lymeoutlyndsey

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

I need your help!

Please watch this video and help if you are able! Please share my story in any way you can. If I reach my goal, I will donate $1,000 to the LymeLight Foundation to help a child in need. I need your help to finally beat this thing for good. Thank you from the bottom of my heart.

Click here to donate  or visit:

https://www.indiegogo.com/projects/no-rules/x/6191861

No Rules from Lyndsey Needham on Vimeo.

 

I will be back to regular blogging when my fundraiser is over and I’m looking forward to sharing new information with you all. :)

Much love,

Lyndsey

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This is me. Please watch and share.

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Learning to be Vulnerable

Hi friends. Part of living with chronic illness is learning to be vulnerable. Today, I have done quite possibly the most vulnerable thing I have ever done. Please take a look at the link below. Watch the video and help in any amount or way you can. Please share with everyone you know, post on your blog or website. Any way we can get the word out there. My promise to you is that I will continue to fight for full recovery and will continue to share what I have learned in my journey so that it may help you. I will continue to support Lyme research and those in need. Thanks for reading.

So much love and gratitude,

Lyndsey

https://www.indiegogo.com/projects/no-rules/x/6191861

Lyme out shoes

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A Link For The Young Ladies… I Have Lyme, Can I Get Pregnant?

lilneeds:

Having 5 friends that are pregnant at the same time has made me wonder about starting a family of my own some day. I am just now starting to research Lyme and pregnancy. There are LOTS of questions out there that have not yet been answered with solid research. I’m hoping we get more answers in the next 5 years so that I know what my options may be. Here is an informative piece. Good information, though, I don’t like the part where he says that many Lyme patients who complete treatment relapse at some point. The ugly truth about this ugly disease, I suppose.

Originally posted on My Color Is Lyme:

Because there is documentation of Lyme being transmitted prenatally by a mother to her child, having children when you have chronic Lyme is a huge concern. Here is a great article talking about this and the steps to prevent transmission.

http://www.treatlyme.net/articles/2014/2/3/lyme-pregnancy-will-my-baby-get-it-what-about-my-health.html

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Read This!

This is one of the best articles I have seen written about Lyme. Read it and share it!

http://news.nationalgeographic.com/news/2014/02/140228-lyme-disease-borrelia-burgdorferi-deer-tick-science/

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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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The Truth About Diet

Guess what?! If you have chronic illness like Lyme, there is absolutely no need to follow a restricted diet.

SIKE! For any readers not familiar with that lovely term from the 90′s, “sike” means JUST KIDDING! Wouldn’t it be wonderful to not have to regulate the food we eat at all? Eat as much cheese, french fries, and ice cream as we could handle and not pay a price? Alas, that is just not the way the world works. The Universe is sometimes a very trying place where the things that we crave are actually not healthy for our bodies at all. WHHHYYYYY??!!! *crying and waiving fists at the sky*

Well, I’ll never figure out the nature of the Universe, but I certainly HAVE figured out (over and over and over again) that I must follow a restricted diet to thrive with infection. I am certain that is the case for many chronic illness sufferers and although sometimes I know you just want to say FORGET IT, you must dedicate yourself to the cause of recovery. Taking pills is not enough. Your food must also be medicine.

As clever as you are, you may have guessed that this blog post has been inspired by a week of me saying FORGET IT. It was wonderful throwing all of my diet restrictions out the door (okay, well not ALL of them; I remained gluten-free) and digging in on some gluten-free pumpkin pie, buttery gluten-free chex mix, greasy bubbly potatoes au gratin, pork, pork, and more pork. My taste buds and dopamine centers in my brain threw a serious party. But the rest of my body revolted. The price I paid for my taste bud party is as follows: brain fog; fatigue, joint pain; feeling of suffocating- can’t get enough oxygen, easily winded; sore, cramping, tired, slow-firing, and oxygen-deprived muscles; a feeling like my blood is literally thicker; poor circulation; and formation of sore, burning, stinging, what looks like blood blisters on  my toes.

