posted
Has anyone been diagnosed with this? Should I let my dr treat it with predisone?
I have clinical lyme.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Never take prednisone, this would be a big mistake for you. Lymetwister didn't believe it and tried it and got so much worse.Read the post.
Posts: 1834 | From US | Registered: Oct 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
Polymyositis means multiple muscle inflammation. The cause is unknown (idiopathic).
It is characterized by symmetrical muscle weakness and inflammation, and diagnosed by certain immune and inflammatory markers found on muscle biopsy.
There is no strictly defined diagnostic criteria, or curative treatment. As with most chronic inflammatory conditions, the recommended treatment is steroids. Steroids reduce inflammation, but they don't treat the cause of the inflammation.
Make your own choice, but if it was me, I would refuse the steroids and keep treating Lyme and co-infections.
There are lots of anti-inflammatory herbs and supplements that are good for us in Lyme treatment. I've had excellent results with Turmeric/Curcumin, Green Tea Extract, Glutathione, Fish Oil, Vitamin D, Magnesium, Pomegranate Extract, and Resveratrol. Some people like Pycnogenol.
Sometimes steroids are needed to stop a life-threatening inflammatory process. I have nothing against them. But I think lots of doctors use them as the "band-aid" of internal medicine.
If this doc understands Lyme, s/he would think twice before prescribing steroids.
posted
I was in the hospital for 5 days due to Rhabdomyolysis/Myositis. The Rhabdo is an extreme breakdown of muscle which causes toxins in the blood....resulting in near kidney failure.
Fortunately, my kidneys recovered and no steroids were taken. I'm still a neuro Lyme mess but blood tests remain stable as far as the Rhabdo/Myositis.
In my opinion as well, treating the infections is the key as I believe that is the underlying cause (for me). Also, I was on Bicillin and a very rare side effect is Rhabo; but, to complicate things I've also read Myositis can be another manifestation of LD (what isn't, right?).
That being said, 3 years of abx for me and I'm spinning my wheels. 9 months on IV. I am going to have to come up with a new game plan as I don't think the abx are going to get me remission if they haven't by now, sigh.
Just my experience. Good luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
My doctor thought I had that (about 35 yrs ago) and the test was negative so I got the dx of Fibromyalgia.
Treatment for Lyme and BABESIA resolved my muscle pain.
DO NOT TAKE STEROIDS UNLESS YOUR LIFE IS IN IMMEDIATE DANGER.
Give the abx time to work and make SURE you get tested for babesia and/or get a trial run of babesia meds in case the testing was falsely negative.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont think all docs test for it...what test would it be i wonder
my neighbor was so happy when he got the dx
so happy they knew what it was and how to tx...steroids
and he was painfree very soon and very happy until he crashed and then its the same old same old
i'm sure he has lyme but he is 87 now and just living with it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Burrascano explains the danger of steroids to any lyme patient:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)
posted
I have Polymiositis.....positive the cause is many years of untreated Lyme. I WOULD NOT EVER USE STERIODS for this!
Posts: 348 | From MA | Registered: Dec 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
how do they test for it beagle?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
There is a woman who posts here, whose husband was completely cured of Polymyositis. He was extremely ill, and prednisone made him much, much sicker.
With a good LLMD and appropriate lyme and babesia treatment, along with IVIG later in his recovery, he is 90%. You would never know how sick he was.
You can read some of her posts here on lymenet and also on www.roadback.org. She posts under Parisa.
Posts: 964 | From san diego | Registered: Oct 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Polymositis is caused by Lyme and co-infections!! I have a colleague who was diagnosed with it. I quickly got him to an LLMD, instead of the steroids, and he got tremendously better.
Steroids would just make it far more difficult to ever get rid of Lyme.
tickssuck: when you are as ill as is sounds like you are, and many of us are, it can take a very long time to turn the corner. For some it takes 3 years or more to START to get better, and more years yet to be much better.
That said, not everyone gets better on the same treatments, ie is it time for rife,herbs, etc?? I would say don't give up yet, but look at what isn't being addressed completely;
Posts: 3792 | From around | Registered: Mar 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
What test did they run to diagnosis this and what are your symptoms?
Posts: 1155 | From Southeast | Registered: Oct 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
A cousin was cured of his Polymositis years ago w/ IVIG. He had 3 rounds back in the early 1990's.
My cousin has been bugging me for years to get IVIG for my Lyme/MS. He hasn't had any excerbation nor episodes in 20 yrs.
My new neuro says Polymositis responds very well to IVIG. He says using IVIG for Lyme and/or MS not so clear.
Just a 50/50 chance. This nuero is not a LL but is the first mainstream neuro that didn't yell nor harp on me for not doing those so called MS drugs.
Also he was familiar with Chronic CerebralSpinal Venous Insufficiency (CCSVI) for MS. Said good results with that.
I am cautiously impressed, yet still waiting for the "dang it" moment and I have to dump him as my neuro.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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