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Patience and Waiting for Healing

Posted on by swollenmystery

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One might think with all the detoxing, eating so well and anti-bacterial treatments, my pain levels would be great. Unfortunately, I can’t yet proclaim I’ve been healed from Lyme disease or my co-infections. But I can attest to gaining patience and obedience when it comes to waiting for healing. You might ask How do you gain patience when every cell in your body feels like it’s under constant attack? There are several things that have helped me get through the last few months.

  1. Books – My good friend Tim at Life Fitness Academy recommended a book called Suffering and Sovereignty of God. To my great surprise, my wife already read the book this year so we had a copy in our library. It took me a while to start it but once I did every time I had to stop I couldn’t wait until the next time I could continue reading. The authors discuss their own sufferings and I can relate to their questions and what they went through. There are so many Scripture references that it made me seek out those passages, read them, and think about them. When I read about Joseph’s suffering in the Old Testament or Paul’s suffering in the New Testament and realize suffering has been around for such a long time, or that God can allow suffering for a greater glory we don’t understand, my short life comes into perspective and it helps me be patient.
  2. Family – Often I overlook this one, but I gain so much patience by just watching those around me. My mom has taught me patience without ever saying anything. When she was only a few years old she unexpectedly caught the polio virus, leaving her with partial paralysis and the use of only one leg for the rest of her life. Growing up with a mom who always walked with crutches and never complained once to her children is not only astonishing, but it helps me see that if she can get through it, I can have more patience for my suffering. Even if I suffer the rest of my life, I still had 30 years more mobility than she ever had. To this day, my mother has more energy and spirit than any other woman I know at her age. Who would think someone with a lifelong disability could always be on the move? She’s an avid shopper and I often joke with my brother or sister about how mom can out-walk us all. It’s humbling to think that she raised 3 kids, went back to school, and took on a new career later in life while patiently realizing she could not physically do what most moms do.
  3. Knowledge – If this disease has taught me anything, it’s that there is hope. Perhaps not for a cure in the short-term, but hope that my Lyme and co-infections will go into remission. Hope that others with Lyme can experience relief. Hope that others with similar auto-immune diseases can feel like they are making progress toward healing. Reading so many studies and articles, and listening to doctors and specialists has shown me that there are a lot of conflicting reports out there. It can be frustrating sorting through what is right, what is wrong, and what we just don’t know. However, every time I read an article or listen to a speaker talking about how they have seen progress with a patient or have experienced relief themselves, I gain a little more hope. Along with that hope I gain a little more perseverance. And with that perseverance I acquire a little more patience.

Lately I’ve realized how much our society trains us for the quick fix. “Take these pills and come back in a month”. Who doesn’t want the most immediate path to feeling better? I’ve fallen right into the trap of impatience and doubt when it comes to healing. Maybe that statement should be, “Eat like this for a couple years, give your body the time it needs to heal, and don’t worry about ever having to come back”. That’s the kind of healing I want. One of the hardest things to deal with when going the natural route is the patience and discipline it takes to get through to the end and not settling for the quick fix. If taking that route, whether it’s 1 year or 10, gives my immune system a chance to get back on track, I’m opting to be patient for a little while longer.

What Does Detoxing From Lyme Disease Feel Like?

Posted on by swollenmystery

If you’ve ever heard someone say, “I’m doing a detox” or “I’m on a detox protocol,” you may wonder, what does that feel like? Perhaps you’ve seen people downing an entire glass, or better yet, mason jar of green liquid sludge for lunch. Or maybe you’ve been brave enough to try a shot of wheatgrass on a dare.

Detoxing can be done by a number of methods. Baths in epsom salts or ginger, eating blended raw green vegetables, herbs, saunas, and exercise can all assist the detoxification process. Most of the time you’ll probably hear about these things helping you to feel better. But can they make you feel worse? They do certainly help to make the body feel better eventually, but unless the process is moderate, detox can be immensely painful. After I chose to treat my chronic Lyme naturally, I decided to continue searching for ways to eliminate toxins from my body.

