This blog is dedicated to my personal story and attempt to solve an undiagnosed and mysterious condition I have experienced over the last few years. I would like to welcome you to my nemesis: severe and chronic inflammation in one specific area of the body – the knees. It started with swelling of one knee and then a large effusion on the other knee appeared shortly afterward. There were no major injuries or signs of trauma. It just happened suddenly one day – I heard a loud pop in my left knee while kneeling down in the bathroom while cleaning the floors. Before that incident, I felt perfectly healthy, was extremely fit, working out 6 days a week, eating “healthy” food and getting a decent amount of sleep. Soon, more related autoimmune symptoms began so I sought out many doctors and took many prescription medications including long-term use of Prednisone and other anti-inflammatories, but they all made my condition worse.

Looking back, I feel like my body was constantly getting closer and closer to a breaking point. I thought I was healthy, but I realized after years and years of antibiotics (chronic sinus infections multiple times a year for at least 15 years) my digestive system was most likely deteriorating. While bodybuilding and exercising daily, striving to build lean muscle and lose fat, I ate meals of only chicken breasts, brown rice or whole grain breads and a few vegetables every day, all day. Many months I would eat only these types of foods – up to 6 chicken breasts a day! At the time I knew very little about antibiotic-laden meats and only cared about the fat content. I also didn’t realize the importance of organic or chemical-free fruits and vegetables. In between those high protein, high carb, low fat meals, I drank at least 2 whey protein shakes daily. I did gain muscle and lose fat during those days. At 6’1″, 195lb and less than 10% body fat, I was convinced that was the perfect way to eat. Little did I know, my insides were slowly breaking down, and was developing a leaky gut from the massive quantities of irritating chemicals and refined foods. I felt healthier than ever and yet my body was malnourished. I didn’t eat many whole foods at the time, so to digest all those meals, my body was instead pulling nutrients from my tissues and bones.

So how did I get Lyme? To this day I do not know. I have clear memories of ticks being removed from the back of my neck when I was a little boy, but I’ve never noticed a bullseye rash or any other signs of infection. I grew up in Iowa, visiting Missouri and Wisconisn frequently so there’s a strong possibility I was bitten, but my immune fought off any infections for as long as it could. I strongly believe it was due to long-term use of antibiotics, poor eating habits, excessive stress from work and acute illness that contributed to the perfect storm. Borrelia may have been in my system for months or for years, but regardless, it waited for the right moment to strike. In the winter of 2011, after going down the path of various possible diagnoses such as rheumatoid arthritis, anklosying spondilitis and many others, I started to become even more ill, feeling like I had the flu every day, making it difficult to get out of bed each morning. In addition to my swollen knees, I suffered from night sweats, headaches, stiff neck, tremors and joint pain every day.  I lost around 40lbs and felt so weak I could hardly walk up stairs or get up out of a chair. It was during this time I turned to my only hope. God. I prayed and prayed. Then, in an odd set of circumstances many answers fell into place all at once.

With the help of an LLMD (Lyme Literate Medical Doctor), I took a Western Blot test and it came back CDC positive for Lyme. The previous year I tested negative with the ELISA test through Mayo Clinic labs. At the time I took the Western Blot I also tested positive for several co-infections such as Bartonella, Chlamydia Pneumonia, Mycoplasma and HHV6. My CD57 was low (at 24), as were testosterone and vitamin D levels. Because I was tired of all the side effects and felt I had a current flare of candidiasis from the Prednisone and other medications, I decided to hold off on treating with long-term antibiotics. To this day I still have not treated my chronic Lyme with antibiotics.

I believe our bodies were designed to heal and so I’ve started an investigation into the cause of my symptoms. After completing a strict 3-month healing protocol (eating nothing but raw vegetable green smoothies and a few berries, bone broths, probiotics, enzymes), I started feeling better and a lot of my symptoms alleviated so that’s when I decided to continue learning about proper nutrition and healing the body with food. I’ve since quit my full time job as a web designer and now freelance part-time while going back to school to get a Masters degree in nutrition. I’m still learning, but some day I hope to help those who suffer from chronic illness, whether it’s related to Lyme or not. Along the way, my goal is to reach out to those who may also have similar chronic health conditions and provide information that I find or clues to an unsolved mysteries.

