Re: Re: Dermatomyositis testing

[Guest guest]

Ethel,

 

is there a test that can determen if a child has also dermatomyositis if the

parent has it?

 

Regards,

Eva

From: Ethel Snooks <emsnooks@...>

Subject: Re: rheumatic Re: mycoplasma test question

rheumatic

Date: Wednesday, April 15, 2009, 8:04 AM

, click on this link for the info -

http://www.rheumati c.org/studies. htm

rheumatic Re: mycoplasma test question

> Emma,

>

> Thanks so much for the information. Is there a citation or link you can

> give me to Dr. Brown's research and information about cell wall deficient

> bacteria that I can show to my doctor? He is very open minded, but just

> doesn't have the expertise in this area.

>

> Thanks,

> a

>

>

>

>>

>> >

>> >

>> > In December 2008 I began taking 250 mg erythromycin twice daily. I am

>> > breastfeeding so can't take tetracyclines. At that time, prior to

>> > beginning

>> > antibiotics, my rheumatologist ran ASO, streptozyme and mycoplasma

>> > pneumonia

>> > tests. ASO and streptozyme were positive for strep A, and mycoplasma

>> > was

>> > negative. I know I was exposed to mycloplasma in Jan 2008 (2 of my kids

>> > had

>> > it) so I was surprised at that result.

>> >

>> > I am currently on 11mg prednisone daily, tapering 1mg every 2 weeks,

>> > and

>> > receiving IVIG treatments once every 2 weeks. I am feeling great now. I

>> > was

>> > having a flare of dermatomyositis in Dec. when I began the antibiotics.

>> > I

>> > also began the IVIG and raised my dose to 30mg prednisone at that time.

>> > I

>> > don't know if my improvement is due to the AP or the IVIG.

>> >

>> > Recently the rheumatologist said to stop antibiotics because a 10 week

>> > course should kill off anything. (I know this is contradictory to AP

>> > protocol). He ran the tests again. ASO and streptozyme are still

>> > positive,

>> > but he said that I just have the antibodies from a previous infection.

>> > Mycoplasma is now positive! Does that mean that I have been exposed to

>> > mycoplasma since last Dec.? What is the false negative rate for this

>> > test?

>> > Should I continue the AP? I am confused.

>> >

>> > a

>> >

>> >

>> >

>>

>>

>>

[Guest guest]

Eva, just because a parent has an inflammatory rheumatic disease, does not

mean the child will have it as well. However, if you were carrying the

organisms that cause these diseases when you gave birth to the child (or

actually had the disease at the time), there is a possibility the child will

come down with an inflammatory rheumatic disease - not necessarily

dermatomyositis.

Dr. Brown felt that pregnant woman should be tested for these organisms, and

if found, should be given an appropriate course of antibiotics. Back in

the mid 90's the Reader's Digest use to feature a news in medicine page. I

don't remember who submitted the article, but it stated that pregnant women

should be tested for strep prior to giving birth. If found, the baby

should be given an appropriate course of antibiotics after birth. I've

never heard of anyone being so tested.

The best way to avoid your child coming down with one of these diseases is

to give her a strong immune system through healthy diet, good sleeping

habits, exercise, and, in these days, appropriate supplements.

While we are on the subject, be aware that these organisms cause more

disease than just the rheumatic type. When I was suffering so badly with

polymyositis, my physician (now Chief of Rheumatology at the University of

California) warned me I had to be on the lookout for cancer. Sure enough I

was eventually diagnosed with a blood disease - a forerunner to three very

serious forms of cancer for which to this day there is no effective

conventional therapy for the blood disease nor the cancers. I did manage

to put the blood disease in remission.

When we first started RBF, I use to keep track of patients and their

progress, and a number of them either had the rheumatic disease first and

then a form of cancer, or cancer first and then a rheumatic disease. I

would also hear of a spouse coming down with one rheumatic disease and the

other spouse with another rheumatic disease. It was then I learned these

organisms are passed through body fluids.

The stronger your immune system, the less chance you have of being diagnosed

with one of these diseases.

