lymeoutlyndsey

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

I am a Delicate Flower

I know my updates lately have been regarding my awesome recovery, but it’s time to get more real about my continued limitations also.  Lately, since I have been feeling better, I’ve been pushing my body more and practicing self care less. My diet has been less strict, I have been working 40 hours instead of 35, I have increased my exercise, decreased my sleep, and decreased the amount of time I spend in quiet meditation, practicing yoga, or doing infrared sauna treatments. Basically, I’ve been doing what “normal” people do. It’s not working.

Self care takes time. Quite a bit of time, actually.  It’s time that most of us don’t have since we are expected to work at least 40 hours a week and many of you not only work full-time, but also have children to care for. (Sidenote: How one works full time and also cares for children is a total mystery to me. You deserve lots of awards and a hero cape, etc.) Personally, I believe our system is very broken. Working 40 hours a week is not healthy. Sure, I know many of you work 50+ hours per week and you’re probably thinking I’ve got it made with my 40 hour job, but I think it’s time we get more realistic about what we deem normal. Anyways, that’s another discussion for another time.

Back to living with Lyme post-treatment:

My body has not appreciated my new schedule. Some old symptoms have crept in this month. I have a strange rash on my neck again, my joints hurt (hips, knees, ankles), my muscles are achy, and I’ve had a few nights of consistent drenching night sweats. Granted, these symptoms have been minimal and not nearly enough to hold me back, but they are gentle reminders that although I have gone through treatment and am successfully in what I would consider remission, it is a state that must be maintained.

I often have folks ask me, ‘so, have you recovered 100%? Are you back to your old self?’ It’s hard for me to answer those questions. It’s not straightforward. Yes. I have recovered, meaning I have a “normal” life again. But no, I am not back to my old self. I can’t eat whatever I want, I can’t drink alcohol regularly, I have to sleep WAY more than most everyone I know, I have to manage my exercise differently (can’t go all out), I can’t keep up with people that I used to keep up with on my mountain bike pre-Lyme, and I will never be a workaholic, because my body won’t let me. Basically, I am, as my partner lovingly says, a delicate flower. I’m not so sure about the flower part, but delicate, yes.

It’s hard for me to accept this fact sometimes. I want to be able to go back to my old self and be somewhat indestructible. Sometimes I feel ashamed at the fact that I struggle to work 40 hours a week. Sometimes I feel insecure about going to do things I love like mountain biking or riding my dirt bike because my endurance is less than stellar. What I am realizing is that these insecurities are things that everyone can relate to with age. You don’t have to go through Lyme disease to watch your life change in ways that you may want to resist. I live most days not gripping and resisting these changes, but some days not so much.

The point of this post is twofold. First: once you are through treatment, the work is not over. Second: to all of you out there expecting to come through Lyme Disease treatment as the person you were before you were infected, you may be disappointed. You may be disappointed that you won’t be able to physically or mentally perform the way you could pre-infection. It seems many of you have taken my progress to mean you will be the person you were before Lyme Disease, and I feel I need to be honest and say that is likely not the case. But don’t let that be discouraging. You may not excel in physical ability and you may not become president, but you will, without a doubt, learn so many incredible things about yourself that you will live a life more fulfilled. This post isn’t intended to be negative. Just honest. When I first started treatment, a fellow-Lymey said to me, “You have to let go of who you were before.” That remains the best advice anyone has ever given me.

(Fine Print that isn’t actually fine print: This of course is my experience and seems to be the experience of many Lyme patients I know. HOWEVER, there are some professional athletes who have gone through treatment and are back to 100%. It doesn’t mean my experience will be your experience, but discussions with several Lyme patients recently regarding my recovery has prompted to me to be honest about what things look like for me post-treatment. That is all.)

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Quick Update

It has been about 7 months post antibiotic therapy and I am happy to report that I have remained well. I am back to working full-time and even traveling for work some with no ill effect. I have continued acupuncture treatment and feel that it has helped keep me healthy (thanks a million to Ash Goddard of Nine Needles (http://www.nineneedles.com). I have been able to ride my bike and even learn how to ride a dirt bike. I’m having a lot of fun and I’m super grateful. Some folks have been wondering about my progress, so I just wanted to share the good news. I’m still in remission and loving it.:) There is hope for those struggling! Hang in there my friends. Love, Lyndsey

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Post-Treatment Paranoia

It’s been about two months now since I stopped antibiotic therapy for Lyme. Up until last week, I have had only confidence in my decision that I was finished with treatment. I had run out of money for treatment with my doctor in Seattle and I figured you have to draw a line in the sand somewhere. So I did. And I felt good about it.

