strange Fevers - Over twenty years of strange fevers! Fevers that climbed to 105 degrees F, Fevers that came out of nowhere, Fevers that made me hallucinate, Fevers that brought the pain and fury of this illness. I've likely had more fevers than any malaria case. There are things you can do to support your body during and after a fever.
I offer Online Chronic Illness Consultations to help guide you through the self-care necessary while receiving treatment.
Hormonal Disruptions - Misdiagnosed with a Pituitary Tumor, Addison's Disease, M.S., Fibromyalgia, Hypothyroidism are some of the rabbit holes I got to go down.
Rare tumors - Disseminated peritoneal leiomyomatosis (DPL) , a rare condition that produced a total of ten large tumors which were removed from my abdomen. Yes, this surgery caused me to relapse. Lyme specialists speculated that the bacteria was lying dormant in my uterus and in my pituitary gland. I ended up having a full hysterectomy after three surgeries in hopes this puts a stop to the tumors.
Pituitary Imbalance - even though I didn't have a tumor, my pituitary gland was producing Prolactin levels SEVEN times higher than a lactating mother. My Dopamine and Seratonin levels were ELEVEN times higher than usual. (This was a very validating factor for me with understanding my brain chemistry and altered states of consciousness I experience often, still).
Enlarged Organs - I got a no fly order when we discovered my liver and spleen were enlarged.
Toxic Liver - every stage of my healing has involved maintaining my liver. It is likely that Lyme disease created the MTHFR mutation, (click here) rendering it unable to process toxins. I, still, to this day, have to do liver maintenance to keep me balanced.
Mold Exposure - This compounded a lot of issues for me and can create a toxic nightmare in your body if you have Lyme Disease.
Cognitive Issues - Impaired thinking, inability to read (I had to shut down my healing practice at the time because of this), Visual Disturbances, Hearing Sensitivity, Proprioception Issues (I'd run into walls and hit my head all the time), Short Term Memory (when it was really bad, I couldn't remember if I had eaten), and Slowed Speech.
Temperature - NOTHING would warm me. Nothing. I learned though, that I couldn't let myself get cold, so a wool hat in the summer was a common occurrence. I had to learn that taking care of myself was a top priority or there would be consequences. Ego, vanity, comfort, and fashion all went out the window when Lyme moved in.
Digestive Issues - When the Lyme was really active I literally shit food. It looked like I didn't digest anything! Nothing was working right
Inflammation - Joint pains, fascia pains, abdominal pains, and strange headaches all pointed to inflammation. My lymphatic system was a mess because the low BP put everything to a halt. I swelled. It almost seemed like I blew up overnight.
Enough Already! You get the idea. The difference between Western Medicine and Holistic Health is that Western Medicine has difficulty connecting the dots. They are taught to look at the symptom and with Lyme, the symptoms' breadth is so huge diagnosis is difficult. The beauty that training in Holistic Medicine has taught me is the ability to see how it is all connected on the physiological level as well as the emotional level. You need to begin to address the whole picture, not just the symptoms. That is where I can help you in sessions.
4. What Did You Do For Treatment?
This is a very complicated question. You are wanting the magic pill. You aren't going to find it.
You are going to need to try anything that calls you. It is going to take a variety of therapies, healing modalities, and treatments to get you better. You can't rely on just one doctor. You need second opinions. And you need to be willing to spend the money because the really great doctors don't take insurance. Your body is uniquely yours, with an infection that is attacking different areas in your body than another person with Lyme. One treatment might not work for you and it might be the miracle that saved another.
DETOX DETOX DETOX
I cannot stress enough that the most important thing you can do to maintain yourself is to come up with a detox routine. I have lots of tips!
I did take nine months of antibiotics. They almost killed me and made matters much worse. Mainly because I couldn't detox the chemicals out of my body, so it bogged down my entire system. I recognized this in hindsight, once my body was detoxing semi-properly. I also took a very strict regimen of Chinese herbs as well as Stephen Buhner’s herbal protocol. Without the detox support, there isn’t a treatment that isn't going to kick your ass. The neurotoxin is going to be released. It will continue to wreak havoc as long as it is in your body. If it can’t get the neurotoxin out your symptoms are going to get worse.
Below you will find my favorite treatments that I feel helped me be the walking miracle I am today. I do not have these in any particular order. This is NOT medical advice, but rather guidance as to what worked for me.
Sierra Integrative Medicine This is where I received two months of treatment at their clinic in Reno, NV. It was very expensive, I was homeless (see my book Heart Broke Open) and it was the hardest thing I have ever done in my life. I also feel it was the smartest decision I ever made. They specialize in Lyme Disease and the treatment is holistic and meant to support your body as the bacteria die off.
Recovery is long, 6 months minimum. It is expensive, but when I did the number crunching I realized it was the same cost over 2 months as it would be for two years of treatment with another practitioner. I decided to walk the healing gauntlet and get it over with.
No matter what treatment you do, it is imperative to put your entire life on hold. Find a place that is free, supportive, and will allow you to rest way more than you would like. You cannot push yourself! The mind will try to put an agenda onto your healing. Listen to your body instead of your mind.
Ten Pass Blood Ozone This is my favorite treatment. I still get this treatment as part of my maintenance. I feel this recovered my energy levels, balanced my hormones, and most important one. It helped heal my legs!! The first symptom that plagued me from the start is gone!
Lymphatic Massage and Lymph Brushing - This will be part of my routine for the rest of my life.
Colonics or Coffee Enemas - This is a weekly practice, which helps to detox my body. It improves my energy and gets the neurotoxin out quickly so I don’t have severe symptoms.
