Lymes Disease Healing Journey

There are no quick answers here. True healing is a journey of the individual in a web of possibilities. The more you truly care for yourself, the more likely you will recover and find the best answers for yourself. You are the one who heals and if something or someone feels ‘right’ go with it and if it feels ‘off’ or ‘wrong ‘ drop it fast. You don’t have time to waste.

Here’s some of my story. Read it, take what feels right for you and ignore the rest. Only you can heal yourself, your job is to find what is right for your own personal journey, what worked for me, may not work for you.  It might though… Here’s a little bit about my journey.

April – May 2018…

I haven’t written much lately because 2-1/2 months ago I started on a Lyme protocol that is (good news) effective and (bad news) causing major Herxheimer reactions (which in healing Lyme’s is the good/bad).  I cannot believe how much I have learned from this experience.  Right now I’m typing as fast as I can because I have a short window of time each day when I have clarity of thought and enough physical energy to complete tasks I had to put off until this window of clear energy.  So there’s one thing – efficiency and accomplishment. I can accomplish a lot in a little bit of time.

However, this window of time lasts about 4-6 hours, then as the “window closes”,  I experience a mixture of pain, physical exhaustion, or brain fog. Sometimes all of these, sometimes just one or two.  It is entirely unpredictable. This article may jump around a bit, welcome to Lyme brain…

….Thoughts on dealing with Lyme’s:

I’m two months in to my second round of Lyme disease treatment. I learned a year ago that I had chronic Lyme and then I realized, this year, that I wasn’t done with it again, because I was getting progressively more sore all over my body.

I went to my alternative doc and he tested me again and said that yes, you have Lyme disease and you’ve had it for 7 years.  (The test was by a traditionally trained acupuncturist who is also trained in the latest and most advanced natural and energetic therapies in the world.)

Lyme’s can hide in the body so there aren’t tests that can accurately test for Lyme. I trust my alternative health practitioners and haven’t had any blood tests. (now many medical doctors are saying, if you think you have Lymes, don’t test for it before you start treating yourself–there are no accurate tests.  Doctors are treating it not because of a blood test but because of a set of symptoms).

As soon as I started the treatment, February 23, 2018, I started to experience Herxheimer reactions (when body is fighting something, symptoms can worsen). This started manifesting as exhaustion and brain fog.

Since then each day is different- some days I’ll go through 3-4 days of bone deep fatigue accompanied by brain fog. Some days, nerve pain and difficulty with speech. Every day ends early and there are naps also.

A rare day is one where I can be active and get my work in, teach, clean house and feed myself.

Every other normal day I must plan for the basics, take my supplements, medicine (herbal and homeopathic both), eat as healthy as possible, schedule my work for energetic hours and schedule my naps in daily.

This week I’m nearly done with 2 months of treatment and one more dose of a herbal/homeopathic that stimulates my immune system to fight and kill Lyme co-infections

This week I’ve had more than usual pain, fatigue and brain fog. And another new symptom…trembling – bone deep trembling.

I have to keep telling myself that this too will pass, that because of the flare ups- a detox reaction, the medicine is working and to trust my body – which has utterly betrayed me – to heal itself.

I’ve been reading about one woman’s journey to health after 20 years of chronic disabling symptoms from Lyme and other chronic illness- so I know I’m on the right path. Her story is giving me hope. It’s rare to find a story where someone has recovered from this. It’s easy to find a story of continual decline not unlike MS or cancer. Yes it’s that serious. I didn’t take it that seriously before. It is just as potentially slowly fatal as having cancer, Parkinson’s, MS or ALS.

Several people also become so depressed they commit suicide.

This is not who I am. I am still co-managing a yoga studio, teaching yoga, training teachers and most importantly, take time each week to be with my grandchildren.

Much of my time is spent working on my self care and less time with outings, it is a sacrifice I have had no choice but to make. I’m learning ever more that self care is so hard for me. It feels lazy, weak and selfish to spend whole days or even half days doing what my body tells me is best for healing.

I write this to give reality, awareness of Lyme’s and the importance of self care.