You might wonder why I continue to pursue detoxification when I should be able to detox for a period and then be free and clear. The process of killing bacteria in your body can flood your system with toxic, dead organisms. With persistent bacterial infections, particularly Lyme bacteria, which love to change forms and hide in tissues, that toxic die-off is in a constant cycle. I sometimes picture walking through a battlefield with millions of dead soldiers scattered all across the landscape left over from a massive war the day before. Detoxification is like the clean up, so your internal landscape can once again be clean and flourish with life. Similar to battle, it’s the casualties that hurt.

Recently I’ve been feeling effects of my detoxing more than the past. To be blatantly honest–it feels awful! As the day nears nightfall I usually feel heavy and fatigued. I try so hard to avoid movements like turning my head or twisting my torso because my muscles ache. My skin aches and is sensitive to the touch. The aches are so deep I can feel them in my bones. Getting up from sitting feels like my upper body weighs 900 pounds and my legs beneath my knees are hesitant to move for fear of being crushed under the pressure. My entire body feels the need to stretch, but moving only causes a sense that my limbs will tear from their joints. I wake up at night sweating as my body tries to crank up the heat and move toxins out through my skin. Each morning I get up early because the aggravation near my liver and kidneys is too painful while laying in bed. If you’ve ever gone for a month of not exercising and then did a gruesome 2-hour workout, you know the feeling of soreness you get a day or two later. When your body is laced with millions of toxins and dead pathogens it feels like that muscle soreness through your entire body is multiplied by 10.

So what have I learned from all this? Detoxing should be carefully planned and it’s best to proceed slowly in small doses, no matter which method you choose. It also helps to choose one method at a time. My most painful experiences have occurred while zapping with electromagnetic frequencies, drinking green smoothies, taking multiple herbal tinctures, and exercising. I constantly strive to find ways to kill spirochetes or harmful bacteria but I also catch myself realizing that the body needs time expel all those unwanted organisms and chemicals. If I can remember to be patient, I might feel a little better.

Sweating Through the Gears

Posted on by swollenmystery

With chronic Lyme disease, there are some days you get to the point of frustration where you begin to doubt your treatments and wonder what is working and what isn’t. Today is one of those days. No, I take that back. This month is one of those months. Consistently, I see clues of healing: better, consistent bowel movements; more fluctuation in my knee swelling; normal weight gain; and overall feeling of more strength. Yet I continue to debate whether I’m taking a step backward or moving forward, not knowing whether the increased pain, fatigue or swelling is due to herx reactions and bacteria die-off in my system or my infections getting out of control again.

Through the ups and downs, I feel like I’m learning. It seems as if my lymphatic system is what’s holding me back. I’m beginning to wonder if my lack of movement (due to aches and fatigue) is a double-edged sword. Could a lack of exercise stall my lymph nodes and cause a backed-up system, creating more toxins to spread, and therefore more discomfort and pain? One of the hardest things for me to do over the past few years has been to sweat. When I do sweat, I feel better and see changes in my knee effusions afterward. When I work out, or have my knees or neck massaged properly, I tend to see more change in the amount of fluid in and around my knees. This leads me to believe I need to actively coax my lymph nodes to move the toxic waste.

The more I learn about the lymphatic system in our bodies, the more it fascinates me. Not only does it aid the immune system by destroying pathogens and filtering waste, it removes dead blood cells, cancer cells, toxins, and debris. On top of that, it works with the circulatory system transporting oxygen, nutrients, and hormones to cells that make up tissues in the body. How could I not want to support such a brilliant system when all I want to do is kill off Lyme spirochetes and kick bacterial infections out the door?

Recently I found a great little mini-trampoline on craigslist and started rebounding daily to get my lymphatic system moving. My wife and I also bought a couple of used bicycles to get some nice, low-impact exercise into my daily regimen. I was pleased to find out after trying so many pain-inducing, joint-swelling exercises that bicycling actually felt ok. And I could more easily work up a sweat without taking on the full weight of my upper body. Usually it takes a few minutes to get warmed up but I try to keep the RPM’s high and the gears low so I can keep my legs and joints moving with not as much effort. In fact, bicycling is the one form of exercise I’ve noticed that often does not make my knees swell any more than before a ride.

Initially it hurts to rebound. It hurts to ride a bike. It even hurts to walk down stairs or move from a standing position to laying on the floor some days. But that pain is usually from lack of moving. And I do feel less pain once my body has warmed up. I feel like moving in general is one of the most important things I can do to convince my body to expel all the toxic organisms that want to spread. So for now, my goal is to find as many ways to exercise and to sweat. Even if I have to wear 3 sweatshirts and bike for hours, it will be worth it.

