Dermatomyositis and Epstein-Barr Virus - And The Medical Medium

One of the things I have noticed since being diagnosed with Dermatomyositis is that my symptoms generally remind me of someone who has had mono, Lyme disease, chronic fatigue syndrome, herpes and rheumatoid arthritis. I began wondering if there was a connection. More specifically, the symptoms that are the same are fatigue for unknown reasons, and joint pain. At one point I was seeing both a dermatologist and a rheumatologist. The medical treatment for all of these is also similar, especially the anti-malarial drugs that have quinine, and prednisone as an anti-inflammatory. There is little research on the above diseases in relation to their source - except Herpes, the sex disease - supposedly. They seem to be a mystery, but they do have the Epstein-Barr virus (EBV) in common in some form.

I have found several articles relating Epstein-Barr to chicken pox, herpes, Lyme disease, and various other ailments attributing a reemerging of the virus. The enlightening article related that people with Herpes usually had had a version of the virus as a kid in the form of Chicken Pox. But again, very little true research.

In researching Christmas wishes, of all things, I found the Medical Medium, a book by Anthony William and published by Hay House. I read the online version of the free chapter on Epstein-Barr and decided that was on my must have list. For the first time I read a confirmation of all that I had in theory regards the relationship between these ailments and Epstein-Barr. And I found someone who had pretty much described what I have been going through health-wise for many years - with a suspect as to the source.

http://www.medicalmedium.com/

He describes Epstein-Barr in detail and how it reeks havoc on the body. He also relates all of the illnesses that can be attributed to EBV, including mono, a false positive for Lyme disease, chronic fatigue syndrome, and rheumatoid arthritis. I felt like I hit the jackpot!

Not only does he describe in detail how this virus affects the body in stages over time, but he gives you tips on healing foods and herbs to get rid of the virus once and for all. It has alluded the medical industry, and, as we know, there is not suppose to be a cure for Herpes, so it pretty much leaves us hanging if we have had that diagnosis.

Fortunately, I had intuitively been eating some of the things that he recommends for people with Epstein-Barr, so that was also encouraging. And other than my constant skin rash and itching, and periods of fatigue, I haven't had many other complications associated with the dermatomyositis in the last year. I haven't had the joint pain for several years, so have felt lucky like I am on the mend.

But the itching and the skin rash have been almost unbearable. I even take Benedryl when I can't take the itching, and it calms the itching - and me - down for a moment of reprieve. My topical meds don't seem to be working anymore, so I decided to go "gung ho" in the EBV detox as Williams prescribes.

I've read the chapter over several times, made notes and a grocery list. I did my shopping and loaded up with celery and papaya and ginger for my initial detox as recommended. My first day was ok. I was juicing celery all day and drinking nothing but that with lemon water and herbal teas in between. This, as he states, is an excellent gut flush and reestablishes the hydrochloric acid in your stomach for good digestion. And, as I have previously blogged, you must have a clean gut to detox effectively without causing greater harm to the body. You can't send it down the pipes if the pipes are clogged.

The juicing was fine, I didn't feel hungry or tired, but I started to notice some joint pain in my low back. I went to the gym with my partner and sat in the sauna. The heat usually relaxes me and starts a good skin detox. I even did dry brushing to stimulate the skin to help me out with the detox. After I did low impact slow cardio on the elliptical machine so that I simply gave my lymph system a flush after the celery juice and sauna. As I said, I started to notice some joint pain and discomfort - first in the sauna. That was Sunday. By that night I was so uncomfortable that I tossed and turned and did not sleep hardly at all. My low back and hips were so stressed and painful, I finally got out of bed because lying down was killing me.

Part of the detox routine is to drink herbal teas. I chose Lemon Balm as the main tea because it kills EBV. I had been drinking it throughout the day. I must have triggered a response to the dying EBV that caused it to panic - usually described as a healing crisis. You feel worse before you feel better. I'm not unused to that when detoxing. I have had the detox headaches before. But nothing like the pain that has continued to develop in my low back and joints.

