Category Archives: disease

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.

On The Right Path, But Not Out Of The Woods Yet

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This weekend I completed (celebrated) finishing three months of a detox protocol for healing my gut naturally. While I’m not completely going back to the way I used to eat, I am going to start re-introducing more foods besides raw vegetables and bone broths. I feel like it’s graduation day. Welcome to life in post detox! Yes, it’s affected me that much.

It’s so exciting to see the progress, even though it’s slower than I hoped at times. But I consider this detox protocol successful because it was designed to heal my gut, eliminate built-up antibiotics and other medicines I’ve taken over the years, and therefore allow my immune system to start to function properly again. I truly believe I’ve seen that happen over these last 12 weeks. The first signs were changes in bowel movements as my stools became more frequent, softer, and normal. Then after two months I finally began to see changes in my knee inflammation. For the last year both of my knees have always been swollen (a lot), even while on Prednisone for so long. This was the first time my knee effusions have shrunk to almost to normal size. Now from week to week I’m noticing my knees still flare up but usually one at a time and the swelling tends to be isolated to only one knee instead of both. Overall, walking, getting up and down from a seated position, and walking stairs have been so much easier, too. Even though I still have the swelling, at least something is happening. I’ve also been able to start exercising more often. And the flare-ups seem to be random and unrelated to the workouts, which is a good sign. Hopefully it’s a herx reaction meaning the bacteria is finally on its way out.

The other night my wife and I went through a list of symptoms I wrote down when I started the detox and most are now completely gone or dramatically lessened.

Symptoms now gone:

  • Near constant headache behind eyes, on sides of neck, and at base of skull.
  • Tongue thrush, sore and irritated in the back and sides with a white film in back. Metallic taste, pain when I curled tongue, small white spot still present in the front.
  • Sinuses stuffed.
  • Spine and back pain, stiffness, soreness, tenderness to touch especially near the spine, especially on the left side with any movement. Middle of back near spine achy, sore, stiff all the way to the bottom of ribs.
  • Intermittent pain in low back where kidneys are.
  • Chest feels heavy and flu-ish off and one during the day. Sometimes it’s hard to take deep breaths.
  • Muscle soreness in hips and low back, especially after workouts.
  • Off and on stomach cramping.
  • Constipation and very hard stool. Bowel movement about every two days.
  • Rare instance of overnight incontinence, no pain with urination.
  • Need to get up one to three times every night to urinate.
  • Wake up every one to two hours at night because of neck and back pain. Very uncomfortable to be on side because of neck and shoulder pain. Painful to have knees touch. Some nights too painful to roll over in bed. Very high fatigue level during the day as a result.
  • Low concentration.
  • Muscle twitches–random, but in all major muscle groups. Lasts 30 minutes to three hours.
  • Upper legs are restless, especially when exhausted. Muscle weakness in legs.
  • Very hindered mobility and altered gait.
  • Lower legs not very flexible–possibility of fluid moving down into calves.
  • Two rough circular patches of skin on the left arm. Present for two months, did not respond to fungal cream (suspected ringworm at first).
  • Nightly fever, highest 100.3, often at 99. Feel feverish nightly regardless of temperature.
  • Night sweats.
  • Difficulty regulating temperature–has chills all day long even while wearing multiple layers. Has chills at night before getting fever.
  • Occasional nausea.
  • Occasional lightheadedness, especially after walking for 10 or more minutes.
  • Some mild depression.
  • Feel more thirsty.
  • Two episodes of waking up in the middle of the night to numb forearms and hands while laying on back. Multiple episodes of numb shoulders, forearms, and hands while laying on side.

Symptoms I still have but have improved drastically:

  • Somewhat blurred vision. (Fine with glasses for astigmatism.)
  • Neck pain, stiffness, soreness, tenderness to touch, some seizing, constant aches, hard to stretch without pain. (In suboccipitals, scalenes, and sternocleidomastoids—now only present occasionally.)
  • Aching collarbone, pain when moving shoulders. (Used to not be able to lift arms above head without pain—now that is no problem.)
  • Very low libido.
  • Knees are consistently swollen, the left more severely, although both have lots of fluid constantly. Pain underneath front outsides of both kneecaps while standing. Movement causes popping. Knees hurt, but not when sitting still. Movement hurts, load bearing/pressure is extremely painful. Can’t perform full leg extension. (Much improvement in past few weeks both in flexibility and movement due to less swelling.)
  • Deep off and on ache in tooth and lower jaw on the back left bottom molar area. Dental examination revealed normal jaw and tooth. (Random ache still pops up occasionally.)