I’m also writing this in hopes that my students or future students will still come do yoga with me because I feel most ‘me’ when I’m teaching. Even though I forget words I can still see something I can do to teach you, even though I may have a tremble, wobble or many days can’t use my right leg – I can still demonstrate one side!

Yoga has been a lifesaver. It always clears the fog if even for a short time, I feel so much better physically right after a practice and it also helps my body clear and detox the die off of the Lyme’s. And from 30 years of practice – I know how to listen to myself, my body and also to you.

Later still in the span of time…

Day 80(?) Took second dose of 1M last night. Super sleepy right now – had a mild fever this morning. Still…seems like less pain in my body. I have lost about 6 pounds since adding super smoothies to my daily diet. Very simple and basic diet – no sugar, no grains, no beans or nuts. 80% of calories is greens, vegetables and some fruit. Morning a pasture raised chicken egg, lunch and dinner big salad and a small portion of wild caught fish/organic/grass fed meat.

Around the 4th month of treatment. I have a little more endurance and time of activity per day. If I get an hour or two nap in afternoon and 8 hours of sleep at night I’m pretty much feeling normal energy – an overactive day makes me bone deep exhausted the next so it’s like an overactive day I’m stealing much of the next day’s energy.

I am trying to not think about it in that way. Instead I focus on the present and in feeling my energy- to tune in to what I need right in that moment to feel well. Most of the time I notice that what I need to do is to let go, relax and allow the wisdom of my body to do what’s necessary to bring itself into balance. More and more I’m seeing how powerful it is to just be and not do. To have my central focus in life to be me, do what feels right in the moment and others around me start doing the same for themselves. Although this sounds selfish. It is the most generous thing one can do. I definitely have more energy to put into my life- I have been able to make smoothies everyday for my husband and I. I have been able to spend time with my grandchildren- even an overnight last night was not overtaxing and taught me more about my own energy management.

I have been following a blog, Real Food Rebel – I found Brenda Cosentino by googling “healed from Lyme’s” because I was tired of only finding chronic deterioration in Lyme Groups and blogs.  The drama of this disease may be interesting reading, but I want to get well. I’m following much of what Brenda recommends in her blog – she has been free of Lyme’s and its symptoms now for 3 years.  That’s where I want to be in 3 years. I’m taking the Desert Biological, DesBio products and now on my 3rd box – 2nd 2-1/2 months treatment with a different potency – under the guidance of Warren King, my natural doc.  I’ve also purchased the Wahl’s Protocol Book and am following a strict anti-inflammatory diet – drinking smoothies daily and a lot of vegetables and some recommended fruits.  Also I have to find time for daily epsom salt baths (haven’t quite achieve daily yet) and naps. The naps I’m pretty committed to.  I really don’t have a choice. My brain or body or both simply stop working for the day at some point, so I find that if I schedule in a nap from 3-4 or 3-5 pm each day, I have some time in the evening where I’m clear headed enough to do easy things, like teach yoga (I have taught now for 15 years, so it is imbedded in my DNA).

Self-Care Mastery…around month 4

I just wanted to say hi and check in to share these things – I don’t have a huge amount of time to write, but I will do my best to keep updating this blog.  Oh! Another thing I have learned is how to ask for help and to say “no” or “I can’t promise that right now”. Letting go of “having to do it all” was impossible for me before this.  Now I have no choice but to let go and right now I still can’t wrap my head around how hard this is to do for me – but learning to let go and trust in the support all around me – people, friends, family, God, angels, nature, sunshine, air…. – it is an amazing discovery.

June 4

I have one more vial in the 1M Des Bio series for Borrelia.  I am still gradually experiencing less pain, less trembling, more clarity.  Although Saturday (2 days ago, I went to 3 things – listened to a lecture, attended a community grand opening event, then a yoga community picnic).  At 4:40 pm, I had to abruptly gather my things and leave. I didn’t even have the clarity to say goodbye. My head felt like it was stuffed full of mud and it might burst open and total brain shut down was imminent.  I laid down at home to sleep for about 20 minutes, then woke up to a mostly clear head again.

Today, I actually got up and left early when I didn’t have to because one of my favorite teachers, Govinda, is at the studio.  I’ll write more about my experience with him in a later blog – because it has been great.