Healthy Eating and Healing While Traveling

Posted on by swollenmystery

Since my Lyme Disease diagnosis and finishing 3 months of strict detoxification, I’ve been extremely careful about what I should and shouldn’t eat. So far I’ve made a lot of progress healing my gut and reversing damage done to my body from years of medication. However, I believe it will still take years to recover the health I’ve lost. My knees continue to swell, but the effusions now come and go. The left and right knee tend to flare up independently now as well. It’s discouraging but I still consider this progress after years of nothing but constant swelling on both sides.

It’s been 6 months since starting the detox protocol. Most of my meals now consist of local pastured eggs, whole sprouted or soaked grains, wild salmon or sardines, local grass-fed beef and pasture-raised chicken. I try to keep 70-80% of my diet to vegetables or fruit, all organic, local if I can find it, or chemical free. The downtown farmers’ market and our summer vegetable CSA have helped immensely with that goal. Some days I find it strange to look back and notice that my wife and I prepare only 2-3 meals a week that actually contain meat. I’m now gaining weight (the good kind—lean muscle) and eating more vegetables than ever! I also avoid processed sugar like the plague, allowing only small doses of sucanat, local wild honey, or other natural sweeteners like dates or fruits. The same goes for any processed or packaged foods actually. If it comes in a box or plastic wrapper I proceed slowly with great caution, then peer skeptically at the ingredients list to make sure it has less than 6 and all of those are recognizable as real, whole foods.

While my routine may sound obsessive, it’s helped guide me further to my goals, slowly but surely. The biggest problem for me about living this highly nutritious counter-culture lifestyle is traveling. I love to see family. I love to visit friends. And I take great pleasure in seeing new parts of this world, whether driving or flying. But I confess I get a little stressed out when it comes to deciding what to eat on the next trip. At first I dreaded eating while away from home, but this summer forced me to figure out ways to continue to eat healthy while out of my comfort zone. In just the past few months we’ve driven to Wisconsin several times, visited family and friends in St. Louis, Nashville, Branson, Colorado Springs twice, and even Montana! Sometimes we stayed in hotels. Other times we crashed with family in an extra bedroom. And other times we shared a condo. This meant each trip we needed to decide how to prepare meals, whether it was in a hotel with just an ice-filled cooler, a mini fridge, and microwave; a condo with full kitchen appliances; or a family’s house where we could cook together.

Here are some ways to make life easier while traveling, especially when you have health concerns or trying to heal your body with a food detox program.

If possible, bring the Vitamix (or any blender). This is mostly if you want to keep a detoxing meal plan and blend most of your meals. It is helpful, but only if you aren’t flying to your destination where luggage space is limited. I learned early in my detox protocol from the guys at Life Fitness Academy how valuable a good blender can be. And it helps when you’re not the only one who travels with a giant kitchen appliance.

Map grocery and health food stores at your travel destination. I got a few laughs when we traveled this summer from Des Moines to Kansas City to Branson to Nashville to St. Louis and back. We had a nice connect-the-dots map of each Whole Foods location along our journey. If visiting smaller cities or remote locations, do a quick google search for the name of the town and terms like local, sustainable, grass-fed, pastured, organic restaurants or stores. Surprisingly we found a few gems while in Bozeman, Montana, like the local Bozeman COOP and Blue Planet Natural Grill in Omaha, Nebraska while driving across I-80 to Colorado. Happycow.net sometimes has a few decent listings for health stores and restaurants too.

In a pinch, bring emergency foods. Packing pulled meat (courtesy of Wallace Farms grass-fed beef ribs) sandwiches on easily-digested sourdough with chopped vegetables and fruit saved us a few times while trekking 18 hours on our trips to Colorado and back. Most of the time we would bring a large glass jar of milk kefir, tea, kombucha and a few jars full of freshly-blended green smoothies. (When I knew we wouldn’t have time to blend or it just wasn’t feasible in the hotel, I’d bring a few pre-made smoothies made the night before our trip.) Normally I wouldn’t recommend blending too far in advance because the longer the blended vegetables and fruit are exposed to air the faster they oxidize and lose their nutritional value. But as long as you keep them cool and fill your containers so there’s no air inside you should be ok for a couple days. Most of my green smoothies still tasted good after 2 days, but I wouldn’t go longer.

