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Anyone have or know anyone that has been dx with this and later found to have lyme?
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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My husband had a possible dermatomyositis diagnosis, they couldn't quite decide among all the wonderful autoimmune diagnoses - dermatomyositis, mixed connective tissue disease, undifferentiated tissue disease, etc.. He went from a completely healthy marathon runner to an invalid in just a couple of months. A year into this saga he tested positive for Lyme.
Posts: 984 | From San Diego | Registered: Nov 2006
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My friend has it. Not sure if it's inclusion body or not though. She thinks it is. She has been treated with large doses of steroids for almost a year now. I have tried to convince her to have a lyme test and she is thinking about it. She has all kinds of joint, spine issues etc...her myositis has been an "atypical presentation" from the start. All her tests were normal, including CPK which is usually elevated. It was found on a muscle biopsy.
Posts: 340 | From Ohio | Registered: Oct 2005
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Sorry, don't know how to edit posts. If you go to www.roadback.org, it is dedicated to the treatment of autoimmune disease with antibiotics. The preposition behind their site is that mycoplasma causes the disease. You can find stories of people with myositis disease that have recovered with antibiotic protocols.
Posts: 984 | From San Diego | Registered: Nov 2006
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No, it's different. Maybe the source is the same but it expresses itself differently. Myositis causes inflammation and great weakness in the muscles. Dermatomyositis has skin inflammation with weakness in hip girdle and upper arms. All inclusion I'm supposing can have weakness all over.
Posts: 984 | From San Diego | Registered: Nov 2006
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True myositis causes muscle damage and breakdown and can even be fatal. It can cause paralysis of the diaphragm requiring a ventilator. Fibro is pain, fatigue etc...but there is no actual tissue damage going on. I think most people would agree that fibro is just a symptom of something else....
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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I think all those little diagnosis boxes that neurologists put cases into are not all that useful, since no neurological disease has a known cause, or useful treatment. It is their way of fiddling with the disease and appearing to be doing something, but actually not doing anything that helps the patient. And they are overlooking the possible causes, like lyme. Myositis is just an itis of the muscles. What do you know now with the name? Darn little.
Probably neurological diseases have multiple causes. Parkinson's, for example, can be caused by workplace toxins. But since not everyone with P works in a toxic environment, other cases obviously have other causes.
If you talk to people with lyme who saw a lot of doctors beforehand, you will hear a whole laundry list of diagnostic names. And different ones, depending on the doctor. I figure anytime you get five diagnoses from five doctors, no one has a clue. And even if they all agreed, it says nothing about cause or treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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I agree Lou. They don't have a clue...I would rather they said "I don't know" than give it meaningless names like FMS/CFS. I did have a couple who said they didn't know what was wrong with me.
Posts: 340 | From Ohio | Registered: Oct 2005
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I knew someone who was falsely diagnosed with this but she actually had Lyme. They changed the dx to ALS at the end. They did not find out about Lyme until shortly before her death. She died from ALS caused by Lyme.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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