Lyme and a Coconut

chronic lyme disease with a taste of nut

Stemming from Hope

  • I’d like to preface this blog post by saying the opinions expressed are mine alone. If you have lyme disease and are considering treatment, please see a lyme literate doctor or consult ILADS. I am not debunking any other treatment in this blog post. People have found success with the treatments where I did not; this is only my story.

Welcome to the Big Deal I’ve been alluding to. The next step in my treatment. You can get the short version on my YouCaring page, or you can read my long diatribe shown below. Because I love to write. And my brain does not know the word brevity.

middle class

After doing antibiotic therapy, herbal tinctures, bee venom therapy, and considering countless others, after my neurological symptoms have increased a lot, I have decided to pursue a major treatment that will not only require a great deal of our finances, but also require us to travel to California this August. We’ll be doing a complete overhaul of my body and mind.

I’m pursuing a treatment that will modulate my immune system, something that is easy for those who are healthy. My immune system is so compromised it does not recognize the good guys from bad and over these past 4 years of being constantly sick, my immune system has waged a full-out attack on my body. We need help, we need remission. And the sooner we start, the sooner my new, healthier life can begin.

In an attempt to explain the details to you while experiencing severe brain fog (I’ve been chipping away at this blog entry for two weeks now), I am going to utilize some wording my friend used in relating the details of this treatment. So thank you, Denise, for allowing me to use some of your wise wording. I will still add my own Lisa quips and funnies, so rest assured this is ME talking, with the assistance of my dear friend for the more technical parts.

The WHY

Three words. Quality of life.

Currently, my most prevalent symptoms are:

Atypical seizures with occasional loss of speech

Memory loss

Brain pressure

Stabbing pain behind eyes

Sinus migraines

Loss of concentration and multi-tasking

Inability to find words, express myself clearly, take in information

Temporary paralysis of facial muscles

One-sided “freezing up” of body

Severe joint, muscle, and nerve pain

Use of a walker at times

Light and noise sensitivity resulting in hardly leaving the bedroom

Mood irregularity, including worsening depression, irrational fear, anxiety, paranoia, rage, hallucinations

Severe fatigue, inability to bend over or carry anything or walk without needing to immediately rest

Internal body shaking

Light-headedness and heart palpitations

Night chills and sweats

With no cure for chronic lyme disease, there are treatments that can give me a better quality of life.

The WHAT

In August of 2017, my husband and I will travel to Infusio in California where I will go through stem cell treatment. Since incorporating stem cells into their program, Infusio has seen an 85% success rate with lyme patients. 5% they don’t hear from again and 10% stagnate or don’t improve. Kelly Osbourne, a celebrity with Lyme, went to their clinic in Germany and recently spoke about how they saved her life. These are NOT the controversial embryonic stem cells which carry a risk of cancerous tumor formation. These are adipose stem cells, or stem cells derived from a patient’s own fat, which are dormant in the body and have no risk of rejection.

The SAY WHAT, AGAIN?

Yes, I said that controversial word: stem cells. But like I said, this is NOT embryonic stem, but are adipose stem cells. So, concerned citizens, rest assured – this goes along with my values. Infusio’s cell therapy has worked miracles for those with cancer and other degenerative illnesses.

The HOW

During my time at Infusio, I will spend 10 days receiving supportive IV therapies – about  4 hours a day! Hello, Netflix!

flash

At the end of the two weeks, I receive my new stem cells. Woot! Woot!

busy cells

Think of it like my former body-state was a blackboard with chalk markings all over it making things messy and unreadable. My new stem cells will act like a blank slate, helping my immune system re-learn how to run a healthy body and better fight the lyme infections.

The THEN WHAT?

Well, my husband I will be staying in a comfy location during treatment where I can have lots of rest, quiet, peace, and the ability to either get quite sick, which is normal for some, or have some good days, which is also normal for some.  Like all treatments, each body is unique and people will react differently to each treatment. I hear great bonds are made with the 5 other patients, lifelong friends who understand and will support one another. I look forward to that.

The 100 DAYS (which sounds like an apocalyptic TV show)

tumblr_inline_nxsdi1nXjL1t7z78b_500

Once I return home, my body will be in a healing state. Infusio does a lot to prepare me for the first 100 days which are crucial for healing. My new stem cells will replicate 10 times every 10 days. Similar to when I’d talk about having a Herxheimer reaction (feeling sick before feeling better), I must expect some ups and downs. Some patients start to see improvements during this time while most have an increase of symptoms and a carnival ride of flare-ups. This is normal. Which stinks, right? But unlike other treatments I’ve done, I don’t have to wonder if the flares mean I’m getting BETTER or WORSE. The stem cells have a LOT of work to do so whatever happens, I know it will be my body learning. And with all learning comes setbacks. The setbacks will be worth it. The quality of my life has become next to nothing with me in my bedroom due to seizures or pain or any number of symptoms. The worst of my symptoms happen 85% of  the time at home and that number is rising because I’m able to be out of the home less and less. That also means I am in the bedroom, coping with whatever issue I have more often. Which also means I am not with my family. When I am healthy enough to be around everyone, and believe me, the kids ARE excited – I am on constant guard, managing potential pain and seizures. On guard all the time, ready to retreat if need be. It’s still that fight or flight routine I MUST stop. To me, that is unacceptable. I will not spend 85% or more of my time isolated in my room, missing out on my family and friends, missing out on life. I have work to do.