Then, the ringing in my left ear came back with a vengeance. At first, I thought, “gosh, my allergies are really bad this year.” Because they are. Then my teeth started to hurt so bad when I brush, that I had to stop using my electric toothbrush. TMJ pain started up again also. This is when the fear crept in. It was a slow creep in the beginning. I was able to talk myself off of a cliff pretty easily. Then, I went and did a mountain bike trip with friends on one of the San Juan Islands and the fear got pretty darn loud. I had been having intestinal distress for about three days and that day wasn’t any different. On top of that, I started to get some brain fog. Then, I bent over to pick up my hydration pack off of the ground and completely strained my shoulder for no apparent reason. Overall, I felt weak and unhealthy. However, I was still able to ride just fine. I was insanely tired the next day and found myself sitting around the house all day despite sunshine and warm temperatures outside. Then I really started to worry. It was happening. I was getting sick again. My worst nightmare was coming true. What would I do? How would I pay for more treatment? How could this happen?

Fear is an ugly thing and although some level of fear is healthy, when you reach the paranoia level, it isn’t. I was there. I could feel myself holding my breath and my stomach getting tighter. Lyme Disease was the absolute hardest thing I ever had to experience and I want so badly to never have to go through that again. My brain latched onto every small pain or discomfort in my body and the sense of dread was overwhelming. Then, I woke up the next day with a cold/flu. That was it. That’s why I had been feeling tired all weekend. I was coming down with a cold. No big deal.

So now I sit here mouth breathing, and contemplating my future and hoping that I have the courage to move forward without fear, since the concept that we can predict even the next moment is ludicrous. To understand that even if I DID relapse, I could find a way to get well again. I don’t want to live in fear of this illness. I want to practice calm abiding for whatever comes my way.

Letting go is hard.  But I am trying. For now, please excuse my paranoia.

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The End of an Era

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As of last week, I am officially off of prescription antibiotics. My symptoms have been very minimal for the past 6 months or so and my doctor and I decided it was time to try to stop antibiotic therapy. There really is no set time to stop antibiotic therapy when you have Late-Stage Lyme Disease, since there is no test to confirm that you are finished. There are no guidelines for appropriate timing of cessation of antibiotic therapy, but Dr. Richard Horowitz, an east coast lyme-literate physician, suggests in his book Why Can’t I Get Better? Solving The Mystery of Lyme and Chronic Disease ending antibiotic therapy approximately two months after symptoms have completely stopped. If you haven’t read that book, go buy it here: http://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400

Dr. Joseph Burrascano, another east coast lyme-literate physician says the following in The International Lyme and Associated Diseases Society Evidence-based guidelines for the management of Lyme disease:
“The decision to discontinue antibiotics should be made in consultation with the patient and should take into account such factors as the frequency and duration of persistent infection, frequency of recurrence, probability of refractory Lyme disease, gains with antibiotics, the importance to the patient of discontinuing antibiotics and potential for careful follow-up.The ideal approach would be to continue therapy for Lyme disease until the Lyme spirochete is eradicated. Unfortunately there is currently no test available to determine this point [25]. Therefore, the clinician must rely on the factors outlined above to decide on the length of antibiotic therapy for chronic Lyme disease.”

If you have not read The International Lyme and Associated Diseases Society Evidence-based guidelines for the management of Lyme disease, I suggest you do that here:

http://www.ilads.org/lyme/ILADS_Guidelines.pdf

Have I been symptom free for two months? Maybe. I say maybe, because I haven’t had any of the “classic” Lyme symptoms that I used to have regularly in about 6 months, such as: joint pain, muscle pain, heart palpitations, dizziness, memory loss, persistent headaches, brain fog, fatigue, or stinging nerve pain with numbness and tingling. However, something than remains is occasional flaring in my feet (described here), ringing in my ears, and exhaustion from activity. Now, when I say exhaustion from activity, I don’t mean exhaustion from walking around the block, which is how it used to be. I mean I still have to be careful with how much activity I do, because it will sometimes (not always) make me have to sleep on the couch for the rest of the day if I’m not careful. My body has been through a lot, and honestly, I think I am probably more active than the average American today. So, sure, I get tired after I ride my mountain bike for two hours, but so do a lot of people. I’m not saying this in a bragging way. I’m saying this to put things in perspective. I may never be able to be the athlete that I was before, but I am grateful for what I am capable of now. I know there are so many people out there who would love to be as mobile as I am, so no complaints here.

What about my remaining symptoms? Well, honestly, I don’t know if those remaining symptoms are Lyme related or not. It’s hard to say. There is a chance that they are autoimmune related. It makes total sense to me that autoimmunity could be triggered by chronic infection. It could also be remaining infection, but there’s only one way to know and that is to try to stop antibiotic therapy and see if my body can get things under control on it’s own. It’s a scary proposition, since I DO NOT want to be in the condition that I was in three years ago, but my doctor is not far away and if I had to start therapy again, I would have to find a way (my funding for treatment is now gone). My outlook is pretty positive, however. I feel confident that my body is getting stronger and stronger and that I can manage to remain in remission on my own with a clean diet, plenty of sleep and rest, holding a low stress lifestyle, and easing myself back in to exercise and adventure. Am I scared? HECK YES! But, I also feel ready. If you want to send a prayer of strength and hope out there for me, it would be appreciated!