If I could tell Mr. William anything, it would be that he forgot to mention the pain you will be in when you try to detox EBV when it has reached Stage 4 in your system. Based on his description of symptoms of Stage 4, which include heart palpitations (for no reason and the doctors say you are healthy), and other stuff that escapes me right now, I have definitely reached Stage 4. Part of the problem in Stage 4, he says, is that the virus is intent on infiltrating your central nervous system and attaches to nerve endings so that it can control the flow of hormones it feeds on, specifically hormones associated with pain. Yeah. So the virus is panicking and attached to my nerves and sending LOTS  of pain signals so that I will generate the hormones to feed it so it can reproduce while I'm actively trying to kill it. I just don't know how long this merry-go-round is going to last.

I did slow down on the teas that are supposed to be killing it until I can get a handle on the pain. As I said before, I am reading and re-reading the chapter for clues, but HE FAILED TO MENTION THE PAIN AND HOW TO DEAL WITH THAT (emphasis purposeful).

I went to his website this morning (it's now Wednesday at 4:00am) to see if I could blast him a message. No, consultations are now by lottery because he is so requested. I did sign up for the free booklet on the 10 best foods. Bingo! Ginger is for pain management. Therefore, I have grated my ginger and it is steeping as I write. There will be lots of ginger in my teas today.

I will keep you posted, but check out the book if you are ailing. He is way ahead of his time and has an insight to things the doctors are not yet aware of. If you are an intuitive, it will all make sense. If you are skeptical, keep dealing with your pain. I'm in pain, but tired of being tired. I've given over almost 7 years of my life to not being able to perform at my normal pace. I just turned 50 and I refuse to live the rest of my life as I have for the last 7 years. Pain will pass, and so will my life. I just don't want to miss the best parts, which are yet to come. Cheers!!

Later in the day ... I've been drinking the fresh ginger tea since waking this morning in this terrible pain. I woke up from a nap unbelievably changed!! I am grateful for the advice on fresh ginger tea and for my miracle workers!! Grate fresh ginger, steep in purified water, add lemon and honey ... amazing!

Running Tips and Tricks - Mini Trampoline and Jump Rope

I've done 2 Sprint triathlons now - both this year, and my running is still my weakness. My running time actually got worse. Realistically, I haven't concentrated on my running per se. I have been running, but not in a way that would generate improvement.

Since my time was slower, I started thinking about what I used to teach my athletes about speeding up the legs. I have endurance, but not speed. I have started incorporating the warm-up work out drills into my running routine ... but completely forgot about the benefits of jump roping!! Back to the mini tramp this morning and on to the jump rope. As I suspected, my jump roping skills have lagged!! I did 500 jumping jacks on the mini trampoline to warm myself up and get my legs in the mood to bounce. When I tried jump roping, not so good.

The trampoline and jump roping help build the springiness in your ankles and feet needed to push you forward quickly. I can build power in my legs, but I need my feet and ankles to cooperate too. The mini tramp felt good - and is supposedly a good way to stimulate weight loss too.

I'm excited because my workout times are increasing. When I first started last February, I was only running, biking or swimming 20 minutes at a time. I was worn out by then. I have increased my workouts to 50 minutes at a time on a short day without getting wiped out and going to bed!! That is a huge improvement in my endurance. I may not be hitting the times I want in the races yet, but day to day I am seeing improvements. Looking forward to the progress that the minitramp and jump roping will bring!

Running - My New Challenge

In 2009 I was diagnosed with an auto immune disorder that affects skin and muscle - dermatomyositis. As a result I spent 2 years on prednisone - and consequently gained 50 pounds. I kept getting told "the weight will come off after you get off the prednisone..." Nope, 3 years later and still battling the bulge. However, I have dropped 23 pounds!! And am getting back into shape.

