My birth name is Cathie but I also go by the name of "The Fairylady". Here I am in 2005, a 51 year old female who has successfully recovered from a nasty, rare Connective Tissue disease named Dermatomyositis. I consider myself to be 100% recovered - IN TOTAL REMISSION and very lucky. I have no symptoms of Dermatomyositis or Fibromyalgia anymore! I'm completely off antibiotics. My improvement is reflected not only by the way I feel but by in my blood work results:
February 1996 - SED rate: 57
December 2000 - SED rate: (normal), CPK: 116
December 2000 - CPK (normal)
February 1996 - mycoplasma (positive)
June 2000 - mycoplasma (negative)
Manual muscle strength test scores February 1996 - 2s (0 being paralyzed and 5 being normal)
December 2000 - all 5s (normal) (some of my muscles are actually above normal now - my muscles are stronger than most of the doctors!)
February 1996 - unable to do 1 sit up or lift shoulders off bed
September 2001 - able to do 60 or more fullsitups
February 1996 - very difficult to walk from house to car
September 2001 - able to ballroom dance for 4 hours straight several times a week
February 1996 - could not get up from a squat position
September 2001 - able to get up from a squat position without blinking an eye
I would like to share with you some things that I have learned:
- hope is everything
- energy is a precious gift - spend it wisely
- "dis-ease" brings us to our knees to give us a different view on life and what is really important - understanding the psychospiritual aspects of your disease is very important in recovery
- the body can heal itself of anything if you feed it properly
- listen to your body it will lead you to a diagnosis and recovery
- nurture your soul during your recovery be creative during your rest periods - read, write, paint, doodle or meditate
- love yourself like you were your own best friend
- read about your illness and medications - knowledge is power
- doctor shop - don't stop searching until you find the one that feels right
- use your doctor as a resource/aid not as a cure - challenge them and ask many questions
- a person with a chronic illness needs support - seek counseling from a professional therapist and join a support group
My primary illness was Dermatomyositis. I also suffered from several secondary illnesses: Clinical Depression, Sjogrens, Fibromyalgia and Raynauds.
Dermatomyositis is a connective tissue disease that if left untreated could cause death within 3 - 5 years. Inflammation occurs in the joints, muscles and sometimes organs. This inflammation causes muscle wasting and atrophy. The main areas that are affected are the shoulder and hip girdle and the throat. Having weakened hip girdle muscles creates difficulty getting up from the floor when you are lying or sitting down. Plus you have to use your hands for support when you get up from a soft chair or couch. Having weakened shoulder girdle muscles creates difficulty doing things like hanging up a heavy coat or holding your arms up to curl your hair. When the throat is affected you frequently feel a choking sensation and have a problem swallowing. One's skin develops a rash that is red, splotchy and very itchy. This rash is usually found on the chest, arms, hands, face and scalp. Fatigue is a big problem and sometimes you can only do one thing a day - like you can't make a meal and eat it to - you're just too tired.
Brief Medical history:
I went into a severe clinical depression August 1994. One year later August 1995 I fell off an 8 foot ladder and landed on my hip and hand. Immediately after the fall I suffered from symptoms of Fibromyalgia plus I noticed a red, itchy chest rash, difficulty keeping my balance, falling down and difficulty getting up. I found it more and more difficult to keep up in Step Aerobics class and other physical activities. In December of 1995 I collapsed and had to quit my 50-70 hour a week job of Event Coordinating. At my annual check up in February 1996 my doctor noticed that something was really wrong - my muscles fell away from the bone - my connective tissues were affected. I began the "medical test roller coaster ride" and after every blood and urine test known to man, an EMG and finally a muscle biopsy I was diagnosed in April 1996. I started taking the traditional method of treatment for one year. I then started on the "Road Back" in May 1997.
Initial course of traditional medications:
Started traditional therapy of steroids - (20 mg. Medrol) and chemotherapy - (7.5 mg. Methotrexate) in May 1996.
Increased Methotrexate to 18mg by August 1996.
Tapered off of steroids slowly over months and finally took my last pill on March 24, 1996.
Discontinued Methotrexate "cold turkey" and took the last injection on April 8, 1996.