Over the past two years, I have tested my “theory” that diet restrictions make a big difference in my recovery, by eating poorly and then paying the price. Sure, there are times when my body is doing pretty well and I can tolerate more falling off of the wagon; but I will always feel better if I follow a restricted diet. After reading the symptom list above that is worsened by poor food choices, it seems that eliminating problem foods would be simple.

Why is it so hard for us to restrict our diets?

There are lots of reasons why diet restriction is difficult. Here are 3 important ones:

  • Addiction: This is the biggest one. We have become literally addicted to certain foods, especially high carbohydrate (high sugar) foods. According to a recent study published in the American Journal of Clinical Nutrition on June 26, 2013, the parts of the brain that regulate food cravings are the same parts of the brain responsible for substance abuse. We all know how difficult it is for folks with substance abuse problems to break bad habits. When you are struggling to maintain your diet, have some mercy with yourself, but also use your spirit to overcome your insistent brain. This is what I struggle with the most. There are days where I crave ONLY things that cause my symptoms to flare. It is a constant struggle, but I am not giving up.
  • Isolation: Following a restricted diet can lead to feelings of isolation. You may feel like a weirdo. You can no longer go have drinks with friends or go to whatever restaurant you chose. Even at home with family; you will have to eat different foods than everyone else. Just remember that although they may sometimes tease you about your diet or try to persuade you to eat a burrito “just this once”; the reality is, your friends and family want you to be well. So, be strong in your convictions and find other ways to spend time together. Have tea at happy hour. If you are confident in your decisions, everyone else will be also.
  • Convenience: Healthy food is not always convenient. Burgers and fries are convenient. Eating what everyone else is eating is convenient. Making your own food and planning ahead for vacations is not convenient. This is true. But, let’s ask ourselves, how many truly wonderful things in life are quick and convenient? It’s going to take some effort. We can do this!

Well, what SHOULD I eat?

There is no one perfect diet for everyone. To really learn what works for your particular body and your particular illness, you must do some trial-and-error. You can start with an elimination diet and eliminate all things that you suspect give you trouble for a minimum of two weeks. Then, slowly add those things back and take note of what changes in your body.

To really learn what YOU should and shouldn’t eat, you must first learn how to really connect with and listen to your body. Sometimes my body gives me small cues about food, like a slight increase in muscle pain or sinus congestion. Other times, the cues are loud and clear in the form of swollen blistered feet. If needed, utilize a food journal and make note of what you eat and the symptoms that follow.

Where should I start?

If you are just now starting to explore a restricted diet, keep in mind that starting slow will be your best approach. Quitting foods that you are likely addicted to cold-turkey doesn’t work for many. Slowly eliminate different foods over the course of weeks to months.

Spend some time researching different diets that sound like they may work for your body. Personally, I do best with eating mostly vegetables and lean meat or fish. No dairy, no sugar, no alcohol, no gluten, no soy, and very limited grains (quinoa, rice, and sprouted mung beans only). I also do best with a low-fat diet. The reason for this is not clear, but based on the research of Dr. Stephen Fry on Protomyxzoa Rheumatica, it is likely because this infection grows 100x faster in the presence of fat. Since I am active, I do need some fat, but it’s a fine balance.

Can I not WILL my body to accept food?

I have no doubt that our mental state can affect the physical state of our bodies. It’s true that if you completely flip out over the fact that you accidentally just ingested a small morsel of gluten, you will definitely phsyically suffer. If you, however, calmly accept that you ate something you shouldn’t have, but that it’s okay; you will likely not suffer consequences as severe. The connection between the mind and body is real. I think changing your attitude about food can change your bodies tolerance of some foods. HOWEVER, that doesn’t mean that I can decide to tell my body that it’s okay that I am eating a pound of fried mozerella sticks with no harm done. There is a balance that you must strike. Sorry. It’s true.

Is it okay to cheat?

The amount that you can stray from your diet is dependent upon you. Are you someone who falls hard off the wagon and stays off for a while? Or can you put one foot off for a moment and then get right back on? I tend to fall off for brief periods, but when I fall, I fall HARD and may find myself eating an entire bag of potato chips without blinking. I am learning about myself and how I can set myself up to succeed more often.