Oh, and I’m still on the diet – it’s the Wahl’s Protocol.  Look it up, there’s a book.  I didn’t do it to lose weight, just to feel better, but I have lost 8 lbs.  Actually two more would be perfect weight for me. Pretty wild! I am at least getting the appearance (if not the feel…) of my body back.  Now for building strength and endurance. Until next time…

July 10 –

I’ll be finished with this 3rd round of treatment by the end of this week.  My normal energy is nearly back. I’m having more clarity and freedom from pain each week.  I have lost 10 pounds. I’m practicing yoga almost daily. Walking is still difficult, but that’s from nerve damage and a hip joint that may be displaced a bit due to scoliosis.  So the next step after getting checked for the Lyme’s treatment progress will be to get some bodywork again. I’m looking into a massage therapist who helped a friend of mine with her hip pain.

I’ve added a few supplements to my diet that seem to be helping also.  MSM flakes, chlorella, SCRAM (a parasite herbal supplement), and Charlotte’s Web CBD oil which is supposed to help with pain and inflammation.  I also tried ice baths (recommended by a teacher friend) and that helped fast with pain/inflammation. Now instead of a whole bath, I’m trying out a bucket of ice water for my most painful leg.  This is supposed to have the same effect as dipping whole body in ice water.

I’ll update further after I see my doc next week.  Until then if you have a chronic illness or pain – work hard, be consistent (daily practice!) — this has taken me 6 months.  I have been in pain for a few years now, so this is a huge improvement that I have almost normal energy and very little pain now.

July 18, 2018 Free of Lymes

I visited Warren King yesterday my LAc. I’m now finished with Lyme’s treatment. It’s gone. I cried when I found out.

I will be spending the next two months rebuilding my energy level and continuing to repair nerve damage (which can take years).

An acupuncturist diagnosis uses pulses and I don’t understand it so won’t attempt to explain it. He also has decades of success treating numerous (usually chronic) health issues and it’s a different philosophy than allopathy.

Every human being is unique. This physician and others who treat the whole patient see the patient and each time ask the body what is needed to heal and bring it into balance. I chose Warren King because I’ve been going to him for help for years and always have had good results.  

How I found him: I found the most effective therapies (by luck, God’s Grace, and asked for referrals. A company in Canada recommended Warren King to me years ago and I’ve been visiting him ever since for when I need help with major health challenges.

I attended some courses in a homeopathic therapy while in college and also am certified in Natural Therapies through Australasian College of Herbal studies.

I’ve noticed that those people who improve or recover from autoimmune and chronic disease are

  1. Typically well educated and
  2. Never stop seeking answers.
  3. They also believe they will get well.
  4. Find a treatment they believe will help and consistently stick with it
  5. Keep trying and never give up
  6. Reorder their lives to put self care as number one priority
  7. Have someone or more than one person in their life who is supportive
  8. Have a greater mission or purpose to challenge and inspire them to be fully alive
  9. Have a spiritual practice of some kind with a deep inner faith in something greater than me, and benevolent and loving universe or God.

I have my husband who is always cheering me on, he’s always working hard to pay for what we need and also making me food when I can’t because I’m too tired.

There’s my grandchildren who love me and tell me that and make me laugh and motivate me to move.

My adult children – who help where and when they can. My son Josh got me back into playing violin with him!  My daughter Jasmine does my hair. It always looks great and she also has been on her own healing and powerful journey. They all make me so proud and I want so much to be around and healthy to see them continue to lead in their lives and they are exceptional community leaders one quietly and the other out loud and fully expressed.  My son Jacob is always there too in spirit – I feel his loving presence and am reminded to be kind to everyone no matter what because you never truly know the pain and suffering that could be lurking inside of someone and behind their mask. You never know that it could be your kind, supportive words and light shining in your eyes that sparks their own healing.

My yoga studio community. My business partner Andrew who is also full up with life challenges is always there for me and all the teachers and students in our little community studio are always cheering me on and helping out and pitching in. It’s such a beautiful thing we are growing together. And we are creating some more projects and expanding to support our greater communities. What a great place to be.