Pack for your family and friends too. If it’s hard to decide where to stop and eat when you have traveling companions, pack along some sandwiches and snacks for them too. It helps if you bring some foods that appear normal and not just kombucha or sardines. While you’re prepping for the trip, make a few extra meals that you can share. Maybe you can convince them to start eating healthy too. My wife and I found that this works when staying with family and friends too. We offer to prepare the meal and shop for food. Or ask to make a salad to share with a home-cooked meal if eating at someone’s home. On a recent trip we had dinner at a friend’s home, made a quick homemade spelt pizza dough, and quickly threw together a meal. I enjoyed an organic, all vegetable pizza with goat mozzerella, while everyone else added more traditional pepperoni and sausage. It was fun, not too stressful, and easy for everybody.

If driving, bring your own easy-to-digest foods. Bubbies pickles or sauerkraut are tasty and easy to eat (if you’re too busy to make your own lacto-fermented veggies like me). Sardines also work well if you need a little meat with all those blended vegetables. They’re quick to eat and rich in good fats and protein. Warning! If you take sardines, be careful to eat them as far away from people as possible. I love them, but quickly realized most people don’t love the smell. GT’s Kombucha is also usually available at most healthy grocery stores and even a lot of supermarkets that have health sections. The probiotics in raw kombucha can help greatly in digesting other not-so-good foods along your trip and they taste so good.

If flying, pack a small, carry-on size cooler or lunch bag. This might sound intimidating due to the TSA guidelines and ban on bringing liquids or ice. But there’s still hope. Freeze some fruit like grapes the night before and throw them in instead of ice while on the plane. I successfully made it through security with frozen fruit, a few sandwiches, some chopped vegetables, and a small container of probiotics while on our plane trip to Montana. If the fruit thaws quickly, you can always pack an empty ziploc bag and ask for some ice from an attendant while on the plane too.

Bring fresh vegetables and fruit first, with nuts, raw granola, and dried fruit as a backup. The advantage of nuts, granola or dried fruit is their portability and lack of spoilage. But they can be harder to digest vs. fresh whole foods like fresh cucumbers, celery, or carrots. Plus the extra water from the fresh food is an added bonus especially when flying and everything seems to dry you out. On our last flights I consciously tried to eat more fresh vegetables while only eating a little granola or dried fruit and it was the first time I can remember in years that I had no indigestion once we arrived at our destination.

Take digestive enzymes and probiotics during days of travel or days when you need to eat less than healthy food. Sometimes when you’re with family or friends there just isn’t an option for eating well. Luckily I haven’t had many while on my detox, but for the few I respectfully take a probiotic and a few digestive enzymes along with or between my meals. They should help the digestive process and get some of those foods to move more quickly through you.

If you’re at a restaurant and they don’t exactly follow the strictest standards when it comes to eating easily digestible foods, you can usually order a salad. I know it sounds boring, but your gut will thank you for it later. Some restaurants will even bring you olive oil and vinegar instead of heavily processed salad dressings if you ask nicely.

Continue to drink water during the entire trip. Even if it makes you stop at a rest stop every half hour or it costs $10 in the airport because you can’t bring your own, it’s worth it. The worst parts of my trips have been when I couldn’t get enough water. And when food isn’t moving through you efficiently and digesting properly, you feel awful. Granted there are circumstances you just can’t help, but water is at least pretty good for hydration and easily obtainable.

These are just some of my high priorities while traveling and eating healthy. If you want to delve further check out a great post from GNOWFGLINS about eating real food on the road.

Do you have any tips on traveling while detoxing or just eating healthy while away from home? If so, I’d love to hear them.

Detox Protocol: 2 Months Complete

Posted on by swollenmystery

Living with Lyme isn’t easy. And I’m beginning to think I must be a little crazy to attempt to heal from it naturally. I have now successfully finished week 8 of my detox/healing protocol and swiftly moving into week 9. Since beginning, I’ve been able to add bananas, molasses and coconut oil to my green smoothies now that my digestive system and colon has shown significant improvement. They really help aid those bitter greens each morning and make downing each one more tolerable. Last week I was able to sparingly introduce some sardines and salmon too. Never having tried sardines in my life, I was pleasantly surprised how mild and tasty they were. Or perhaps they’re deliciousness comes more from my lack of eating solid foods lately. Either way, I welcomed the addition with delight.