5 Element Acupuncture - I had given up on being a healthy person. I thought I was just destined to be “sick” all the time. I decided to go to school for this acupuncture and thought I should get treatment to see if I like it. I didn’t even go for myself, which astounds me. It took two people to help me up the steps into the practitioner's office in the beginning. Specifically, 5 Element Acupuncture got me from being bedridden to swimming laps, functioning enough to go to school, and healed many emotional components affecting the illness.
Detox Foot Bath - I was skeptical of this, just another machine. I still use this as maintenance for detoxing.
DIET - as long as I am eating “clean” which means, no pesticides, hormones, organically grown, local, unprocessed, non-GMO I do alright. I went on the path of severe restrictions for a long time. Gluten, Egg, Dairy, Wheat, Nut Free. I have a lot to share about this subject, as I found that intention is more important and quality than elimination. I find that if I make my own food with quality sourced ingredients, I can eat just about anything without ramifications. But if food causes you inflammation due to allergy or chemicals, you will feel the effects with neurological symptoms.
5. How did you juggle finances, modern lifestyle, and surviving?
Well, in all honesty, not very well. How can you? Your brain doesn’t work right to make these kinds of decisions, so surviving is very challenging. If you have someone in your life that can help you with that. Let them. I didn’t have the help. It was very difficult to navigate financially when I’d look at a number and forget it 10 times before I could transcribe it to paper. I’d forget about a bill due. Anything with numbers just wasn’t going to work for my brain. I still struggle with this, but it has improved greatly.
Try to get help, if you can. I wish I had a medical liaison to help me remember what the doctors were saying. I wish I had a place where people understood what it meant to have no “Neurological Pollution” - Like Noise Pollution, this is my way of describing what someone with Lyme needs.
Neurological Pollution is anything that stimulates or inflames the nervous system. Loud noise, bright light, raised voices, loud televisions, commercials, cold house, and a lack of awareness of our fatigue. Asking us to exert more than we should. Feeding us food with pesticides. Using chemicals to clean and do laundry. All of these things cause Neurological Pollution for someone with Lyme.
I find that most people with Lyme disease do not live in an ideal situation for recovery. How can we in this modern world? There is stimulation everywhere, pollution everywhere, and people that are accustomed to the stimulation. They want us to be a part of it, but that is not possible if you want to recover. Communicating your needs and speaking up for yourself is a journey in and of itself.
The best choice I ever made was getting me into a warm climate. I felt like it took a solid year before I “dried out” from living in the Pacific Northwest. I had to learn to never compromise myself or what my body was asking. I had to get out of Wifi and strong EMFs. I had to remove myself from noise, except that in nature. I lost friends, family, and a lot of money in the process, but wouldn’t have done it differently.
My hope is that one day there will be a convalescing center for those recovering from treatment with Lyme. You are not going to get better overnight. The sooner you accept that the faster you can get on to healing.
6. What supplements did you take?
This is a huge conversation that would be better through my online consultation. Each person is different, so what I took, when, and how may not be applicable to you. I have used Chinese Herbs, Western Herbs, Supplements, Homeopathics, CBD, THC, and Herbs. I’ve made most of these myself as they are so expensive.
Remember, you aren’t going to find the magic pill. You are going to be inundated with everyone trying to get you to take something. You will do whatever they say because you are desperate. There was a point in 2005-2007 when I was taking 56 pills, three times a day.
My favorite way to receive medication is intravenous, which is what they do at Sierra Integrative Medicine. The stomach and digestive system is already slow and likely malabsorptive. IV therapy allows the body to bypass the digestive system.
7. What caused you to relapse the most or make you have a flare?
Emotions. Hands down. Emotions have been and still are the number one thing that affects my state of health. I had to learn to change my perspective on anything that held a negative emotion for me.
The bacteria wants us to be afraid. They feed on fear. They want us to be nervous, they feed on an anaerobic environment from not breathing well. The greatest weapon I had at fighting these bugs was changing my emotional state of being. I did this through therapy, meditation, yoga (lots of it), swimming, journaling, writing, and studying alternative forms of thought that nourished and supported my well-being. I had to change anything in me that caused me to think negatively, feel negative emotions, or perceive my situation as negative.
There is a lot you can learn in a session with me. I have studied the rainbow of emotions in depth with Taoist Five Element Philosophy and Jung Psychology, and I’ve experienced how it changed me to foster healing. I’ve seen the transformation in myself and my patients when we learn how to navigate our internal world.
I’ve learned that if I compromise my soul in any way I will get sick. I’m still learning these lessons.
8. Did you apply for disability?
Yes, three different times. Since Lyme disease isn’t covered under the Disabilities Act, you need a good lawyer to make this happen. I decided not to do this because I felt, myself, that if I accepted my disability I would then be accepting my fate. I felt the psychological ramifications this would cause me, so I didn’t pursue it any further. Each time I applied, I was desperate. Yet, I somehow found another way each time.
Sahara is an intuitive healer, shamanic practitioner, five element acupuncturist, author, visionary, and guide for the New Earth Pioneer online journey. She has woven together an immersive healing experience to help you unravel yourself out of wounds programs and patterns so that you can discover your authentic self. She not only has studied extensively as a healer, she has also lived through many life hardships that have only fostered a deeper appreciation for the journey of the unique soul. She offers a catered online experience with her online healing sessions as well as offers Traditional Five Element Acupuncture from her home healing space in Maui, Hawaii. You can learn more about her healing work HERE. Or schedule a session today.