It feels incredible to be in the woods playing again. My hope is that those of you still suffering can find your way to fun again. Be patient. Be open. Be dedicated to your recovery. Be hopeful. Let go of what you can.

Thank you to all of you who have supported me through this journey. I am forever grateful.

So much love,

Lyndsey

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Letting Go and Giving Thanks

Letting go is hard

When I was diagnosed with Late-Stage Lyme Disease 3 years ago, one of the first things that I was told by a fellow athlete with Late-Stage Lyme Disease was, “You have to let go of who you were before this illness”.

Although I understood cognitively why they would say that, my mind refused to believe it. Prior to getting sick, I was an athlete with lots of hopes and dreams. I enjoyed competition and pushing myself to always improve. Be faster, learn new skills, or race in a harder category. There was a huge sense of accomplishment I got from racing and being fit. Of course, the shadow side of this was that I placed entirely too much of my self-worth on performance. I think that’s why it was so challenging for me to hear that individual say, “You have to let go of who you were before this illness”. The person I was before this illness was all I had ever known. Slowing down and becoming something other than competitive seemed like it wasn’t an option. It wasn’t something my nervous system knew how to do. Slow down and just enjoy whatever you are capable of even if it’s not your best? That didn’t make sense.

So, I went into treatment with the mindset that I was going to beat this thing and have 100% recovery. I was going to do what I had done before. I was not going to let go of that former life. As treatment started, things were really rough. I was able to endure all of the sick nights and pain, because I was driven. I had an end goal and I knew what it looked like. This was not it. I kept going. I had a standard of life that I measured my days against. As the years passed in treatment, I began to improve. My brain started functioning again and my energy started coming back. The shooting and stabbing nerve pain began to subside. But even with all of that incredible progress, I still was not back to 100% of what I was before and I remained driven.

I would say, for the most part, that drive to be back to 100% was helpful in my recovery. It has been the reason for me not giving up when things seemed pretty hopeless. It has been the reason for me not just fading into this illness. For a while, it seemed like maybe I wouldn’t need to let go of who I was before. That person was wrong, until I realized they were right.

Lately, I’ve been able to ride my bike again and start doing more strength training than I have in about 4 years. Some days are easier than others. I am not even remotely close to the kind of mountain biker I was before, but I am functioning at a level that so many Lyme patients could only dream of. But that standard of my pre-Lyme life was still my measuring stick for success. So, when I went for a mountain bike ride with some friends a couple of weeks ago and had a familiar episode of intense muscle fatigue and soreness about 20 minutes into the ride, I became angry. So frustrated that it made me cry. My body was still not on board with my 100% recovery plan and that’s when I realized I needed to change my measuring stick.

We all have to change our success measuring sticks at some point in life; be it through age, illness, or any other transition. Going through Late Stage Lyme Disease is a massive transition that I was refusing to see. I wanted to be unchanged by all of this and return to the person I was. But that is not the way the universe works. We all know that change is the only constant, but it remains a scary proposition. Yes, I still have symptoms; though they are dramatically decreased to the point of being just a nuisance for the most part. No, my body cannot tolerate intense exercise, lack of sleep, high stress, alcohol, sugar, or dairy the way it used to. Read back through that list. Can your body tolerate those things as easily as it used to? Probably not, even if you don’t have chronic illness. We are animals. We age. We get sick. We die. It becomes necessary to change our perceptions of who we are and how we measure success over time. I am grateful for the drive that has pushed me through the hardest parts of this illness, but I am becoming acutely aware that it is time to let go.

Let go of who I was. Let go of the idea of 100% recovery. We are not the people we were 10 years ago (thankfully, really). Embrace the time I get to play outside in the woods on my bike as a gift instead of a chance to perform. Let go of judgement and anger when symptoms again rear their ugly head. Embrace illness as a side-effect of LIFE. Perhaps the most important: allow myself room for mistakes in this transition.

I am so thankful that I have had the opportunity to recover as much as I have. I am so thankful that I have had the support of such a loving community in my recovery. I am so thankful that I have the capacity to change. I look forward to getting to know the person that I am becoming.

Happy Thanksgiving! I love you all!

~Lynds

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For those wondering about Dr. Smith and Lymestop

Hi folks! There are a lot of you out there asking questions about Dr. Smith and his Lymestop treatment. I just received the message below from a fellow Lyme patient and thought you would be interested in joining this group for more information.

“I started a Facebook group for LymeStop support and information with Dr. Smith’s blessing. I’m hoping those of you who are considering it, or who have already done it, will join. Just look for “LymeStop Support and Information” on Facebook and ask to join. We are a group of patients of Dr. Smith, and potential patients. We’re also discussing other magnetic therapies. Dr. Smith has and his office staff are NOT members of the group, so everyone can speak freely. Please check us out and join. I was hoping Lyndsey would join too, as we could use more people who’ve done the treatment a while ago, not just those of us who were treated recently. I was there with my daughter at the end of July and there are several others who were treated in the last few months. Please join us.”

The link for the group is here: https://www.facebook.com/groups/336036643214013/

 

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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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