What I experienced the year I was on traditional treatment:
Although these medications helped with reducing the inflammation and cleared up the rash it was achieved at great personal cost. After 2 months of being on steroids I went into a "medication induced" clinical depression. The following are the side effects I experienced: moon face, gained 1000000 pounds, depression, inability to concentrate or think clearly, facial hair growth, breast enlargement, abdomen distention (moon tummy) and stretch marks, muscle weakness and numbness in arms and hands and legs and feet to the point that if I had continued I would have been wheelchair bound. Also lung damage, dry cough, shortness of breath and reduction of air capacity, glaucoma, cataracts, reflux stomach acid, "medication induced" early menopause, acne, high blood pressure and high cholesterol.
After stopping these medications eventually everything, except for the cataracts have returned to normal. Behind every cloud there is a silver lining.
"The Fairylady" story.
I had been blessed with pleasant looks and great legs. As a result of these drugs and disease I felt fat, deformed and ugly - my self-esteem plummeted to an all time low. I was desperate to find beauty somewhere within this foreign body. There is always a silver lining behind each cloud. I started searching within myself and found my soul and my very frightened inner child. I needed to nurture that soul and comfort that inner child. I wandered into a craft store one day and fell in love with a picture of a flower fairy - it reminded me of what I looked like back in the hippie days when I had long blond hair, and was slim and attractive. I wanted to recreate that beauty and that fairy and found the tools to do it and went at it full steam ahead. Now I had something else to focus on besides my pain. Each time I would paint her I felt such love. What a gift - I discovered something much more important than physically beauty - I discovered inner beauty. I decided to share my love and started to sell my "goods" as a way of nurturing other souls - thus the birth of "The Fairylady". My career of a crafter was very short lived by choice and I no longer paint her - but I wear my "Fairylady T-shirt" with pride and it is a reminder to me of where I have come from and how far I've gone. I look at my body now through different eyes - I no longer see the flaws such as slightly chubby thighs - I see legs that are in perfect working condition.
I felt that traditional therapy was not serving me well so I began my search. A fellow myositis sufferer named Lianne, introduced me to a book called the "Arthritis Breakthrough" by Henry Scammell and Thomas McPherson Brown. I will always be eternally grateful to her for her encouragement. I read it and it made sense - finally something that addressed the cause of my illness and not just the symptoms. I joined the online support group (email@example.com) and observed and connected with the people that were soon to become my life line support. I connected deeply with the leader of the group, Ethel Snooks, and she recommended that I seek out professional help to guide me on my journey. I remember the words - "If you were my daughter I'd have you in Dr. Franco's office tomorrow". Based on her advice I went to see Dr. Franco, Riverside, California (Al Robert Franco, 4000 14th Street, Suite 511, 92501 USA phone #909-788-0850) - who is the most experienced rheumatologist in treating arthritic diseases with the antibiotic therapy. I had to travel to another country, at my own expense, at a time that I didn't even want to get out of bed, but it was the best move I ever made. He tenderly examined me and gave his full attention - I felt like I was his top priority in life then thoroughly answered all my questions and prescribed meds, supplements, diet and exercise specifically for me. He stressed the importance of dealing with this condition holistically - not one thing was going to make the difference but a combination of things. The importance of having body, mind and spirit in balance. The most important thing he did for me was he gave me hope. His approach was so different from any other medical person I had previously contacted. All of a sudden the death sentence I'd been given faded away and my healing began.
I was very lucky to have a primary caregiver here in Canada that was somewhat willing to go along with my non-traditional treatment. I then started on the antibiotic therapy of doxycycline 200 mg. (Vibratabs) on May 22, 1997. I had IV therapy in December 1997 to December 1999 - intravenous clindamycin 300mg, 600mg, 900mg, in a 7 day cycle every 4 weeks as well as the supplements prescribed by Dr. Franco:
*Omega 3 & 6 oils (9 per day in divided doses with food)
*Collagenics (6 per day in between meals) (which is a specially prepared mix of Vitamins and Herbs
Pycnogenol (depends on your weight - I use the cream form)
Acidophilus - Enteric coated (4 at 7 a.m.)