The most dramatic affect of weight gain and being on/off prednisone is how weight affects your ability to exercise effectively or efficiently. If you've never been on prednisone, then you may not be aware also that coming off of it (a prescribed steroid) causes a "crash." It was the 2-3-4 week crashes every time my dosage was dropped that also affected my ability to exercise. 

Needless to say, I'm still in recovery, but enjoying the cross training. Running, well, used to be fun. It's not so fun with extra pounds. That's why I started reading Running a Marathon for Dummies. It has great info on the bodies physiology as it adapts to longer and longer periods of running. Some of it is a refresher, but a lot is new. I highly recommend checking it out if you have the extra pounds that you are not used to and want to get your athlete self back into shape.

Dermatomyositis Update March 2015

So it's 2015, and I am still managing the dermatomyositis without oral medication. The last time I visited my dermatologist, she wouldn't put me back on the prednisone because I had never lost the weight that I gained from the prednisone previously. So, the idea that weight gained when you are on prednisone goes away when you get off of it is not always true. I never lost the weight.

Additionally, I had been depressing my immune system by eating sugar - on purpose - because it stopped the itching.

My dermatologist gave me 3 different topical medications: one for my neck and upper back, one for my head and scalp, and one for my hands and arms. I use the topical medications when the outbreaks are itchy and red and irritated. I use an antihistamine when the itching is out of control. It stops the itching, and she said I could continue to do that.

She also sent my to my general practitioner for consult and blood work. I had become pre-diabetic, pre-high blood pressure, and pre-high cholesterol. Basically, I was a mess and definitely over weight. I had gained 55 pounds in this process, and not able to get the weight off. I recognized the symptoms of being pre-diabetic. I was thirsty all the time and felt like I had to go to the bathroom - urinate - all the time. My skin was dry and flaky around my mouth, and my hands were horribly dry.

I cut all the sugar out completely and immediately. I'm not trying to kill myself just to manage dermatomyositis. I want my health in tact. I have a long bucket list, and my children are starting to have children of their own. I would like to be around to enjoy my family and my partner. I am motivated to change my situation is my point. If you are in a similar situation, you have to find your motivation. I personally want a high quality of living if I am going to be on this planet.

So I cut out sugar and started watching my carbs. I also made more of an effort to go to the gym to at least exercise on the treadmill, bike or in the pool. I started riding my bike. That is what my rheumatologist had told me would help. Keep moving, keep the lymph and muscles flushed out so I don't accumulate the bad stuff that causes the break down in the muscles and joints. I really had slowed down on the exercise.

In January my partner bought me a Vivofit. That has been amazing because I can track my calories - something I have NEVER DONE. I had no idea how much excess healthy food I was eating. Did you know an avocado is 350 calories!?!!! OMG I came to understand that I was eating healthy for like 2-3 people!! So calories and portion size reduced immediately. With the Vivofit, you can track your calories and daily activity. It reminds you to move when you have been sitting for too long, which improves your metabolism. Awesome!! I had lost about 10 pounds before I got it, and now I've lost another 10 pounds with it!! I also like that it helps me be aware of my movement by tracking how many steps I take in a day. If I hit my quota, I'm on the path to weight loss. If not, I know I will stagnate.

More than anything, I am simply more aware of my calories and my exercise. It's amazing. I really never had to do that before, so I was not aware. If you are in a similar place in your struggle with dermatomyositis, or even with weight loss, consider getting a device that allows you to track your food and exercise. However, I do NOT recommend this if you have a history of food disorders. My partner does, and she quit tracking her calories as soon as she was clear on food portions that worked because the idea of tracking was sending her back into food disorder mode. If you are under the care of a physician or counselor for a food disorder, you need to work with them before taking on using a tracker. IT'S REALLY IMPORTANT YOU DO NOT TRIGGER YOUR FOOD DISORDER :)

Be healthy ya'll!! Til next time!