Symptoms I’ve experienced since the detox but did not have before (most likely Herxheimer reactions to my treatment)

  • Numbness, burning and sometimes sharp stabbing pains off and on during the day or night. Isolated to upper left thigh. Pain, numbness comes and goes day to day.
  • Acute, sharp pains in knees and occasionally feet or wrists. This has only happened occasionally.

For the upcoming months I’m on a quest, no longer for diagnosis, but a journey to find healthy, nutritious food and continue to eat the best I can to provide more healing each day. Lyme Disease is proving difficult to eliminate, but I’m confident that whole, raw, fermented and even cooked natural foods can go a long way in providing the body what it needs to fight off harmful bacteria and organisms.

Diagnosis Solved?

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During the past  three years I’ve developed an enormous amount of skepticism, caution and indecisiveness when it comes to the medical world. I’ve felt that every path has led to a dead end. Often the treatments I experienced have made my symptoms of inflammatory arthritis worse. Yet I now look back at those events as learning experiences. Perhaps God was showing me something, giving me knowledge and experience with those events for a purpose. A purpose which I may never understand. But that’s ok. Through an unexpected chain of events, meeting new people, finding new doctors and growing closer to Him, I finally have a diagnosis.

Last week my western blot test came back CDC positive for lyme disease. Along with that I tested positive for several coinfections including Bartonella, Chlamydia Pneumonia, Mycoplasma and HHV6. Wonderful? Yes! In fact, I’ve never been so happy to have a diagnosis. A diagnosis that can be treated. Better yet, a diagnosis that can be treated with a possibility of complete remission!

So that’s it. I have lyme disease. More specifically chronic lyme disease, as it’s apparently settled in for quite some time. The greatest part of all this is knowing what to treat and having confidence that there is an end in sight. So what will I do with this blog now that I have a diagnosis? I will continue to post progress during my treatment. I’m continuing the natural detox protocol while introducing other all natural treatments aimed specifically at the bacterial infections. I plan to continue providing a resource for those with not only lyme but other related autoimmune diseases. My hope is for the best possible diagnosis and healing of anyone that continues to suffer through the mystery of pain and inflammation.

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

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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

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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.

Autoimmunity Epidemic

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Are we on the edge of an epidemic when it comes to autoimmunity? Or just aggregated media spreading like wildfire? Among the expanding gluten-free sections at grocery stores and special menus now at restaurants and a multitude of online articles, NPR wrote an enlightening story referring to a study in a recent article about increasing cases of celiac’s disease, an illness caused by the body’s reaction to gluten.

What I find interesting is the question about the number of cases reported more recently and how more cases of the disorder are showing up in older people who have eaten gluten packed breads and grains for decades. So why is going gluten free, celiac’s disease and autoimmunity such a big thing these days? Maybe it has more to do with our over processed world of consumption than we think.

One of the experiments my wife and I have tried lately is cooking with more whole foods, and little or no processed ingredients whenever possible. I have to say, its’ so difficult! Everything around us is processed. It’s quite a chore to find ingredients that are natural or whole and food companies seem to latch on to “natural” or “organic” to fill their pockets more than a concern for our health. But that is another topic on it’s own.

The past two weeks I’ve gone gluten-free to see how it affects my knee inflammation. So far I haven’t seen a lot of change in swelling. While it has been easier to find gluten-free products at the grocery store, most of those products still suffer from the inevitable soy preservatives or highly inflammatory oils such as safflower or sunflower. Some days I feel like organic vegetables are the only non-tainted foods left to safely eat. Positive as that might be, I often wonder what’s harmful about them when I know they are not locally grown.

Now that celiac’s disease is more commonplace, even with people that haven’t had it for 60 years, we may start to see a change of mind when it comes to processed foods. I hope that day is soon.