Vitamins E 400mg of d-alpha, d-beta, d- gamma tocapherols (1 at dinner)
Ester- C (3 per day with 2 meals and at bedtime)
a multivitamin (no iron) (1 at noon)
Calcium /Magnesium*(2 per day at noon and dinner)
1000 mg of Microcrystalline Hydroxyapatite)
*Fibroplex (for Fibromyalgia)
digestive enzymes (1-3 before each meal)
Slippery Elm (2 at dinner) for leaky gut)
L-glutamine (2 at 7 a.m. and 2 in the afternoon)
Chlorophyll (eye dropper full in a large glass of water with morning pills)
Vit B complex (1 per day at noon)
Amino Acids (4 per day - 2 at noon and dinner)
*I used Candida Plus herbal supplement to help rid myself of Candida infection (brand name T & K Natural which includes Tamarind, Circe, Oregon Grape Root, Pau D'Arco, Echinacea, Garlic.
products marked * are purchased through Dr. Franco's office.
I recommend people seek proper advice from a Herbalist/Naturopath regarding supplement/vitamins etc. These are specific to each individual and should not be taken lightly. Ensure you purchase a good brand - some are less superior than others. These are as important as prescription medication. The purpose of these are to boost your immune system to assist the antibiotics in destroying the mycoplasma infection.
I made changes to my diet according to Dr. Mercola's and Dr. Franco's recommendations. Examples of diet changes:
- consume lots of organic fresh veggies and fruit
- buy fresh organic field greens instead of lettuce
- spice up your food with fresh herbs such as fresh mint, oregano, parsley, cilantro instead of dried herbs
- eliminate refined sugar intake and substitute small amounts of raw unpasturized honey or Eco sugar
- use homemade fruit syrup instead of "Old Tyme" syrup
- buy/make Kamut or Spelt organic bread products instead of supermarket wheat bread
- use whole grain pastas such as Brown rice, Kamut or Spelt instead of regular
- choose short grain brown rice instead of white rice
- consume rice cakes, spring roll rice skins and rice, rye or sesame crackers instead of wheat products
- consume small amounts of soy milk, rice dream or almond milk instead of dairy
- consume tofu, tempeh, miso soup - they can be used for breakfast, lunch or dinner
Body work I received on a very regular basis: full body massages, reflexology, Japanese acupressure - Shiatsu. These treatments help in pain management and toxin release. I can't say enough good things about body work - I feel it mandatory for survival. I found it very helpful to get "hands on" feedback about the condition of my body - they always noticed the improvements and that comforted me. The healing, nurturing touch from trained hands is a precious gift of love.
Exercise - Acquasizes - I could do them even when it was too difficult to walk - you can do almost anything in warm water. I found this exercise to be an excellent way to keep my joints "oiled". I attended Fibromyalgia aqua classes which are gentle exercises that include cardio and stretching. I have worked up to attending deep water acquasizes 2 classes per week and can perform the exercises with ease. I am totally addicted to ballroom dancing and dance everything from the Cha Cha to Quick Step several times a week. I can literally do any exercise I want and am thrilled at how my sleep and mood has improved. Stretching - very important to keep range of motion - do it everyday. Slow pace walks - start slow but be consistent every day - outdoors if possible. I started off having trouble walking from the house to the car, now I am able to work out at the gym - 30 minutes at a good clip (sometimes even a jog) on the treadmill, 15 minutes on the stationery bike, 10 minutes. on cross trainer and go for 60 minute fast paced walks.
I kept a medical journal of my progress of the first year on the antibiotic treatment . This year was full of ups and downs - 2 steps forward, 3 steps back. I included the highlights and the struggles.
Overall review: I had 2 not bad months, then 3 really bad months, then again a good month, followed by 3 pretty bad months, then 2 much better months. My herx reactions were months in duration and my good periods lasted 1 month or more at a time.
After I returned from Riverside I was told by my Canadian Rheumatologist that I was crazy for considering this treatment and in fact he predicted that in 3 months I would be so ill that I would have to be put in the hospital requiring emergency care. I would be put on high doses of steroids, Imuran and all sorts of other equally toxic medications as a form of crisis management. I fired that doctor and to this day I have never been admitted to the hospital nor did I require any crisis intervention. The very itchy, splotchy, red rash came back and spread to my face, arms, hands and fingers. I felt nauseous - hangover like. My muscles were very sore and my joints were stiff and achy. My feet hurt to walk, throat very weak and had a hard time swallowing. I was drop dead tired and required lots of sleep and rest.