This is life. To recover from life threatening autoimmune disease- I found the wellspring of life. It is my own wellspring. There is one inside each one of us and it is as unique and individual as your fingerprint- yet there are the common threads that bind us all. I am well. I am learning a new language of abundance and strengthening my vocabulary of possibility. I am self care, self love and self expression.

What’s Next…

This journey is still ongoing.  The next step for me is the next step.  I’ve learned to take one day, one moment at a time.  If I’m not in pain or too tired, it is easier to find what is right for me.  Yet, no matter how I am feeling, I have a plan each day. The plan is to pause between …. Everything.  The plan is to create space always for myself first. I am here to serve and I must serve me first to build and gather the strength to be of service.  If I am feeling well and strong, the choice is before me. I include myself in this. Today I am feeling well and strong. I was asked to help out with something today – I said no.  I am conserving energy for myself. I’m completing tasks at home and resting to prepare for teaching yoga tonight.

My class tonight will be great because I am embodying self care – exactly what I want my students to learn.  

For the next two months, I am following a new protocol given to me by my Lyme doc. I’m taking a homeopathic remedy (Stress EZ) to help to heal my nervous system. I’m supposed to eat miso soup every day for two months, drink aloe vera juice, use ½ tsp of CALM magnesium powder in water everyday and make sure I take 3000 IU of Vitamin D3.  Nothing else. This is less than I have been taking… a lot less. I feel giddy about that. I am so happy to be free of the Lymes disease.

There is a lot of rebuilding ahead for me.  I get tired very easily. I walked maybe a quarter mile yesterday and I got very tired, so took a nap in the afternoon, then went to bed very early and fell right asleep.  I woke up at 4:41 this morning – wide awake, so I got up with renewed energy. I still have nerve pain, trouble walking – the nerves in my right leg are always sore, muscles atrophied, and the right hip joint is stuck out a bit (due in part to brain imbalance – from head injury in 2010 and Lymes rushing to the weaker areas a year later).  My pelvis is crooked, the slowly unwinding from my yoga practice with Lynn Shuck, Eischens Yoga teacher.  

I’m also still following the Wahl Protocol diet.  It takes about 30 minutes or more to prepare the ingredients for the smoothie I drink every day.  I usually make enough for two days at a time. I still prefer to sit and write when I know I should get up and walk or do yoga.  I still am having trouble meditating on my own, so I am using a meditation app and playing guided meditations.

I am still happy with the progress.  You see, I have been trying to rebuild my strength in my right hip and leg for over two years.  Every time I thought it was getting better – every day or week or month when I had a day where my leg would support my weight (years 2016, 2017 and the first half of 2018), I would think, “it’s getting better!” or “I’m getting stronger!” and then the very next day, I would be laid up with sciatic pain and nerve pain in my entire right leg.  I watched while I continued to hold onto an extra 10 lbs I gained in 2015 from hernia repair surgery just stayed around and my muscle from years of ashtanga yoga practice, wasted away and was replaced by unhealthy fat and scar tissue which entrapped more nerves damaged by the borrelia burgdorferi spirochete continued to wreak havoc on my immune system, brain, nerves, joints, muscle, ligaments and tendons.  Any attempt I made a strengthening anything was blocked by my body fighting an invader that it could not find or kill because the disease hides itself within a biofilm inside the body tissues to wait until there’s stress. Any kind of stress where my body’s defenses are overwhelmed. It became a never ending cycle that causes many people with the disease to give up and even take their own lives.

You see, I cannot do that.  First of all, I don’t give up.  Second of all, even if I wanted to, my family….we all learned what the impact of suicide is because we have all been trying to live after my son Jacob took his own life in 2014.  

So yes, I am happy with the progress I am making.  I have come out of the darkness and back into the light.  I’ve found my own light again. I am sad, triumphant, joyful, and in love with it all again at a much deeper, fuller level than I have ever been.

Self love, self care.  This is the real path. This is how to defeat the enemy.  Surround yourself with love, love yourself, heal yourself and protect yourself.  That is what I want to teach now, when I teach. The rest of the time…I follow my own teachings.

 

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