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Old 04-01-2010, 08:23 PM   #1
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I'm living life with polymyositis with the help of low dose antibiotic therapy :)

I started Minocin (minocycline) 100 mg on M,W,F and have been on it for 2 months now. < edited > It was a blessing that I've found this treatment because my family doctor was wanting me to take 60 mg of prednisone daily. Prednisone is bad stuff and doesn't help your disease to go into remission. It just masks the symptoms and doesn't help heal the body like AP Therapy and diet does....I have some stiffness and herx symptoms sometimes from the antibiotic but that only means that the antibiotic is stirring up the bad bacteria that has caused my immune system to become weak. My leg weakness is not as bad as it was. It's 50% better than it was when I became sick and had my muscle biopsy for PM.

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Old 04-13-2010, 07:20 PM   #2
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

Hi, im interested in knowing more about your journey with the thearpy please respond as soon as possible.

 
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Old 04-13-2011, 05:20 PM   #3
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

Hello. I'm happy to find a recent post here. How are you feeling today?

I have not been diagnosed with Polymyositis, but am having an appt set up to begin that process. I have moderate to severe swelling in my upperback, neck and shoulders that is very painful and aggravated with use of those muscles (i.e. cleaning the house, carrying groceries, using the computer--easy tasks).

My legs are just fine, thank God.

My doctor insists I have fibromyalgia, but I don't believe I have simple nerve pain. I have great swelling which presses against my spine, etc, and is very painful.

I'm wondering, do any of you have great swelling in your upper back, shoulders and neck all the way up to your ears and into your head? I read mostly about leg weakness. I'm not sure what I have and am trying to narrow it down.

Thank you all so much.

I'm very tired and in a lot of pain, too, and scared sometimes.


 
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Old 04-14-2011, 06:25 PM   #4
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

I'm doing fine. Been on AP Therapy for 14 months now and my CPK level in 200. This is the best forum where I've met lots of folks that have helped me fine the right treatment for me and the right doctor that can help me with my treatment.

I'm usually stiff in the mornings but it works out during the day. PM affects different muscles at different times. Guess that's why it's name "poly"myositis cause poly means many and myositis means inflamation.

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Old 06-04-2011, 01:03 AM   #5
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

Did you stopped taking Prednisolone ? Now what medications are advised and how's the effect.
My close relative has been dignosed for Polymyositis and advised treatment of Prednisolone 60 mg per day? about 15 days before only some improvement is observed in swollowing but leg lemovement are more difficult

I am in delima how to go about it?

Pl,share your experience in detail

< edited >

Sanjay
India

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Old 06-04-2011, 07:47 AM   #6
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

I take 500 mg zithromax once a week with methotrexate and I feek so much better. My rheumatologist dismissed the idea of anti-biotics so I discussed it with my primary Dr. and he prescribed them to me. I have had PM for a least 4 yrs and maybe more. My CPK# stay around 400. I wish I could get them lower but not with prednisone!

 
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Old 06-28-2011, 08:15 AM   #7
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

hi there!
I am glad to read someone is doing the AP treatment. I have been doing the antibiotic treatment as well and i still take the prednisone to reduce the inflammation. Could you share more of experience with the treatment?

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Old 06-28-2011, 11:17 AM   #8
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Smile Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

I take 500 mg of Zithromax once a week with my weekly dose of metrotrexate. My CPK's stay around the low 400's and I reumtologist seems happy with those numbers. I did take prednisone when I was diagnosed in 2008 with Cpks of 6900. I was on them for about a year. It did havoc with my diabetis numbers.

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Old 08-24-2011, 11:18 AM   #9
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Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

Thanks for the reply. I am taking doxycycline three times a week as well. I also take my weekly methotrexate weekly and i am taking the prednisone 30 mg per day. I am planning on trying to wean of the pred after i go back to the doctor and see how my cpk is doing. I have been taking pred for too long in my opinion and my numbers still very high. I went to the doctor in june and my cpk was 1140.

 
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Old 06-02-2012, 10:30 AM   #10
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Exclamation Re: I'm living life with polymyositis with the help of low dose antibiotic therapy :)

Hello I have been diagnosed with polymyositis as well. I cannot tolerate sterioid treatment or immune suppressant drugs as I have a genetic condition that does not let me metabolize at a normal rate and I become very ill if I take them. Two rheumatologists told me they can do no more for me. I read about low dose antibiotic treatment and would so very much like to try it. The 2 doctors said they will not back me on this. I cannot find a doctor that will perscribe this treatment. My question is, How do I find a doctor that will approve this treatment? My life has become almost non-functional and the pain is intolerable. I do take pain medication but I have taken it for so long that it only gives temporary relieve to the pain. Most of the day I feel like "is this all there is". I cannot pick up my grandson or babysit and I feel useless. Antibiotic treatment sounds like it would work for me but I just don't know how to get the treatment. I have asked 4 doctors and they all say "NO". Can you give me any advise on how to get the treatment? Thank you so much and have a blessed day.
Karen

 
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