Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi
When I was 32 (I am now 49) I was diagnosed with Polymyositis. It was horrible and I wanted to die. I did the steroids and methotrexate until I learned that it was merely a band-aid treatment and it would knock 20 years off of my life because those drugs destroy your liver. I found out about the antibiotic therapythrough Dr Gabe Merkin. I researched it on www.rheumatic.org I was discouraged by the Rheumys. I did it anyway and watched my CK reduce to 45. I am not on any meds and have not been for several years. A huge contributing factor to getting better was becoming totally gluten free. I challenge anyone who doubts that the treatment works to a hot yoga class or a race around the block. You MUST think outside of the box if you want to get better. I will help anyone who seriously wants to get well.
When I was 32 (I am now 49) I was diagnosed with Polymyositis. It was horrible and I wanted to die. I did the steroids and methotrexate until I learned that it was merely a band-aid treatment and it would knock 20 years off of my life because those drugs destroy your liver. I found out about the antibiotic therapythrough Dr Gabe Merkin. I researched it on www.rheumatic.org I was discouraged by the Rheumys. I did it anyway and watched my CK reduce to 45. I am not on any meds and have not been for several years. A huge contributing factor to getting better was becoming totally gluten free. I challenge anyone who doubts that the treatment works to a hot yoga class or a race around the block. You MUST think outside of the box if you want to get better. I will help anyone who seriously wants to get well.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I think some of us are diagnosed with polymyositis because we fit some symptoms, but I'm not convinced it's the correct diagnosis for all because there are so many variables amongst us. I have also noticed that people have DM or PM with other overlapping conditions, and what applies to them may not apply to all.
With that in mind, treatments outside the box may work for some people because they may not actually have "polymyositis".
I don't think studies that refer to arthritis or rheumatism help make your point, IamLianne. Studies that refer directly to Polymyositis would be more beneficial.
And, trpt1, please refer me to where you have seen information stating "having lung/heart issues or cancer since that is the direction this disease will take in a relatively short period of time". Seems you are hell bent that we all succumb to those issues.
Remission is possible with polymyositis. Statistics state that 1 in 5 people will remain symptom free after their initial bout with polymyositis. We may not hear much about those in long-term remission because they have gone on with their lives.
So, I would prefer to live with hope than with the cloud of definitely getting lung, heart or cancer issues. I believe a positive attitude goes a long way.
I would like to think that none of us would head willy-nilly into any course of treatment. We are all researchers, that's why we look at this site and post here and google ourselves silly.
Peace to all.
I think some of us are diagnosed with polymyositis because we fit some symptoms, but I'm not convinced it's the correct diagnosis for all because there are so many variables amongst us. I have also noticed that people have DM or PM with other overlapping conditions, and what applies to them may not apply to all.
With that in mind, treatments outside the box may work for some people because they may not actually have "polymyositis".
I don't think studies that refer to arthritis or rheumatism help make your point, IamLianne. Studies that refer directly to Polymyositis would be more beneficial.
And, trpt1, please refer me to where you have seen information stating "having lung/heart issues or cancer since that is the direction this disease will take in a relatively short period of time". Seems you are hell bent that we all succumb to those issues.
Remission is possible with polymyositis. Statistics state that 1 in 5 people will remain symptom free after their initial bout with polymyositis. We may not hear much about those in long-term remission because they have gone on with their lives.
So, I would prefer to live with hope than with the cloud of definitely getting lung, heart or cancer issues. I believe a positive attitude goes a long way.
I would like to think that none of us would head willy-nilly into any course of treatment. We are all researchers, that's why we look at this site and post here and google ourselves silly.
Peace to all.
I think some of us are diagnosed with polymyositis because we fit some symptoms, but I'm not convinced it's the correct diagnosis for all because there are so many variables amongst us. I have also noticed that people have DM or PM with other overlapping conditions, and what applies to them may not apply to all.
With that in mind, treatments outside the box may work for some people because they may not actually have "polymyositis".
I don't think studies that refer to arthritis or rheumatism help make your point, IamLianne. Studies that refer directly to Polymyositis would be more beneficial.
And, trpt1, please refer me to where you have seen information stating "having lung/heart issues or cancer since that is the direction this disease will take in a relatively short period of time". Seems you are hell bent that we all succumb to those issues.