Enter the Mind Rewiring and Renewal Project! (prescribed by ME)

But in order for that work to happen, my body must be able to heal in as low-stress of an environment as possible. Anyone who knows me knows my life is pretty stressful. And I can sometimes be a rather stressed individual even when not experiencing external stress. Because this is a WHOLE BODY treatment – I’ll have to change diet, learn to move around more, rest better – the most important thing I’ve identified having to do is CHANGE MY STINKIN THINKIN.

stinking thinkin

Man, I used to hate that phrase. But if your body is a clean slate and you want it to learn health, you obviously don’t want to be pouring dirt and slush into your mind. So with the help of EMDR in counseling and utilizing other stress management skills, I am doing a total overhaul of my thoughts. Flooding myself with positivity and hope each day.

This. Will. Be. Hard. 30 plus years of thinking and looking at life a certain way will wire your brain, literally, to go toward either positivity or negativity. I am going to learn to rewire those patterns so that, one day, my automatic response will be one of peace and calm. Sounds fun, right?

be fine

I admit this is the part I am most concerned about. BUT in the spirit of what this whole thing is about, I am going to say I am filled with HOPE and EXPECTATION that  my mind, body, soul, and spirit will be transformed during this process. I just know I am going to find profound healing on so many levels. We all know there is no cure for lyme, but remission is possible. I’ll take the odds Infusio reports based on feedback from former patients. Most definitely.

The HOW YOU CAN HELP

I’m starting up a YouCaring site – if you feel called to, you may contribute financially there. This treatment is significantly higher than any one I’ve tried before; however when you add up all the out of pocket costs of antibiotics over the years, tinctures, bees, and if I’d have to start other therapies like IV antibiotics, for example, (a common “next step” if oral antibiotics fail), the cost of Infusio is a better deal than all those years of other therapies that haven’t worked and likely will not work for me in the future. Any amount helps. Literally. We are using various safety net funds to pay for this, but my husband said it best when I was worried about paying for this: “I’d rather you have a quality of life than us have money to survive on later” Pretty awesome husband.

The YouCaring fundraiser isn’t meant to pay for the procedure (but hey, miracles can happen), rather we are hoping to recoup the costs of airfare, lodging for 14 nights, food, and transportation to and from the clinic. Any amount would help; even one dollar adds up to $10 if 10 people give $1. And that can be one meal. Anything is humbly appreciated.

Another thing is, you can pray. I believe prayer to be one of the most powerful things one can do to help another. If you are not one who prays, good thoughts go a long way, too. Please send only positive, hope-filled, encouraging thoughts. I will be detaching from all negativity as much as possible so do not worry about me; try not to attach fear or doubt to this process. I will need your positivity just as much as my own!

I would also love to hear encouraging words from you! You can leave a note on YouCaring. You can leave a comment here on the blog; you can email me, Facebook message me, send note by donkey – I’ll love it all! Chronic lyme can isolate you so much;  I have missed out on so many events and friendships. I LOVE hearing from friends, near and far, old and new, and would be so happy to read your well wishes.

I think I will start a separate Facebook group where you can more closely follow my updates (with fun pics and stories!) so  my regular page isn’t blown up by my recovery posts. 😊 You can support me by joining that page and encouraging me there, if that sounds interesting to you. Message me on FB for access to the page and I will let you know when I start it up!  You know I’m a writer, so you know the page will NOT be  boring. As usual, I will also be updating you on my blog, Lyme and a Coconut.

Share, share, share! If you know of someone who could be helped by my story, please share. If you know of someone who could help, please share. I am as passionate about advocacy as much as I am about recovery.

FINAL THOUGHTS part 1

Thank you. Those words seem insufficient for what I feel for all of you who have rallied around me all these years. I know it’s been hard on you too, not knowing what to say, how to say it, when to visit. I’ve lost some friends and gained new friends. I’ve found incredible blessings during this dark valley, and am more than ready to rise up and teach and reach others! That could have only happened with the outpouring of love and support from YOU. Thank you.

FINAL THOUGHTS part 2

Two weeks later, after typing all this up, friends, my hands are burning, stinging, curling into themselves. I need my hands to write. Writing is my life and something I’ve not been able to do, creatively or logistically, in 3 years. Indeed, the pain in my hands and the fog in my brain, the seizures consuming my body, makes it that much harder. I wanted to share this last bit because the simple act of typing this up has used up all my energy and has wasted my hands. Now I must rest and let my brain and body recover. This is how it is. Every day. I need to write again. It’s akin to breathing and eating.  I WILL. And so I thank you for loving me, supporting me, and believing in me!

as long as it is forward

Ever forward!

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