Sometimes, I will have a month where my inflammation is minimal and I can indulge in some gluten-free treats now and then. Other times, I must be very strict and cling tight to that wagon. Learn your own habits and the severity of your own symptoms. Only you will know what is “worth-it” or not. Be honest with yourself.

Use Friends for encouragement

Just like overcoming substance abuse, overcoming food addictions can be difficult. If possible, find a friend that wants to dedicate themselves to a better diet and support each other. Celebrate your success together!

I, for one, will be on the painful road of withdrawal over the next month as I slowly get back to a more restricted diet. Follow me on Facebook here and tell me about your tricks and tips for sticking with a restricted diet. Love to all!

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Dr. Smith Update and Silly Feet

It’s been 6 weeks since my treatment in Idaho with Dr. Tony Smith and I know many of you have been asking how I am doing, so I thought I would give you an update. Before I go on, there are two important things that you should know about my treatment with Dr. Smith and why it has not gone the way that things usually go.

First: I am still on intense antibiotic therapy. Before going to see Dr. Smith, I had been on antibiotic therapy for nearly a year and a half. During that time, I made huge gains in recovery and I was not willing to risk losing that by going off of antibiotics. Dr. Smith has told me that I am his first patient to refuse to go off of antibiotic therapy following his treatment. He doesn’t know what to expect or how that will effect the outcome of his treatment. Antibiotic therapy is not effective for some people, but it has been hugely effective for me, so I plan to remain on antibiotics until my symptoms are gone. For folks who can’t tolerate antibiotic therapy, Dr. Smith’s treatment is ideal and if you go see him, I would love to know how things go for you.

Second: I have a co-infection called Protomyxzoa Rheumatica (herein referred to as PR). PR is a newly discovered protozoal infection (similar to Malaria) that complicates my treatment. To read more about PR, go here. Dr. Smith has recently started studying how he can treat PR during the Lyme treatments and he attempted to treat me while I was there. However, I got an email from him a couple of weeks ago saying that the method he was using to treat PR was not correct, but that he has it figured out now and wants me to come back for free treatment as soon as possible. He doesn’t think my treatment outcome will be ideal until I can come back and have PR treated correctly. I really appreciate the personal email that I received from Dr. Smith, but what I appreciate more is that he is willing to openly admit that he was wrong and offer to try again for FREE. How many practitioners have you heard admit to being wrong and willing to try again? I really respect that about Dr. Smith. He believes in what he does and he truly wants to see folks get well. Thanks Dr. Smith! I am going to try to make it back to his office for a quick visit in December.

So, considering both of those things, I don’t think it’s fair for me to report on the success of his treatments without receiving full and proper treatment. I will report back about 6 weeks after my final appointment in December. Until then, my journey with antibiotic therapy continues!

Moving on now, let’s talk about feet! I have struggled quite a bit with my feet recently. Currently, my toes look like this:

toes

Before I started antibiotic therapy, I had two toes on my left foot that would occasionally swell, burn, and get little red dots on them. I found no doctor that could explain this mystery other than diagnosing me with Raynaud’s. My feet go from being hot, red, and swollen to being freezing cold and turning purple. Sometimes they are hot AND purple. The little red dots become sore and eventually “bleed” into each other and become red blobs. My feet hurt to stand on in the morning, they swell with activity or heat, and sometimes I have sharp nerve stings in my toes. My doctor thinks that my feet issues are related to my co-infection, Bartonella. Lately, my feet have gotten much worse. Instead of the problem being two toes on my left foot, it’s now all toes on both feet. Considering this, I called my doctor. She is certain that it is Bartonella and put me on yet another gnarly antibiotic. This time, Bactrim. I am currently on Plaquenil, Minocycline, and Bactrim. Ugh. My boor body.