Ethel

rheumatic Re: mycoplasma test question

> Emma,

>

> Thanks so much for the information. Is there a citation or link you can

> give me to Dr. Brown's research and information about cell wall deficient

> bacteria that I can show to my doctor? He is very open minded, but just

> doesn't have the expertise in this area.

>

> Thanks,

> a

>

>

>

>>

>> >

>> >

>> > In December 2008 I began taking 250 mg erythromycin twice daily. I am

>> > breastfeeding so can't take tetracyclines. At that time, prior to

>> > beginning

>> > antibiotics, my rheumatologist ran ASO, streptozyme and mycoplasma

>> > pneumonia

>> > tests. ASO and streptozyme were positive for strep A, and mycoplasma

>> > was

>> > negative. I know I was exposed to mycloplasma in Jan 2008 (2 of my kids

>> > had

>> > it) so I was surprised at that result.

>> >

>> > I am currently on 11mg prednisone daily, tapering 1mg every 2 weeks,

>> > and

>> > receiving IVIG treatments once every 2 weeks. I am feeling great now. I

>> > was

>> > having a flare of dermatomyositis in Dec. when I began the antibiotics.

>> > I

>> > also began the IVIG and raised my dose to 30mg prednisone at that time.

>> > I

>> > don't know if my improvement is due to the AP or the IVIG.

>> >

>> > Recently the rheumatologist said to stop antibiotics because a 10 week

>> > course should kill off anything. (I know this is contradictory to AP

>> > protocol). He ran the tests again. ASO and streptozyme are still

>> > positive,

>> > but he said that I just have the antibodies from a previous infection.

>> > Mycoplasma is now positive! Does that mean that I have been exposed to

>> > mycoplasma since last Dec.? What is the false negative rate for this

>> > test?

>> > Should I continue the AP? I am confused.

>> >

>> > a

>> >

>> >

>> >

>>

>>

>>

[Guest guest]

Actually, they do test for strep (Group during pregnancy.  And if it is

present, antibiotics are given during the birth. 

From: Ethel Snooks <emsnooks@...>

Subject: Re: rheumatic Re: mycoplasma test question

rheumatic

Date: Wednesday, April 15, 2009, 8:04 AM

, click on this link for the info -

http://www.rheumati c.org/studies. htm

rheumatic Re: mycoplasma test question

> Emma,

>

> Thanks so much for the information. Is there a citation or link you can

> give me to Dr. Brown's research and information about cell wall deficient

> bacteria that I can show to my doctor? He is very open minded, but just

> doesn't have the expertise in this area.

>

> Thanks,

> a

>

>

>

>>

>> >

>> >

>> > In December 2008 I began taking 250 mg erythromycin twice daily. I am

>> > breastfeeding so can't take tetracyclines. At that time, prior to

>> > beginning

>> > antibiotics, my rheumatologist ran ASO, streptozyme and mycoplasma

>> > pneumonia

>> > tests. ASO and streptozyme were positive for strep A, and mycoplasma

>> > was

>> > negative. I know I was exposed to mycloplasma in Jan 2008 (2 of my kids

>> > had

>> > it) so I was surprised at that result.

>> >

>> > I am currently on 11mg prednisone daily, tapering 1mg every 2 weeks,

>> > and

>> > receiving IVIG treatments once every 2 weeks. I am feeling great now. I

>> > was

>> > having a flare of dermatomyositis in Dec. when I began the antibiotics.

>> > I

>> > also began the IVIG and raised my dose to 30mg prednisone at that time.

>> > I

>> > don't know if my improvement is due to the AP or the IVIG.

>> >

>> > Recently the rheumatologist said to stop antibiotics because a 10 week

>> > course should kill off anything. (I know this is contradictory to AP

>> > protocol). He ran the tests again. ASO and streptozyme are still

>> > positive,

>> > but he said that I just have the antibodies from a previous infection.

>> > Mycoplasma is now positive! Does that mean that I have been exposed to

>> > mycoplasma since last Dec.? What is the false negative rate for this

>> > test?

>> > Should I continue the AP? I am confused.

>> >

>> > a

>> >

>> >

>> >

>>

>>

>>