The "herx" reaction was very apparent in my brain. Cognitive problems such as poor concentration, brain fog and word mix ups were getting worse. Brutal fatigue - needed lots of sleep. My eyelids turned purple and started to droop again. I was diagnosed with Sjogrens - glandular swelling of cheeks, neck, general sinus area, dry mouth and eyes. Sun exposure worsened the rash. Squeezing pressure in chest that made it hard to get enough air into lungs. I found it hard to swallow. I was depressed and my spirits low so I increased my Anti-depressant medication (Luvox) to 250 mg.) Highlight - one day I got off at the wrong bus stop - I was 1/2 mile from home - YIKES! Without even thinking I started to walk home then part way home I stopped and said - I can't do this! Reality set in, I didn't really have a choice either I lay down on the sidewalk or walk so I walked 1/2 mile home. Guess what, I made it and realized that my muscle strength was getting better which confirmed that yes, this therapy was really working! I went to the doctor and my manual muscle strength test score "3s" and "4s", an improvement.
Big time Herx reaction. Overall a bad month. Went on vacation down to the lake. I was in a basic funk. I started losing the hair on my head again.
Overall a bad month. I suffered from panic and anxiety attacks and poor sleeps. I was low in energy and very tired - would have preferred to stay in bed. It was hard to even do my stretching exercises in the mornings. The pain in my muscles felt similar to that of excess lactic acid and every joint burned. I was sore from head to toe but not as bad as flare up in March. Emotionally I was numb, had brain fog , memory loss and crying jags. The hair loss continued but at a slower rate. The rash spread relentlessly -my scalp was very itchy, the skin on my arms very rough, thick and tough. My stomach burned and I was nauseous. My chest felt tight - like a "Mac" truck had parked on it. I suffered from throat spasms that often happened in public places. I experienced ringing in my ears. Highlights - I now could do 2 things a day - anything more and I got very overtired. I went for a 30 minute slow walk in the park - major progress. My blood work showed I now had a normal Sed rate of 20.
Overall a bad month. I felt sluggish and very tired. My muscles felt like cement. Although my blood work didn't reflect it my liver and kidney felt like they were in distress. The joint pain became tolerable. The throat spasms scared me. My stomach really burned from stomach acid reflux. I changed my medication to coated doxycycline "Vibratabs" - that helped. I had major fluid retention. My breasts hurt - the shower even hurt. The rash still bad and it spread to my thighs. I was sick to death of my thinning hair so dyed it bright pink - then when I looked in the mirror, I didn't see thinning hair - I saw bright pink hair and that made me laugh. I didn't like the way I felt emotionally dead, so I reduced my Luvox back down to 200 mg and my spirits picked up.
Overall a pretty good month. I had a constant dull headache. My rash spread to my lower legs and was very itchy. I still had an anxiety problem and continued to have panic attacks. I still required lots of rest. Highlights - swallowing was getting easier. My head was clearer I experienced some reprieve from the pain. My spirits were good. I had more energy and was able to be more active.
Overall a pretty bad month. I felt brain dead and very depressed. I had sinus pain and my knees hurt and my muscles felt like cement. I started the first round of IV cycle. The herx reaction started 2 days after the 7 day cycle was completed. I woke up with a very puffy face, rash very itchy, and required continuous sleep for days - I thought I had the plague. I suffered a bit from cramps and loose stools and sore throat. The herx reaction lasted for 10 days then disappeared.
Overall a pretty bad month. I had sore feet and a sore, red, raw throat. I was still fatigued and required lots of sleep. Emotionally I was low and felt tense. I had a PICC line inserted into arm for IV treatment. My body rejected it and my Fibro flared up - I had it removed. The herx reaction was different in that I felt very tired after each daily treatment and needed to nap for couple of hours or more. The heart burn increased and became very uncomfortable. My rash flared up and was especially itchy on my scalp and lower legs.
Overall a pretty bad month. Stomach acid was at its all time worst and I started taking Prevacid a stomach acid neutralizing medication with success. The throat spasms were still bothersome. My joints hurt and I had a dull headache. I was depressed. The herx reaction was similar to the January cycle. I was very tired after each IV's injection and required lots of sleep. Highlight - after the herx reaction subsided my rash faded even more and it was completely gone on my chest and upper arms.