I’ve also experimented with the ingredients that go into each smoothie. Some days I add several huge handfuls of spinach, some kale, cauliflower, red bell peppers along with freshly juiced lemon and ginger. Other days I toss in random mixed red and green lettuce, various types of chard, arugula, broccoli or alfalfa sprouts, pea shoots, brussel sprouts, broccoli, and cabbage. Each day I try to add some avocado, coconut oil, banana and blueberries or strawberries along with a dash of molasses for flavor. The smoothie making process is a bit of work each morning, but knowing it will take some time gets me to bed earlier each night, and results in a better night’s sleep which doesn’t hurt the healing process.

Along with the smoothies, alternating beef and chicken broths, fermented sauerkraut, pickles, probiotic and systemic enzymes, natural herbal drops, and a lot of teas I been increasing my workouts too. Every day I try to go for a good 30-45 minute walk outside. The warmer spring weather now helps out with that. Then I do about 75 pushups and a couple rounds of isometric exercises. Or tiger moves to be exact. I think I just heard my wife chuckle.

So far most of my Lyme symptoms have disappeared completely. The first few weeks I did experience back pain, especially near my kidneys, a lot of stabbing leg, feet and hand pains and continued fatigue. But over the last few weeks my symptoms have dwindled. I’m hoping those were herxheimer reactions that I’ll only have to experience at first. Occasionally I do still get a few smaller pains randomly throughout my muscles and jaw along with some strange numbness and burning in my upper left quadriceps muscle, but I’ve had no more severe stiff neck pain, headaches, tremors, back pain, overall flu-like feeling with chills and mild fevers. One of the greatest feelings is that my thrush is almost completely gone and my tongue has returned to a nice healthy pink again. Digestively speaking, my constipation and hard stools have now become softer and more consistent. But the greatest improvement has happened in the past few days. Knee inflammation has gone down considerably. My right kneecap is even visible again. Halleluhia!

I’m now looking forward to completing my third month of the detox protocol and continuing to see more improvement each day while introducing more foods slowly. I’m amazed at how healing with natural, raw, organic food has changed the way I feel. I sleep well all through the night now and have a lot more energy during the day. Although I’m nowhere near completely healed, and my knee inflammation will probably take a long time to normalize, I do have renewed hope to continue healing and persevere on this long journey of recovery.

Healing Inside Out: Green Smoothies & Bone Broths

Posted on by swollenmystery

Two weeks ago I felt so much despair. So helpless. So much like I was traveling down the wrong path. So I prayed. I talked endlessly with my wife and family and friends about what to do next. And then I prayed some more.

Now I know God works in mysterious ways, but I never expected answers to fall right in my lap so suddenly. Of course I was praying for healing, but I was also praying for direction. And that’s exactly what I got.

At this time I was facing more mysterious blood tests, showing signs of continued inflammation, increasingly painful symptoms all over my body, fears from my rheumatologist that I may have Chron’s disease or worse yet, lymphoma. Additionally, I was working with my LLMD to test for Lyme disease and a number of other coinfections. I was worried about what to do next. Then out of the blue, an endearing stranger, in another part of the country found our story and contacted my wife about helping us out. Through a series of emails I was introduced to Tim and Terry at Life Fitness Academy In Nashville. They agreed to take on my case and give me the best hope I’ve felt in all the years of suffering with inflammatory arthritis. I could tell from the start, their  goal was to help me heal naturally from the inside out. For my particular healing, it was necessary that I should start with the gut.

Over the past several years of constant medications, toxins and poorly chewed foods, it made sense to me that my digestive system could be the foundation for a poorly working immune system. For ten years, previous to my arthritis, I thought I was healthy. I worked out constantly, striving to build lean muscle and ate almost non-stop. For many years I ate six times a day, six chicken breasts a day with various other starches and vegetables, supplementing with protein shakes and anything that seemed healthy. It was working. Or so I thought. I was building muscle and feeling pretty pleased. But I never realized that my intestines and colon were taking all the heat, building up walls inside and preparing for the battle ahead.