Remission is possible with polymyositis. Statistics state that 1 in 5 people will remain symptom free after their initial bout with polymyositis. We may not hear much about those in long-term remission because they have gone on with their lives.
So, I would prefer to live with hope than with the cloud of definitely getting lung, heart or cancer issues. I believe a positive attitude goes a long way.
I would like to think that none of us would head willy-nilly into any course of treatment. We are all researchers, that's why we look at this site and post here and google ourselves silly.
Peace to all.
As doctors all over the world request. Please minimize the use of antibiotic for a better world.
Michael PM
Michael PM
I think we all have to come to grips with the fact that PM/DM are not as well-defined as other diseases, they do not always respond predictably, and can have different causes. So no one is saying antibiotics are for everyone, but people need to quit saying that they are completely useless.
My own rheumatologist explained to me that antibiotics are used often for rheumatic diseases and offer some help. He explained that he himself has seen people become asymptomatic after using minocycline. However, it did not work for me. Most doctors are not going to take a chance and instead will put you on immunosuppressants or steroids and OPENLY ADMIT that this is a palliative measure that does not cure you.
You cannot fault someone for wanting to go down a different avenue. Immunosuppressants and steroids are dangerous drugs, so this is not a trivial decision.
And a word on clinical trials: PM is rare. The majority of people stick with conventional meds, therefore the amount of PM patients on antibiotics is so low. AND ANTIBIOTIC THERAPY TAKES A LONG TIME... an effective clinical trial that lasted the appropriate amount of time might not be ethical.
The disadvantage of the antibiotic protocol is higher then his advantage,including creating Bacterias that are Resistance to antibiotics.
Save the world and Go Green. Do not use so much Antibiotics.
Michael PM
Let me say this to your ignorant attitude. First off, if antibiotics actually work for someone, then how dare you say anything about it. The antibiotic treatment is a lengthy one with good cause behind it. Unless you know why we have been put of this kind of treatment then you have nothing to say..... So please don't comment.
Antibiotic resistance comes from people not completely their treatment.
Once again if you have lung issues, at least look into the cordyceps that I have recommended.
Once again, no one is giving any false hope, only education and personal advise on things that have worked or have not worked for them.
Micheal, I'm sure you mean well, but why are you on here if you aren't at least a little curious about something that might help you?
The negative attitudes of some of the people on here don't help at all.
Michael, I'm sure there are people who would rather save their own lives then "go green". Geez.
So, I believe I will discontinue using this site. It has become depressing and who needs that when we are trying to combat an already depressing situation?
I think some people on here like to wallow in the disease and the dire POSSIBILITIES rather than have a positive outlook
People should continue posting alternative treatments since discussing them and being open minded is bound to help somebody.
The bottom line still is that NOBODY has a definitive explanation of polymyositis, so we really don't know what might work in our case. Doctors put us on standard treatment. There may be other things that work and I for one will research and try other possibilities if prednisone stops working for me or if it turns out I have to stay on it long-term.
I do thank those of you who have posted very useful insights.
Good luck, positive atttitudes, and peace to all.
Regardig your knowledge about antibiotic resistance, you are definitely ignorance.
Antibiotic resistance comes from overusing antibiotic prescription.
Kathleen
My attitude is not negative. My goal is to bring to pepoles attention the risks in this controversial therapy.
Until now no one was cured from Polymyositis by this controversial therapy.
I think that the only positive atttitudes is to listen to what Medical centers have to say about this disease, don't be afraid from the conventional therapy.
Peace to all.
Michael PM
I haven't joined this topic because the title really bothers me. I knew I wouldn't agree. So instead of arguing online, I decided to let it run it's course without me.
Please remember that no one here is a medical doctor and each and every persons journey with this disease is different. If you don't like what someone has to say, I suggest you ignore it. If you find you can't, then you can ignore the person permanently and you won't see what they post.
Let's keep this a positive and upbeat supportive group that we can all come share thoughts, learnings, and treatment plans without personally attacking each other.
One other comment to the suggestion that this disease is God's will for us. I believe God goes through the valleys of life with us. His plan for us is to redeem us from this sinful world, that's why Jesus came to earth. And that's why He says he wants us to "have life, and to have it more abundantly." So, in the meantime, many of you are blessing others by being a part of this support group. And some day we'll meet!