Overall a good month. My breathing problems persisted and I'd wake up in early morning completely out of breath and had to gasp for air. I felt more dehydrated than normal even though I was still drinking tons of filtered water. I still had fitful sleeps and increased anxiety. The herx reaction was a little different - I felt tired after each cycle but only took a couple of naps. My sleep pattern seemed to be disrupted and I was unable to achieve a refreshing sleeps. The itching was less severe this time. This herx reaction included more chills and hot spells. Highlights - less tired and able to be more active. My joints were less stiff. My spirits certainly improved. My muscle strength test scores were now "5s" and "4.5". I was finally able to do 3 sit ups. I commented to my rheumatologist - "and they say this treatment doesn't work - I beg to differ". My doctor's response was - "well, what can I say?" I started feeling more sociable and was in good spirits.
Overall a good month. Highlights - after the herx reaction subsided my rash faded even more but still itchy scalp. I was diagnosed with a Candida infection - I treated it successfully with a herb called "Candida plus", Candida diet and colon cleansing. I was able to be more physically active and accomplish a number of things in a day as long as I really paced myself. My rash is almost gone with exception of lower arms, hands and fingers. The throat spasms were not as frequent.
The second year of my healing journey was full of more "ups" than "downs". It is now June 2005 and would like to share with you my current status and thoughts.
My emotional health fluctuates. The depression still haunts me now and then. 2005 has been a very emotionally stressful year . IÕm afraid that sometimes I donÕt take care of myself by overworking myself. IÕm still making up for so much lost time I guess. Sometimes I ignore all the signs that my body is under stress and voila Š the depression brings me to my knees again so that I am forced to rest. I have tried unsuccessfully to get off of anti-depressants many, many times. There still must be more to heal. Although I am unhappy about taking these drugs I consider myself lucky that they have the depression under control most of the time. My emotional healing was achieved through intensive psychotherapy which addressed a number of unresolved emotional issues. I really benefited from taking Cognitive Behavior Therapy to learn new practical ways to think. I surround myself with loving, nurturing people and have given up my old unhealthy lifestyle. I have read many informative books on depression, anxiety and fears. Books like "Feel the Fear and do it Anyway" by Susan Jeffers and " The Feeling Good Handbook by - David Burns, MD were very helpful. I highly recommend reading the book "Hoffers law of Natural Nutrition" by Dr. Abram Hoffer and " 7 Weeks to Emotional Healing "by Joan Mathews Larsen, the "Dark Side of the Light Chasers" by Debbie Ford and "Excuse Me Your Life is Waiting" by Lynn Grabhorn.
I have reclaimed my spirit - I am now at peace with myself and have nurtured my soul back to health. I attended weekly group meditation and yoga sessions and have benefited from this practice. I have read many inspiring books by authors such as Louise Hay , Caroline Myss and Patch Adams. I loved the books "Celestine Prophecy" and "Eastern Body Western Mind".
My energy levels fluctuates Š I feel most energetic in the fall and winter months Š not as good in the spring and summer. When the depression hits IÕm very fatigued. IÕm finding that my muscle strength has improved by going to ŅCurvesÓ. Mind you I don't think I'd win any arm wrestling competitions. I still love hiking, gardening, cooking and entertaining. I highly recommend Pilates for regaining tummy muscle strength. My rash only remains slightly on my hands and face but is not itchy anymore and I have a healthy full head of hair. My swallowing problems have disappeared. The Fibromyalgia symptoms have completely disappeared- I'm sleeping well and my muscles don't hurt. I no longer have general joint pain but still do suffer from some lower back/hip pain. This summer with the 30 out of 45 days of rain I must admit my joints are pretty sore Š but so are completely healthy peopleÕs. All my blood work is back normal with the exception of my ANA which is still positive. To look at me now you would never know that I'd been so sick.
Career and Personal
I have graduated from the Canadian School of Natural Nutrition and am currently practicing as a Registered Holistic Nutritionist. I am teaching "whole food education" to the public and loving it.
I happily support people that suffer from myositis and want to learn about the antibiotic treatment Feel free to contact me via email at firstname.lastname@example.org. Due to so much junk mail and viruses please put the word 'dermatomyositis' or ŅDMÓ in the subject line of your email. Due to my current work schedule it may take some time to get back to you - much appreciate your patience. Spreading hope to others is my passion and consider it an honor to have been chosen for this purpose. I know that a natural cure for these diseases is right around the corner but until then this therapy is by far the kinder and gentler treatment. My strong will has contributed greatly to my success and I look forward to a long and healthy life and many more life adventures.
THIS THERAPY WORKS - I'M LIVING, BREATHING PROOF!
You can reach me at email@example.com
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