Re: Re: 9 months and not much progress

[Guest guest]

Ean, you are absolutely correct.  You must learn all you can about how the

immune system functions.  Read the books by  Henry Scammell & Dr. Tomas

MacPherson Brown, pioneers in the field.  Get the faq sheet on A/P frequently

asked questions.  Don't take anything that is an immune suppressant.  You need

an intact immune system in order to fight off infections.  If your doctor does

not agree with a long term low dose antibiotic treatment, find another doctor

who does.  If need be, go to an infectious disease doctor.  Yes, you need to get

frequently tested as you go along and will develop many symptoms.  These

L-shaped micoplasmas will infect the entire body making the patient very ill. 

These infections are deadly.  Take this very seriously.  It will be a full time

job just trying to remain alive.  You will have to be the strong one and be very

supportive.  I could not have made it without my husband by my side.  It is a

very long journey

with many ups and downs.  It is like no other illness I have ever seen. 

Depression & anger are part of the package.  You both must rise above that.  Not

easy!  Good luck to both of you.  Stay informed, stay focused on regaining good

health.  It will happen and don't ever give up.  Her life depends on it.  The

best to you both,  Dolores & Mike

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Re: 9 months and not much progress

rheumatic

Date: Wednesday, September 2, 2009, 8:17 PM

 

Beth, my wife (Lupus & polymyocitis, recently diagnosed) is going in to ask her

PCP if he is willing to take her on for the antibiotic therapy, on Friday. I am

by " NO " means an expert in any of this yet, but it does seem to me that there

are so many variables involved that are different and unique to each individual,

that constant investigation by your physician is a given. From what I have read,

things working out the first time around are not the norm to be assumed. I would

expect that we will have to be analyzing, testing & adjusting throughout the

treatment process. I am hoping that having these folks on this forum available

for counsel will be a major resource. I also am expecting that we will have to

be reading all the articles on the website and also those that are suggested in

addition. It is apparent that the medical community has evolved parallel to the

legal community in that they are all more interested in maintaining the status

quo rather

that moving boldly ahead and doing what's right, regardless if you are invested

in it or not. In other words, " we're on our own in this ,baby " ! So don't give

up. Hopefully you have a true partner in your current physician and the two of

you can figure out what needs to be done. Hopefully, there are those on this

site that will have some answers for you. Best of luck to you.

>

> I've been on AP for 9 months now.  I had a huge flare when I first started

followed by a small amount of improvement.  Since then, I've had no more

improvement and in fact, I feel like I'm getting worse again.  Any ideas as to

what may be going on?  I'm about ready to give up on it, but I have no idea what

I would take if I do give up.

>

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[Guest guest]

You're welcome!  Take it all one day at a time.  Before you know it, you will be

on your way.  Give each other lots of air.  Disease is not only hard on the sick

person, it could be deadly for the caregiver also.  And definitely, talking

everything out is very therapeutic.  Hang on!---Dolores & Mike

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Re: 9 months and not much progress

rheumatic

Date: Thursday, September 3, 2009, 6:36 AM

 

Dolores, thank you for the encouragement. It just so happens that last night was

a bad one (depressed and dispondent) for my wife. I let her tell me how and what

she was feeling and she felt a lot better afterword. Imagine my surprise when I

found your response in my emails this morning. I forwarded it on to her so that

she can read it later on today and know that others are having the same problems

too. Thanks again.

> >

> > I've been on AP for 9 months now.  I had a huge flare when I first started

followed by a small amount of improvement.  Since then, I've had no more

improvement and in fact, I feel like I'm getting worse again.  Any ideas as to

what may be going on?  I'm about ready to give up on it, but I have no idea what

I would take if I do give up.

> >

> >

> >

> >

> >