lymeoutlyndsey

My journey through Lyme Disease- Healing my body and mind.

Progress

Progress is not a quick thing when recovering from Late-Stage Lyme. As much as you may want to find a pill that you can take to quickly fix it all, that’s just not the way it works. My recovery journey has certainly taught me about patience. Sometimes it feels like I have made very little progress, until I think back to how I was two years ago, or even one year ago. There are a lot more smiles on my face nowadays.

Lately, my recovery has been more visible than it has in years. For example, last week at Jogo CrossFit Bellingham, I was able to run intervals with a 35 pound sandbag on my back. Being able to run alone is a HUGE improvement in my health. I was really surprised to have my body respond, I hesitate to say it, but, normally to such a workout. I took two days to rest afterwards and then just yesterday I was able to go to my kettlebell lifting class. The increase in my body’s ability to tolerate exercise has improved significantly. I still have to be really careful, and can’t do extended cardio and certainly can’t do any sort of max effort; but the amount of activity that I am now capable of would be a dream come true for many Lyme patients and I am not taking that for granted.

Another striking sign of recovery has been my ability to socialize more regularly. As many chronic illness warriors know, socializing when you have underlying pain, discomfort, or fatigue, is a real challenge and can be draining. Yesterday, I was able to visit with friends all day! By the end of the day, I was exhausted, and I’m still recovering a bit today, but the improvement is remarkable. Just two years ago, it was too difficult for me to even breath well enough or think clearly enough to hold a long conversation. Wow. It’s crazy to think about. I was pushing through a lot of stuff to try to live a “normal” life.

Sure, I still have bad days or weeks where I am spending more time in bed or on the couch, not exercising or socializing. That’s just the cha-cha of treatment and recovery. As I get better, the intensity of my treatment goes up and sometimes it catches up to me. There will be hard days. That’s okay. I am encouraged by the improvement that I have seen over the past few months and look forward to more health as time goes on. The average treatment duration for Late-Stage Lyme patients is between 3 to 5 years depending on the severity of the infection. I likely have 3 more years of treatment that will at some point begin to decrease in intensity. The cost of treatment is still a heavy burden. I drained my 401K last week to continue to pay for treatment. That was my last option, but one that I’m glad I was able to take advantage of. That amount of money won’t last me for the next 3 years of treatment, so I will be creating an indiegogo campaign soon with a short video that I will share with you in about a month or so. Stay tuned!

I am celebrating my continued improvement and evolution through this illness. Feeling grateful and hopeful. Much love to you all!

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New Lyme Treatment?

selfie

I am currently sitting in an apartment in beautiful Coeur d’Alene, Idaho eating fresh eggs that the neighbor brought to me with shredded brussel sprouts. I am here investigating a new Lyme treatment with potential. I have had the best couple of days that I have had in a long while. I am feeling more hopeful than ever that I will recover 100% from Late-Stage Lyme. It won’t be tomorrow or maybe not even in the next year or two, but it’s going to happen. I am well on my way. That has not always been an easy thing for me to say, because it’s scary. What if I say that I am going to recover and I don’t? Well, something I have learned recently is that it’s best to go directly towards things that scare you. Simply let go and believe. I needed to let go and believe to make this trip to Idaho.

A couple of months ago, a friend of mine recommended that I go see Dr. Tony Smith, a chiropracter in Coeur d’Alene that does energy and magnetic therapy for Lyme patients. His treatment is called Lymestop. The goal of the treatment is to guide your own immune system to find the stealthy bacteria and eliminate the bacteria naturally. It sounded like a bunch of BS to me. I have a masters degree in science (Geology) and have led my life believing only what I read in peer-reviewed journals. I certainly could not find any information on magnetic therapy or energy medicine for Lyme treatment published in what I would consider to be legitimate journals. So, I dismissed my friend’s suggestion to go see this man in Idaho and continued taking 85 pills a day and giving myself a shot in the leg.

Then, it occurred to me that the current treatment that I am on, long-term antibiotic therapy, has not been proven to work in any peer-reviewed journal either, and it most definitely IS working. Over the past year, I learned to listen to listen to my body in detail. I started to think about things that I had noticed through my experience with Lyme for which there was no scientific explanation. For example, when I am having a flare in the pain in my facial nerve, if I use my cell phone on that side of my head, the pain gets worse. This seems “crazy” and I have no explanation. Sometimes you have to listen to your body and know that what you experience is more true for you than what you may be able to read in a peer-reviewed journal.