Even if antibiotic therapy is still in my future, I soon realized I needed to focus on healing my insides and give my body the nutrients it needs to fight off bacteria and organisms on it’s own. So along with guidance from the caring professionals at Life Fitness Academy, I’ve started an intense detox protocol to naturally heal my leaky gut, remove the toxins from my system and restore my digestive system to it’s proper working order. One of the signs that convinced me of this protocol were hard, clay-like stools and severe constipation during the past six months. That symptom alone was telling me something was wrong.

The protocol consists of eating (or drinking) homemade bone broths from grass-fed beef or organic free range chickens, all the green smoothies I want (only green leafy and cruciferous vegetables with no or little natural sugars) and a good mix of probiotics and systemic enzymes. That’s it. No other foods allowed. Simple, and yes, boring, but so far it has already improved constipation and a lot of my other symptoms.

It’s going to be a long, difficult road ahead. As I write this and sip on a giant glass jar full of green smoothie, I can’t help but think about how this is the most confident I’ve felt in years.

Going After Lyme This Time

Posted on by swollenmystery

Loss of sleep each night due to new symptoms: 7 out of 10. Pain and inflammation levels last month: 8 out of 10. Frustration with taking Plaquenil and Sulfasalazine for a year with no results: 10 out of 10.

It’s been a year since finding a new rheumatologist. Last week was my latest 3 month appointment and I was dreading it. It’s been a month since I tapered completely off Prednisone and a few weeks after having a tongue biopsy due to ulcers I believe were side effects from the medications. While the biopsy results came back negative I closed the door on another dead end. Meanwhile, my symptoms grew worse. I started experiencing things I hadn’t felt during the entire time I’ve been stickered with inflammatory arthritis.

Every night I began waking up every hour or two, finding my knees and my entire back in so much pain it was hard to roll over. Sleeping on my side wasn’t even an option anymore. Mild fevers each night and chills all day became the norm. Headaches behind my eyes, neck stiffness, flu-like aches all over, night sweats, constipation, muscle twitches, extreme fatigue, muscle weakness and jaw pain also became a regular occurrence.

I was at a crossroads. I was about to set up an appointment with my primary care doctor but had an upcoming visit with the rheumatologist in only a week so it seemed logical to wait and see what he had to say. That same week, after some investigating of my symptoms, I couldn’t help but pursue Lyme disease as a possibility. I don’t recall a tick bite except for when I was young, but my symptoms all matched up. And after watching the documentary Under Our Skin a few weeks ago, I was convinced that cases of chronic Lyme are serious and growing quickly.

So I set out to find out more information about chronic Lyme disease and how to get tested. Last year I did get tested via my family doc through Mayo Clinic with a negative result. But I quickly learned that this test can be very unreliable and if your result is negative, you can go no further with testing. With many referrals for testing methods beyond the standard ELISA, which is what most hospitals and clinics use, I set out to find a Lyme Literate Medical Doctor (LLMD). I knew this was the only way to get tested and be sure. It wasn’t long before a list of friends helped me find a LLMD nearby.

Surprisingly, the LLMD had an opening appear in his schedule for the same week so I jumped at the chance to meet with him and discuss my symptoms. I was so excited. Perhaps mostly because the visit with the rheumatologist earlier that week didn’t go so well. Instead of discussing antibiotic therapy as read in The New Arthritis Breakthrough I left the office only with more brochures for Humira, Simponi, Enbrel and discouraging news from the doctor that I may need biologics for the rest of my life. To make matters worse, I was given word that I needed to schedule a colonoscopy to check for Chron’s disease and a CT scan to rule out lymphoma.

Back to the excitement. Even though testing for chronic lyme can be controversial and usually frowned on by insurance companies, it seemed worth it to at least get tested. It was a bit expensive, but it’s either that or tens of thousands each year spent on a biologic bandaid. Furthermore, I decided to get a blood test for coinfections at the same time in case Lyme isn’t the answer. Infections like babesiosis, ehrlichiosis or bartonella can cause some serious complications and might even be the main reason for my symptoms.