ALCAT – The Good and the Bad

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It’s been about 8 months now since I first got my ALCAT test results. After 6 months I decided to start introducing some of the foods on my severley to moderately intolerant list back into my diet. The results have been less than stellar. My first big introduction was malt. I figured malt would be great to try since it gave me several foods to choose, one being all purpose flour, which I had been craving for quite some time. It’s just not the same eating pizza or trying to make bread with all whole wheat flour. Every once in awhile it’s nice to bite into a warm, glutenous hunk of fresh baked ciabatta or a mouth watering sweet roll from Texas Roadhouse.  Beginning by consuming almost two loaves of fresh baked breads and topping that off with malted milkshakes and a beer later that evening may have been a little excessive, but this was after 6 whole months of resisting every temptation. Both my knees did swell up considerably a few days afterward, but I’m still unconvinced that this wasn’t just a part of my normal cycle of flare-ups.

All through the 6 month period, my knees have flared regularly, leaning mostly to the higher side of inflammation most days. And during those 6 months I’ve been religious about not eating anything from my severe and moderate list of intolerant food ingredients. I even stayed mostly away from the yellow foods in the mild category. The ALCAT plan recommends staying away from severely intolerant foods for 6 months, moderately intolerant foods for 3-6 months and mildly intolerant foods whenever possible. This meant that restaurants were out of the question, and eating with friends or family was sometimes difficult since my wife and I usually would prepare all of my meals before going on a trip or eating anywhere but home.

If anything, the ALCAT test has taught me to consider what I eat each day and try not to eat the same foods more than two days in a row. Even though I’ve made it past the recommended 6 month period, I still rotate foods in each meal and consciously watch so I don’t eat the same foods for more than two days before rotating.  I’ve since introduced chicken, lemon, beef and a few others every few days without much difference or reaction.

Another habit I’ve picked up from taking the ALCAT test is daily logging every single food I eat along with my pain level and amount of swelling. This helps me keep a log and cross reference any possibility of a reaction to intolerant foods.

Overall, I can say the ALCAT test was worth it, but mostly because it rules out the possibility that my knee inflammation is caused by food intolerance. Staying with it for 6 months and remaining strict with my food intake has allowed me to really look back at my pain and swelling levels and find any clues in this continuing investigation. I still feel that food may be a part of my autoimmune issue, but not the main cause. On a side note, my sinuses seemed to get worse (pressure and headaches) after re-introducing a few foods on my list like malt. I used to get sinus headaches all the time before starting the rotation and elimination diet. If anyone else has taken the ALCAT test and found success I’d love to hear about it.

Detoxification

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I’ll admit, I’ve been a little paranoid lately about toxins. After finding a significant amount of mold growing on all the window sills and patio door last month, and deciding to turn off the in-home humidifier indefinitely, I suddenly had all sorts of questions popping up in my head. Could mold be causing my immune system to freak out? Do my knees swell when I’m exposed to harmful toxins, bacteria or chemicals? Am I eating too many heavy metals with each bite of fish or vegetables? What about the air I breathe?

Overall I feel like I do a pretty good job of eating the most natural foods and staying clear from harmful chemicals or places that might harbor such toxins. But recently I’ve read that there are several other detox therapies that can help with an autoimmune disorder. Herbal chelation, nutritional therapy, massage, high-heat, intestinal cleansing and environmental controls are just a few. Fasting is another method I’ve considered, but don’t know that I could physically last more than 4 hours without a meal. I would be very interested to hear if any of these techniques have been successful for anyone with an autoimmune illness.

Thoughts and Prayers

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prayer

If I’ve learned anything from my experience with an autoimmune disease, it’s that prayer can be a blessing. I want to thank so many of my family and friends for their thoughts and prayers. I’m so thankful for the fellowship of those who share my trust in God, and that through prayer, and His will, I can overcome this illness. Listening to words of concern, thoughtful insight, and prayer have given me nothing but hope, confidence and high spirits every time I experience a downhill slide. And it’s those thoughts that help me push through rough times and move past them. Experiencing a hidden illness can be very depressing and extremely disheartening without anyone to talk to about it. I would encourage anyone experiencing a difficult illness such as an autoimmune disease, that sometimes seems hidden from the public eye, to not only seek those knowledgeable about medicine, but to look for those who are willing to share knowledge of God’s Word. For it’s that knowledge and understanding that keeps me determined and fearless that healing is possible.