Iron and Exercise

Adding an iron supplement has certainly helped with feeling better. I am not as cold or apathetic - and am feeling like exercising more. I have ridden my bike 4 times this week for 30 minutes each. Today I actually rode in the highest gear for most of the ride.

I was a bit fatigued yesterday, but am trying to make myself ride anyway. It's not perfect yet, but better.

Additionally, I am drinking a protein shake every morning either before or after the ride. This morning I had 2 Rome apples and cashew nut butter for breakfast and a half a cup of coffee. That flushed my system before the ride and gave me lots of energy. The protein shakes seem to be helping me with muscle recovery that has been such a challenge with dermatomyositis.

Just feeling like exercising is a huge improvement! I was beginning to be concerned about the onset of depression. Exercise is key to keeping my spirits up, but have been fighting it for so long ... just not feeling it.hy

The Biggest Loser - Changing a Person's Belief System

I am not much of a TV watcher - at least not until this last year. My partner watches TV like the average American: 3-4 hours a day. Amazing those statistics. But with muscle recovery being an issue, it has become more of a habit to lie down in the evenings elevating my legs to get the water off and reduce muscle fatigue. And, it has been an interesting year of television.

The Biggest Loser

The most recent show that we have started watching for the first time ever is "The Biggest Loser". With us both being particularly sensitive to this years weight gain and all of the emotional issues associated with rapid weight gain - or chronic weight issues - it is an intriguing show. I didn't realize that it was in it's 16th season already and has grown to include resorts around the country that help people with serious weight issues.

I think what I have liked most so far is that the coaches recognize the emotional baggage that weighs a person down literally to massive weight gain. I like that they are dealing with the emotional issues as part of the bigger picture with an understanding that until you deal with the emotional reasons for weight gain, a person may lose weight, but will eventually put it right back on.

Emotional Baggage/Weight

This has been a year or four of dealing with deep emotional issues in my life that have caused me to have numerous habits and attitudes. Watching this show is making me take a second look at emotional issues associated with the weight gain - other than what I've already blogged about: the dermatomyositis, anemia, sugar, prednisone etc... because ultimately, we emotionally and subconsciously do things to ourselves to sabotage our future depending on our belief system.

Your Belief System Drives You

There is no greater drive than our belief system. Every decision we make is based on our belief system. If it is faulty or been created by a set of false beliefs through misinterpretation of experiences or memories, then it can drive us to destruction. Also, if we have been programmed by those who raised us to have negative attitudes about ourselves, then it is faulty programming - because why should you believe what someone else says about you?

To me the first step in getting well is to begin to appreciate yourself through your eyes only. Sometimes you have to step away from what you have heard about yourself your whole life and create your own image - actually get to know yourself - honestly. Maybe some of the things people have said are true. But maybe, just maybe, they are not. Own the things that are true, and disown the things that are not true.

America is a great place for reinventing oneself. I've done it several times in my short life time. When what people around me were saying did not match what I knew to be true in my heart, I had to find new people to talk to. I've walked away from life long "friends" much the same way we expect an alcoholic or drug addict to walk away from a life style that causes harm. Some times you have to choose what is best for you and negative talk even from people closest to you is not what is best for you.

A New Perspective on Television

It will be interesting to see how the participants of the show this year progress through dealing with the emotional baggage. I'm proud to see them do it and know that it is inspiring others to do the same. Mostly I'm glad that watching TV has not been such a bad thing this year. I've been inspired. Thank you "Biggest Loser."

Anemia - Little known side affects

Since being diagnosed with the dermatomyositis, it's been a challenge to feel good and maintain a steady habit of exercising. I weened myself off prednisone a little over 2 years ago - trying to get the weight gain associated with prednisone under control.

Unfortunately, the prednisone weight did not fall off as my doctors had said it should, and as my friends who had also taken prednisone had said happened to them. In fact, not only did I maintain the weight, I gained more weight.  