I have a couple of my own theories about my feet. My first theory has to do with the above-mentioned Protomyxzoa Rheumatica (PR). According to Dr. Fry, the doctor currrently performing the research on PR, the organism infects blood and behaves much like malaria. I have significant amounts of biofilm in my blood from this organism. I think it has decided that my feet are great places to live for some reason and it is damaging the blood vessels in my feet, leading to burst blood vessels in my toes (the little red dots) that then bleed into red blobs. That’s the first theory.

My second theory is one that may be hard to grasp for some, but it makes the most sense to me. My second theory is that the damaged vasculature in my feet is from damage to my sympathetic nervous system. Your sympathetic nervous system can cause random vasoconstriction and vasodilation that would explain the sudden and random temperature and color changes and burst blood vessels in my feet. It feels like a response of my nervous system to me. Also, something else interesting is that when I have a particularly intense session with my somatic psychotherapist, my foot or feet will swell, get hot, turn red, and burn. Sure, it could be that the emotional stress of those sessions aggravate infection in my feet. But, my point is, whatever is going on in my body, is sometimes (maybe always?) directly effected by my thoughts and emotions, subconscious or not. This is a difficult concept for some, but my experience with chronic illnesses has shown me that there for sure is a connection. It doesn’t mean that working through your “issues” will cure your body of infection without antibiotics, but we can no longer deny that there is a link, even if it is subtle at times.

Has anyone else had experience with feet that look or behave like mine?

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Johnny Rash and the Burning Ring of Fire

Okay, well, it’s not actually a ring. It’s more like a rash all over my entire body. I have developed a lovely rash from head to toe. It is exactly the same as the rash I got immediately after my initial tick bite in 2004. It is also accompanied by the same symptoms as when I initially got bit: constant post-nasal drip; sinus pressure, fatigue, increase in joint-stiffness and pain, overall flu-like feeling. I feel like I am 22 again! Don’t I look it?Image

ImageImageImage

So, you may be like me and are asking, WTF?! What is the deal with this rash? I would love to talk to somebody who got infected with Lyme Disease in Northern Italy (where I was infected) and ask them about their symptoms and their treatment experiences. Since there are tons of strains of the Lyme bacteria, it may be that the handsome Italian version behaves a bit differently than what we have here in the US of A. So, if you know anyone in Italy who has gotten Lyme there (and went initially untreated), please send them to my blog or email. lilneeds@gmail.com

Anyways, I have a few theories about WHY this rash is happening:

1) I started a new treatment cycle on Monday that involves the addition of Oregano Oil to destroy biofilm and expose bacteria (more on that amazing herb later) and added the intense antibiotic, Clindamycin. Perhaps I am finally destroying enough biofilm that the little buggers are actually exposed to my immune system and antibiotics and this rash and accompanying symptoms are a herxheimer reaction, which would be a GOOD thing.

2) The rash and associated symptoms are caused by thriving infection (Lyme or various co-infections). That would be, obviously, a bad thing.

3) I am having an allergic reaction to Clindamycin. Also, bad thing.

4) The combination of the treatment I did with Dr. Smith as well as upping my antibiotics has finally really packed a huge punch to the bugs and it’s a herx. Good thing.

5) I have some sort of crazy other virus or infection unrelated to Lyme. Bad thing.

Basically, you can drive yourself crazy trying to figure out exactly what the heck is going on sometimes when you have Late-Stage Lyme Disease. I’m sure all of my fellow Lymies know what I mean. It is generally a futile effort. So, last night I decided to spend minimal time trying to actually figure this damn thing out and just laugh about it. (Well, and of course, I emailed and called my doctor).

My friend Nikki started texted me song lyrics with the word rash replacing the actual words. It was super corny, but I like corny jokes, so I laughed a lot. Laughter is an important part of recovery. My two favorites:

“Like a rash (Virgin). Scratched for the very first time!”

“I like red rash and I cannot lie, you other brothers can’t deny, when a girl walks in with an itty bitty waist and a red rash in yo face…”

I know, I am lucky to have such a good friend. Feel free to create your own rash jokes in the comments below. Hang in there, Lymies! Laugh about it when you can. :) Much love, Lyndsey

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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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