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!

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

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.

2012 Update - Dermatomyocitis

So what is this "itis?" It's a cousin to Lupus and not very well understood. Very little research has been done on it, so little is known about what triggers it to start or what causes it to stop. There is therefore no known cure. What does it do? It is an autoimmune disorder that attacks the body’s skin and muscles, and I was diagnosed with it in March of 2010.

Symptoms

I had this crazy rash thing on my neck and chest that itched, a patch on each hip and my cuticles were red with blood spots on them, so I finally went to a dermatologist. I walked into my first visit and my doctor looked at me and said, "You have dermatomyositis." She looked at all my rashes and indicated that I had all the classic symptoms including the papules that were forming on my knuckles on my right hand. Then to my surprise, she also stated that it was associated with cancer in 40-60% of all cases, so that meant a thorough cancer screening for me.

Coping

So how does Miss Healthy cope with all of a sudden being diagnosed with a rare autoimmune disorder? She reflects, studies and takes medication for the first time in her life. Yes, I was put on prednisone to stop the symptoms from getting worse. And yes, I tried everything I knew to eliminate the symptoms. My last post in January of 2010, I was dealing with the symptoms - which I did not understand. The rash on the back of my neck and chest was like a sunburn that never went away. It bubbled up, and stayed bubbled up. I was eating healthy, on antioxidants - maybe too many. I may never know.

Tocopherols

What I do know is that I was under an extreme amount of stress. I kept hearing in my inner mind that the problem had to do with tocopherols. I actually did not know what those were at the time and had to research. Tocopherols are a form of Vitamin E. As it turns out, most of what I was taking as my healthy supplements had excessive Vitamin E or tocopherols, a vitamin which you SHOULD NOT take too much of. I may have over done it, yes, I may have over done it. Booooo. Remember the old saying, "Everything in moderation..."  Well, even healthy apparently can be toooo healthy.

Medication

Dermatomyositis is unpredictable. The medication regimen is to start with high dosages of prednisone and gradually reduce it to a place that was manageable. I have spent the last 2 1/2 years going up and down on prednisone levels trying to find what works, or make it last if I was between doctor visits and without insurance. I was also on Plaquenil, often used to treat malaria or Lupus. The side effects are a loss of color vision after about 10 years. That literally made me cry. I would rather go to the dentist than to go to the ophthalmologist with that knowledge. After my last dose of that, when my skin seemed to be under control, I didn't get a refill.

Side Effects

Prednisone is actually produced in small amounts by the body, so I decided to regulate with that. (Who is the doctor? lol) I was also supposed to take high dosages of calcium and Vitamin D. Prednisone reduces calcium in the body and can lead to osteoporosis. I did take both of those supplements. The problem I kept encountering was upset stomach, indigestion, diarrhea - all of which I was told I might have. However, I didn't want more medications to alleviate those problems too. So every now and then, I would just stop taking everything when my stomach was a mess. I encountered what is known as the prednisone "crash." Prednisone, as a steroid, replaces your adrenaline. When your adrenaline is reduced, and you have no prednisone to keep you working, you "crash" or run out of energy. I would literally end up sleeping on and off for days. Or, I would hype myself up on caffeine and sugar until my body regulated.

Weight Gain

The other side effect of prednisone is weight gain. I was told this is normal, but if you get off the prednisone, then the weight comes of pretty quickly. Well, not yet it hasn't. I actually tried to use the prednisone to my advantage. Because my dosages were so high at various times, and I was so full of energy, I went to the gym. My body type generally bulks up any time I work out, and with the prednisone, I bulked out A LOT. So, I am not anticipating the typical weight loss. I was always self conscious as a kid about my body - who isn’t? And bulking out was not very feminine, so I avoided it by running and not weight lifting, etc... Not an issue for me anymore. I have learned to be comfortable with my body type and know that my health is more important than my pant size.

What am I doing now?

What am I doing now? I’m out of medication, I have no insurance – like many Americans, but my condition is relatively stable. I don’t have the horrible rash and itching – it’s slight right now. However, my feet and legs are stiff and sore after every work out – more than they used to be – and my metabolism is sluggish. I have symptoms of somebody not on a healthy diet and full of candida, which is a typical side effect of long term use of steroids like prednisone: fatigue, weight gain, muscle and joint soreness.

Balance my pH

My biggest concern is my joints. I am doing a 7-21 day detox to try to eliminate toxins that would cause joint soreness. My studies have shown me that arthritis and arthritis like symptoms are  indicative of an acidic pH, which leaches calcium out of bones and can cause osteoporosis. An acidic pH can be caused by too much acidic food like canned or bottled fruit juices, or too little basic foods like green vegetables. For me, I am reducing my intake of fruits and fruit juices – except for green apples I am juicing to help my gall bladder – and increasing my green veggies by juicing and making vegetable soups. I have also eliminated dairy and wheat for this period of time because they tend to cause the most issues and inhibit a good detox. This is not a pure detox because I am not eliminating solid foods entirely, eggs for protein, or fish. I believe my body is still a little too sensitive to go cold turkey to a full detox, and I do not want to inflame the dermatomyositis and start over.

Reduce Stress

The difference for me is that my stress levels are greatly reduced right now. I believe that stress played a huge role in this illness. I have times in my life where I have been under tremendous stress, but nothing compared to this. Studies have shown that stress is one of the major causes of severe illness. I certainly am a believer!! The other thing I do to relieve stress is go to the gym. My gym has a sauna, whirl pool, and swimming pool. My after work routine for a while was to go to the gym and cross train: swim, bike and run. Sitting in the sauna helps to relax, heal, and detox the body, and the whirl pool helps relieve muscle soreness after a good workout. I also have an excellent massage therapist who helps keep my stress levels in check.

Know my self

The most important thing for me during this period has been to spend time focusing on myself mentally, emotionally, and spiritually. A healthy person reflects on life as they live it, is flexible and changes as needed sometimes to adapt to a change in environment. As we get to know ourselves a little better, sometimes we just change because it is better for us – an improvement. Our core values may stay the same, but our perspective may change based on new knowledge or experience. My core values are the same, but my perspective and how I think about things has definitely changed. Perhaps that is why my stress levels are lower, my health is improving, and I am finally able to write again.