  • Amrita

    OMG, your blog is very close to what I am going through for the past few months…I am 45 years old and just the thought I have to deal with this annoying stiffness and pain is scaring the you know what out of me. Please keep exploring and writing, we’ll get there one day where there will be an answer will free us from pain:)
    Thanks!
    Amrita

  • http://diagnosisunsolved.com swollenmystery

    Sorry to hear you’re having similar issues. I can relate to it being scary, especially if you haven’t had it long. Hopefully by documenting all the treatments I’ve tried so far and continue to try will help you determine if any of them will work for you. I’m not out of the woods yet, but I have some very hopeful things I’m looking forward to in the next few weeks.

  • http://myseveralworlds.com Carrie

    I suffered for over a decade with knees that would suddenly swell with no provocation; my shoulders would get painful and hard to move around, at times it was difficult to put weight on my toes, and I even get painful and chronic ear infections. I was finally diagnosed with Ankylosing Spondylitis two years ago, and I found out that all of these symptoms are related. I was in remission for almost eight months, but I’ve just come out of it and I’m experiencing painful swollen knees almost every day. My knees are slightly swollen today, so I was searching for answers in regards to whether or not I should exercise during a minor flare. My search results led me here.

    Further reading revealed that you’ve just tested positive for Lyme disease, which completely baffles me after reading through your posts. It amazes me that so many auto-immune disorders have similar symptoms!

    I’m currently exploring detox diets as a way of improving my intestinal health, but there is so much conflicting information out there.

  • http://diagnosisunsolved.com swollenmystery

    You’re so right. So much conflicting info out there it’s hard to decipher what’s the best option to pursue. I just kept coming back to the feeling that it was indeed bacteria in my joints causing all the problems (my rheumatologists even always confirmed the fluid they aspirated was full of bacteria) so that’s why I pursued lyme. A lot of my symptoms so far have improved since I started the detox. And the purpose for me of the detox is really to heal my gut, where I believe a lot of the problems have stemmed, including having a weak immune system which can cause all sorts of trouble. I’ll keep posting on how things go. Don’t give up on your search.

  • http://mpkb.org/ Ron

    Yes, the solution exists, but it is not a quick fix. Check out mpkb.org as well as http://www.marshallprotocol.com/view_topic.php?id=13660.

  • Raven

    Nice blog. Good tips about the green smoothies. Have you seen this site? http://www.cpnhelp.org Before I found out I had Lyme, I found a doctor who treated me for Cpn with the antibiotic protocol developed by Dr. Charles Stratton at Vanderbilt University. I’m about 98% well at this point. Working with a naturopath who is using the Byron White herbal formulas. At some point, I has the same swollen knee problem only it was on one side.

  • http://diagnosisunsolved.com swollenmystery

    Interesting.. Thanks for the link! Did you notice which treatments helped with the swollen knee? ..antibiotic protocol or herbals? I’d love to hear more about your recovery.

  • Rita

    I just came across your blog for the first time, and wanted to say a quick hello. Your photos featuring the wooden model are superb, and so are your blog entries that I’ve read so far.

    Having read “Cure Unknown” by Pamela Weintraub, you are no doubt well aware of the controversy surrounding Lyme. Unfortunately many of us have lived through year after year of misdiagnosis, and I can only hope that your recovery is as short as possible.

    If you are interested in the latest scientific developments and the status of the controversy, I would recommend the blog “Camp Other”. The author hasn’t been posting much lately, but there is a wealth of information there. Should I come across something more specific to Lyme arthritis and/or inflammation, I will certainly let you know.

    I’m really am sorry that you have Lyme disease, but I’m glad that you finally have a diagnosis and therefore hope for recovery. After close to a decade with sometimes debilitating neurological and other health issues, I too was happy to have an answer and renewed hope that I might one day be able to work again. My diagnosis was in August 2010 and I’m still working hard to restore my health by any means possible. I’ve made great progress, but I realize that patience is required for those of us diagnosed in the later stages of Lyme disease — and especially when co-infections involved.