This is when my thought process about different methods of healing shifted a bit. I still believe that the scientific method is the best way to keep the general public safe. But, sometimes there are things that are helpful to people that we cannot explain. We know this to be true, because we use the placebo effect as a valid method in all double-blind studies. This means we acknowledge that there are some folks who, when given placebo drugs, recover from ailments the same as those given actual drugs. I am not saying that the success this doctor in Idaho has had is based on the placebo effect, but I am saying that there are things that are operating in our bodies that we have not put into textbooks.

I started looking at renting a car to drive to Idaho. Then, I talked to two separate people randomly who said they had friends who had taken their children to see Dr. Smith in Idaho for intense food allergies and that their children were cured. It still seemed entirely too mystical to me to make the decision to go, but I was certainly more intrigued. I emailed with Dr. Smith a couple of times and each time I got the feeling that he knew what he was doing and really did see results with his work. So, I looked into the cost of Lymestop treatment. When I realized that the cost to be treated by Dr. Smith for six appointments over the course of three days was less than one month of my current treatment, it made sense to go.

I booked a studio apartment on airbnb.com, rented a car, and made the long drive to Coeur d’Alene. I had mixed emotions. I was excited to make a solo road trip and to visit beautiful Idaho, but I was skeptical as well. Before I left, I got an email from David and Shing, the people I rented the apartment from on airbnb.com. David said that he would save some dinner for me for my arrival since they live next door. Their hospitality set the tone for my entire trip.

rocky in car

I took off in the rental car on Monday. I smiled and laughed at how awesome it was to drive a car that could actually accelerate, had working AC, and had a working radio. I currently don’t own a car of my own since I sold my nice Subaru Outback a couple of years ago to pay for Lyme treatment and the one my partner graciously lets me drive is, um, we’ll say, tired. The drive was gorgeous and mostly uneventful aside from 90’s rap personal dance parties courtesy of XM radio. I arrived in Coeur d’Alene at about 7:30 pm and was greeted by a smiling David. He gave me a tour of the basement apartment and it was exactly what I needed. He had turned all of the lights on for me and had Hawaiian slack key slide guitar music playing on the radio. The music was timely since I recently lost my friend Kevin, who was my ukulele teacher. It was a beautiful reminder and made me feel at home. He had dinner for me in the fridge that his partner, Shing, had made. Gluten-free stir fry! It was perfect.

The next day, Shing brought me a kale smoothie that was one of the best I have ever had. She also brought fresh eggs from her friend’s chickens. If you decide to go to Idaho, look them up on airbnb.com. The apartment is on Elm street. You will not be disappointed.

The next day I began treatment with Dr. Smith. He uses a method of muscle testing to diagnose various infections. For you science types out there, you will not find evidence that muscle testing works in the literature. But, based on what happened next for me, I know there is legitimacy to what Dr. Smith does. The only information I gave him was that I tested positive for Lyme. I said nothing else about my other co-infections for which I tested positive for or where most of my nerve pain is. He proceeded to find ALL of my co-infections using his method as well as all of the areas where I have the most pain without me saying a single word. I cannot explain to you how he could have done this. So, that’s when I decided to fully let go. Let go and allow whatever healing was going to happen to happen regardless of explanation.

The treatment involves Dr. Smith identifying where the infection is seeded, and then guiding your own immune system there using magnetic therapy. Sounds crazy, and I suppose it is depending on your definition of crazy. But, the man has a FULL 3-inch binder of heart-felt testimonials written by patients in his waiting room. Testimonials that I could feel were real when I read them. Dr. Smith (and other patients that I talked to) said that if the treatment is effective, I will go through a period of feeling worse on and off for about 6 weeks and then should start to feel markedly better after about 3 months. The first two days, I felt great. Today, I am feeling pretty rough. Really tired, nauseous, sore muscles, nerve pain, etc.

I have no idea what to expect and I am going to let go of expectations and take each day as it comes. I will certainly keep you updated on my progress in case you feel that going to see Dr. Smith might be something you want to do in the future. If you have questions about the process, I encourage you to email him. He responds quickly and has helpful answers. I believe that there are some people who are healers and Dr. Smith is one of those people.

l’ll leave you with some photos I took yesterday while hiking around and spending time on the lake. It was a really wonderful experience. Let me know if you have questions or comments. Have you had success with alternative medicine that has not been proven? Did you struggle with skepticism?

As always, much love! ~Lyndsey

Lyme out shoes rainbow sunshine

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