I’ve been praying for how to get through these next few weeks of waiting for my test results to come back. And out of nowhere, God gives answers! Not only do I get to meet with a knowledgeable LLMD, but another possible treatment has just opened up before my eyes. With the help of some helpful nutrition, I’m off to start an intense natural detox protocol! More to come in the next post…

Book Review: The New Arthritis Breakthrough

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I wish I had read this book 3 years ago. It’s been 3-4 years since my inflammatory pain began, both in my upper back, left shoulder and knees. This is the first time I’ve been able to get a good grasp on what rheumatoid arthritis is, when it originated and what treatments have been successful in treating the disease. I should explain that the book mostly focuses on RA, but also delves into scleroderma, lupus, spondylitis and other rheumatic diseases. The author, Henry Scammell, includes many patient testimonials over recent years as a supplement to The Road Back, which is also included inside this book in it’s entirety.

One thing that impressed me while reading is the number of times Scammell gives perspective from both the patient and the doctor. I knew there were a lot of politics involved with antibiotic therapy, but what I didn’t know was the history behind the controversy. Each chapter is brief and to the point. I believe that is why I found it so engaging and hard to put down. In addition, the history behind medication used to treat rheumatoid arthritis helped give me a better understanding of why certain drugs are used to this day. From the origins of cortisone over half a century ago  to the introduction of methotrexate, I can now understand where these treatments began and the seriousness of their effects on the body.

Many instances throughout the book describe how dangerous corticosteroids and other DMARD’s can be over long periods. Rheumatologists that I’ve visited have always made me aware of such facts, and most seem to know the dangers of high doses over long periods. What I didn’t realize until after reading is that most of these prescriptions have decent levels of pain and inflammatory suppression, but only for a few years before they all lose their effectiveness. I understand that a lot of medications can really improve day to day living and reduce the possibility of further joint damage, but for me I’d rather not risk the long-term damage of my otherwise healthy organs for a few years of pain relief when I know it won’t last.

Without going into detail about mycoplasmas and the bacteria that’s involved with Dr. Thomas McPherson Brown’s antiobotic treatment methods, which is the premise for this book, I’ll say that the number of people treated by him with success and even long-term remission is enough to convince me to try the therapy. I just wish there was a way to follow-up with some of the participants since the publish date 5 years ago. It sounds like the political debate is ongoing, yet there is a lot of support within the roadback.org website and community forums.

Perhaps one of the most interesting things I discovered while reading is when most of the time a patient has had undiagnosed symptoms of inflammatory arthritis for several years, their doctor will eventually settle with rheumatoid arthritis as a diagnosis. I suppose that is why I’ve so far been treated with medications like methotrexate, plaquenil, sulfasalazine and prednisone. I haven’t yet been introduced to antibiotic therapy by any of the doctors I’ve seen, but it is hopeful to see minocycline now listed on the athritis.org website. Another thing I learned while reading is how different these antibiotics are from the traditional antibiotics used to treat things like sinus infections (the ones my doctor and pretty much everyone else I knew told me never to take too often or your body will develop immunity to those antibiotics, losing their effectiveness for future infections). Tetracycline, doxycycline and minocycline do not have the same makeup and are much safer to use over long term. It’s important to note that antibiotic treatment such as minocycline for long term arthritis treatment is not FDA approved. It’s no wonder no doctor ever seems to mention it as an option.

From the perspective of someone – anyone with inflammatory arthritis, symptoms of rheumatoid arthritis, psoriatic arthritis or even my favorite speller, seronegative undifferentiated spondyloarthropathy, The New Arthritis Breakthrough is a great resource. Even if you don’t agree with Dr. Brown’s antibiotic protocol, it’s worth being informed of all possibilities out there for treatment. I’m convinced it’s worth a try. Now I must find a doctor knowledgeable and willing.

A Fungus Among Us

Posted on by swollenmystery

This week I reluctantly visited with an ear, nose and throat specialist to find out results from a tongue biopsy. Why? Well this story started approximately six months ago. Last summer I began to notice some mild discomfort on the top and back of my tongue. A month later I began questioning why the entire top of my tongue became coated with a white, pasty film. After a little reading I discovered what was described and felt like oral thrush. Sinus drainage has been a problem for me for as long as I can remember, but I don’t recall ever growing such a distasteful fungus inside my mouth.