    I wish you all the best and look forward to reading more of your blog entries.

  • http://diagnosisunsolved.com swollenmystery

    Thanks, Rita, for the compliments and the blog resources! I’m always looking for new information so I will definitely check out that blog. Glad to hear you have a path to follow for treatments as well. Have you found any treatments that work better than others?

  • Charlene

    Hello, would you be able to give some more details of the detox diet you tried? I’m 30 & have had a swollen knee for 2 years, with every unsuccessful test under the sun! I too eat alot of protein & wholemeal pasta, & whey shakes, which I thought was good. I have IBS too so think changing my diet is worth trying. Thanks! Charlene

  • swollenmystery

    Hi Charlene,

    I’ve tried several detoxifying protocols but they have all been custom-tailored to my particular symptoms and needs based on my own body so I can’t say that what has worked for me will work for you. It’s a good idea to work with a nutritionist or physician who understands the digestive system and can take a look at what you are eating along with your symptoms. Having digestive issues like IBS along with swollen joints could be a sign of a leaky gut or problems anywhere along the digestive tract. Most of the diet/protocols that have helped me the most have concentrated on removing hard to digest foods like grains and dairy. I also eliminated refined foods and started eating a primarily whole foods diet – lots of vegetables and bone broths to get the nutrients I needed while being easy to digest. The key is to find good sources for your food like fresh, chemical free vegetables and pastured, grass-fed beef or antibiotic free chicken. I would recommend reading into a few diets that have similar approaches to this method such as GAPS, SCD and Paleo. Again, it’s best to have someone help you figure out where to start, take a look at your individual case, and you can go from there. I recommend the guys at Life Fitness Academy for nutrition consultation. They helped me get where I needed and gave me a lot of help I could use on my own. See their link in the sidebar on this blog. Hope that info helps.

    -brad-

  • dianne

    Hello, saw you on you tube while exploring for comfort for my own knee.  Your writing is very helpful, thank you for your work.

  • Hopenewman

    Can i ask if your knee swelling was cyclical? Meraning it reappears evry ten days or so. maybe goes away for a couple months then comes back? I ask because i have similiar symtoms- got lyme diagnosis and treatment and it came back..

  • swollenmystery

    My knee swelling used to increase and decrease more than it does now. When this all started happening, first it started with one knee only, then both knees started, then they would go back and forth. It does seem like they now are both pretty swollen all the time, although some days one may be a little more than the other.

  • swollenmystery

    Thanks, I hope I can provide some helpful information, even if it’s just in the stories about things I’ve tried or done to seek out strengthening and healing for the knees.

  • HuterGirl1

    Gosh, your story sound very familiar to me and my partner. He was seriously ill with Lyme and I developed Rheumatoid Arthritis around the same time. I was later treated for Lyme as well since, as you probably suspect, it can be “shared”. 

    Now several years later, after being on antibiotics for over a year, my gut is leaking and I’ve developed food allergies, plus I have yeast overgrowth. 

    I have tried many diets–raw food, vegetarian, then vegan, then a complete flip to paleo–but none have gotten me to a good place, and I have consistently gone down hill. 

    However, I am determined to control RA flares with my diet and NOT drugs, so I continue to research. My next stop is fasting, although I have low blood sugar issues and am concerned about doing that. And I am doing an elimination diet. I’ve already cut all gluten/dairy, sugar, coffee, etc. Nothing yet, but it has not been that long. I think nothing will work until I heal my gut, and so I’m doing bone broth, L-Glutamine, fish oil, probiotics, and various supplements. Only time will tell.

    Thank you for sharing your story.

  • swollenmystery

    Sounds like youv’e tried a lot of similar approaches to treating your RA. It’s nice to hear you’re working on supporting your gut. That is a huge step. I would love to hear more later down the road as you see how it works out for you.