lymeoutlyndsey

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

LYME RECOVERY UPDATE and a note to those still suffering

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Hi friends! It’s been a long time since I’ve updated this blog and it’s because I’ve been out having FUN and LIVING life! Yay! I am now 2.5 years into treatment for Late-Stage Lyme Disease and am recovering really well. My exercise tolerance and energy level has increased dramatically over the past 3 months. Just as an example, this morning I went to my kettlebell sport class, then went to brunch with some friends, then had enough energy to come home and clean the house (including scrubbing the bathtub). Just 1 year ago, that would have been impossible. I am so grateful to have had such incredible improvement recently. I am still in treatment with my doctor in Seattle. Still on antibiotics and lots of supplements. Also, I had another Lymestop treatment with Dr. Smith at the end of April. I have had a lot of questions about what I think is definitively responsible for my recovery and my honest answer is: I don’t know. I wish I could tell you 100% what has worked so well for me, but since I am doing so many things at the same time, it’s impossible to know. My current treatment regiment includes: antibiotic and enzyme therapy, Lymestop treatment, drinking Asea, exercise, eating a healthy diet, regular infrared sauna treatments, Rolfing, chiropractic care, and regular somatic psychotherapy appointments. I will do another blog post soon about my thoughts on the effectiveness of each of those treatment modalities. I think the combination of many things has been necessary for my recovery. I wish I could give answers to you all about what may be effective for you, but the truth is, you have to listen to your body and find out for yourself.

Lately, I will have days where Lyme Disease doesn’t even cross my mind. I mean, I’m still a slave to pills 11 times a day, but I don’t actually think about how sick I am, because I’m not! It’s truly incredible. The other day, I took my dog to walk a loop that I used to have to break up into segments and sit and rest between slow painful walking intervals; and not only did I have enough energy to walk the entire thing, I started to RUN! I got a couple of minutes into my run and I felt fear start to creep in. Fear that I was going to start hurting soon and that my energy was going to drain and I would have to sleep for the rest of the day. But, as I kept running, I realized that the pain was not coming back and that with each step, I felt MORE energetic. At that moment, I started sobbing in the middle of the woods. (Sobbing and jogging = awesome combo! Ha!) It was like some incredible cloud had lifted. Like I had been released from jail. My joints moved freely and my heart beat to a regular rhythm instead of painful palpitations. I cried out of joy and disbelief. I cried because it has been a long difficult journey to this point.

I also cried because I thought of all of those out there still suffering. Living in pain with no sign of relief. I cried for them knowing that they have a long journey ahead. Knowing that some of them may never get relief. I cried because I wish I could change the effects of this terrible infection, but I can’t. I know you are out there and I know you feel alone. I know you think there is no hope, but I am here to say that there IS! I started running faster and starting running not just for myself, but for all of you out there who are still looking for answers. All of you who would do anything to be able to simply walk around the block. My thoughts go out to you and I hope and pray that you find answers. That you find what works for you. That we will no longer be ignored by the medical mainstream. That the scientific community will put more effort into Lyme Disease research. I am here to say that recovery is possible. You have to do everything in  your power to get better, but it can happen.

Do I know that ALL people can recover as well as I have from Late-Stage Lyme Disease? No. I don’t. Every body is different and every body responds differently to different therapies. All I can do is hope that you find something that works for you and be grateful that I have found what works for me. And trust me, I am fully aware of how lucky I am to be recovering so well from this ugly illness. I wish it were the same for everyone. I know it may not be, but I also know that there are more people out there than you think that are beating this thing! The internet is full of horror stories, because when people start to get well, they are out living their lives instead of posting on the internet. I know that is true for me. So hang in there.

I do still have hard days when I change medications, so I am still actively fighting; but I feel that I am well on my way to remission. Lyme Disease will be something that I manage forever, but I am living a fantastic life. Thank you to everyone who has helped me get to where I am today. I look forward to spending more time doing the active things I love.

I am afraid to announce that I am a Lyme “Success Story”, but I think I just might be. To all of you still suffering: have HOPE!

Love,

Lyndsey

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You have all saved my life!

Hi folks!
I just wanted say thank you for contributing to the success of my fundraiser! If you ordered one, you will receive a card from me over the next two months. If you ordered a ukulele song, I will attempt to “the band” together before the end of the summer. I will post videos here. I can’t wait! I am overwhelmed by how amazing my community has been and continues to be. I am forever grateful and in awe of what is possible when us humans come together. I would not be able to be the Late-Stage Lyme success story that I consider myself to be without your help. You truly are amazing and have played a direct role in changing my life for the better! With the money raised during the fundraiser, I will be able to make it through the next year of treatment. My fingers are crossed that after that, I will be finished! You should know that my health has been better than ever lately. I have been able to start riding my mountain bike again a couple of times a month and am training for a kettlebell sport lifting competition in September. I am back at work and feeling alive. I am not 100% symptom free and I still have some struggles, but I am leading a really good life for somebody with Late-Stage Lyme Disease (heck, I am leading a good life for any human). I look forward to updating this blog as my journey continues. My thoughts go out to those still searching for answers and suffering. This illness is really serious and continues to grow every year. Please protect yourself and your loved ones to the best of your ability. I thank you all from the bottom of my heart for having faith in me. Your support has been tremendous.

So much love to all of you,
Lyndsey

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Win this painting for $10 and help me get well!

For every $10 you donate, your name gets entered once into a raffle to win this gorgeous watercolor painting by Cheryl Long. Click HERE to enter! The raffle ends in just 4 days!

https://www.indiegogo.com/projects/no-rules/contributions/new?perk_amt=10&perk_id=1998201

Snowy Owl450

To see more of Cheryl’s beautiful work, go here: http://www.cherylrlong.com/

 

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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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