Several weeks later the pain on top and sides of my tongue increased, and the discoloration would not cease. This was also about the time I started having a deep aching pain below one of my teeth. My dentist didn’t find any oral hygiene issues but did notice a few pesky tongue ulcers upon observation. I thought perhaps a chipped molar may be the culprit, but even after a light grinding of the tooth and some prescribed mouthwash the pain remained constant for weeks. Next I dropped by my family physician for a quick visit. He promptly agreed that it was indeed thrush and prescribed a bottle of clotrimazole lozenges. Lozenges. That can’t be bad, right? Let’s just say they don’t add much in the taste department. Another week went by and things were looking better. I still had some mild irritation, but the white stuff just would not go away.

Intensity of the thrush would come and go week by week, but the ulcers and sores near the back of my tongue became worse. Over the next few months I relentlessly tried rinsing with hydrogen peroxide nightly before bed, then tried salt water and purchased a tongue scraper. Yes, a tongue scraper. I’m sure my wife can attest I became a more attractive man due to the persistent scrubbing of goo off my tongue each morning. Out of all the experiments, I still think it has helped the most.

Finally, six months later I decided to check in with my general doctor once more. Puzzled as usual by my exotic diseases, he referred me to an ENT. Unsure of what to think, I took him up on the offer and figured, why not? While the specialist didn’t say much about the hostile white growth all around my tongue or the large discolored spot near the tip, he did think there was an abnormality on one side of my tongue and thought it may be leukoplakia. First he prescribed nystatin for a week to fight off a possible fungal infection, but it didn’t seem to help by my follow up appointment. “Do you think it may be a side effect from one of my medications?” I questioned.” I had checked with my pharmacist and learned that sulfasalizine may indeed be the culprit. Well the only way to tell is to do a biopsy to make sure it’s nothing serious.” Great, I thought to myself. Here we go again. Jumping through hoops is my specialty after all.

Thankfully, the results from the biopsy found nothing to be wrong. So is it the medicine? Back in December I asked my rheumatologist if I could reduce my sulfasalazine intake and he agreed to give it a try. Stepping down from 3,000mg daily to only 2,000 didn’t seem to help much however. I am still scraping daily, rinsing with hydrogen peroxide/salt water nightly, and filling myself with as many nutritional foods as possible without much change in appearance or irritation. Despite the relief that my tongue is not cancerous, I still feel left in the dark. More questions have arisen, including whether my intestinal health is a clue, candida is running amok or perhaps it’s part of or related to the  mysterious autoimmune arthritis picture.

The investigation continues…

Arava For Consideration

Posted on by swollenmystery

Upon my last visit to the rheumatologist, he suggested if I’m not seeing results from my current meds I can try Arava. “Never heard of that one before”, I said. Some patients have had success he tells me, and since I’ve already tried methotrexate without any luck this apparently is the next step.

But how do I go about taking yet another new prescription without still knowing what I am treating? Besides having one clue (a brother with severe psoriasis), not one of my relatives has had a case like mine. And most of my grandparents and their parents are no longer here to ask. Sometimes I wish I knew to ask questions while they were still here. As far as I know there were a few cases of osteoarthritis, but nothing of the autoimmune variety.

So that leads me back to the next step in my investigation… or should I say treatment. Arava, or Leflunomide for those of us who like tongue twisters, is bright red on my hesitation radar. Anytime I notice severe liver injury as a possible side effect it makes me think twice. Not to mention it still feels like a treatment of symptoms rather than going after the cause. Another concern is the notation that Arava may remain in the body for up to 2 years after you stop taking it. I could go on and on about the other possible side effects or how many warnings mention the word fatal, but that seems to be the norm with most of the drugs used to treat rheumatoid arthritis or various other inflammatory autoimmune diseases.

After some searching, Arava appears to be controversial. When the FDA updates a medication with a box warning specifying, “risk of severe liver injury”, it makes me more than a little uneasy. Further details about the warning explain that death from liver failure  in over a dozen patients on the drug coincided with other medications they were taking that affect the liver. Regardless of how many other medications were involved, Arava has a definite affect on the body. I will continue to research Arava and other options in my quest to make an informed decision, but for now the side effects of this drug outweigh the symptoms I already experience.