Your Immune System

Most people do not realize that proper digestion takes measured amounts of vitamins and minerals. Depending on what you eat, digestion takes more or less of those vitamins and minerals. Additionally, for your immune system to function at its best capacity, your body also needs measured amounts of vitamins and minerals.

The most difficult and sapping item to digest is processed sugar. It requires large amounts of vitamins and minerals, which is why when you are sick, you should avoid sugar so that your immune system can function better to heal you or fight infection.


Based on this premise, a person with an overactive immune system, like myself, can calm the immune system down by eating sugar. Supposition:  If I have high amounts of vitamins and minerals in my body from either taking a multivitamin or eating high quality foods, I find that my immune system is over active and my dermatomyositis gets worse. Similarly, patients with Lupus are cautioned not to eat vegetables with Vitamin K because it make the Lupus, also and autoimmune disorder/disease, more aggravated.

Because of this, and in an attempt to stay off the prednisone, I was eating refined sugar to keep my immune system from being out of control. So I eat a healthy diet, feel my immune system becoming over active, I eat sugar. I try to exercise, but the slow muscle recovery - a side affect of the dermatomyositis - made me minimize my work outs. Over time, I just continued to gain weight. Even though my immune system was being kept in check without meds, I was unwittingly causing other problems.

Benefits of a Blood Test

I recently had a blood test that showed my cholesterol is borderline high, and I'm now pre-diabetic. All the sugar consumption has taken it's toll. I've gained over 50 pounds since my diagnosis 4 1/2 years ago and not been able to get it off. The other interesting thing my blood test showed is that I am anemic. I have been anemic before, but didn't realize how anemia affects your ability and willingness to exercise.

I did some research into anemia and exercise and found that low iron causes an apathy and lethargy in typical and usually active athletes in addition to the average "Joe or Joan". I never knew that and would never have considered that as part of the problem for me not being more active. Yes, the slow muscle recovery is a challenge, but combined with a biochemical reason that my body is resisting exercise has made it even more challenging.

Beets

As I often do, I try to listen to my body about what I need. I had been reviewing the different foods that help with inflammation because inflammation is the primary cause of the problems associated with dermatomyositis. (Inflammation is being recognized more and more as the cause of most diseases - and thereby identifying the foods and activities that cause inflammation as a preventative to inflammation and disease has become more prevalent in preventive health care and disease control.) Beets are an excellent source of iron, a liver detoxifier, and an anti-inflammatory. But what I didn't know is that beets cause the color of your urine to change ... especially if you have difficulty digesting iron!! Eating the beets made a huge difference right away.

I had been having the pre-diabetic and diabetic symptoms of being thirsty, having dry mouth , and having issues with frequent urination. Even though I recognized the symptoms, I refused to believe that I was actually pre-diabetic. No way ... not me. But then I had a rapid weight gain of almost a pound a week for almost 4-6 weeks. I was freaking out. Then I added beets.

The weight gain stopped. I actually lost weight immediately - both the recent weight gain, and started dropping weight I have had on me for the last 6 months. My thirst diminished, and so did the frequent urination. The other positive effects were that my brain fog and fatigue were also reduced. So now beets are a part of my diet almost every day. I continue to have the same benefits and weight continues to come off.

Anemia

The blood test showing the anemia was also an eye opener. And the research about the apathy. I did add an organic iron to my diet, and like the beets, the results are immediate and amazing. I actually feel like exercising and have started back to the gym and riding my bike. I am sleeping less (I was sleeping 10-12 hours a day) and have more energy and less brain fog. I feel like I am finally getting my life back. 

What I've Learned

While I thought that the sugar was a solution, over time, sugar has proven once again to be the killer it is known to be. In moderation a treat is not a bad idea, but not on a daily basis. Because I have been an active and agile athlete and then gone through this phase of not even having the desire to exercise, I can appreciate my good health even more. Of course I have compassion for others who suffer similar experiences, and I hope by blogging that at least one other person can glean some idea that takes them down a road to better health.