Re: antibiotic therapy [was: -more positive results]

[Guest guest]

paulking11@... wrote:

>

> I started antibiotics in may and have had dramatic improvements ever since.

>

Which antibiotic are you taking and at what dosage? What sort of

improvements have you had? And have you made any diet modifications?

I'd love to know because I myself have been on the AP -- Lederle

Minocin, 100mg 2x/day, 7 days/week -- since the end of June and haven't

seen much in the way of improvement yet. Except my Achilles tendon

doesn't bother me now and I don't seem to be getting worse, which I

definitely was up to June.

My PA is in my hands: I have several fingers that won't close all the

way, some soft-tissue pain, wrist pain, assorted enlarged and knobby

knuckles, and one that's _really_ red and swollen. I don't have any

fatigue or depression, which kind of worries me as it seems all the

people I've read about who've had great luck with the AP had these two

particular symptoms, too.

I'm not ready to give up yet. I haven't changed my diet but the feedback

I've been seeing indicates I'd better! :-) I'm also wondering if doxy

might be more effective than mino but until I try some dietary changes I

don't think I'll look into that. The one thing that aggravates me is

that my (well-known and highly touted) AP doctor thinks I should go on

Arava right now and stop the Mino -- he seems totally averse to working

with me to tailor this regimen and by handing me the Arava prescription

makes me doubt his belief in the AP and Dr. Brown's work (this doc also

won't test for mycoplasma and probably wouldn't test for yeast or strep

things either). He has had great results with RA and scleraderma

patients but apparently not with PA; has told me that only 65% of PA

people respond to the AP. I don't want to believe this, especially not

if he's taking a one-size-fits-all approach to the AP, which seems to be

the case.

I understand even the DMARDs (which I've never taken up to now) can take

ages to work, too. I was told the Arava could take 2 months to work, for

pete's sake, and didn't someone (Jim) just post on here that he's been

suffering for 6 years with no improvement?

oh well; looking forward to your (and others'?) replies,

thanks,

--Louise

[Guest guest]

I'm doing the same medication as you, except every other day.

It takes time before you start feeling better. Most people go thru a

hershimer reaction at @ 3 months (appear to get worse for a short period of

time) but that quickly goes away. Most of the 200+ studies on antibiotics

say that improvement really starts @ 6 months and continually gets better

from there.

[Guest guest]

> He has had great results with RA and scleraderma

> patients but apparently not with PA; has told me that only 65% of PA

> people respond to the AP. I don't want to believe this, especially

not

> if he's taking a one-size-fits-all approach to the AP, which seems

to be

> the case.

>

> I understand even the DMARDs (which I've never taken up to now) can

take

> ages to work, too. I was told the Arava could take 2 months to

work, for

> pete's sake, and didn't someone (Jim) just post on here that he's

been

> suffering for 6 years with no improvement?

>

> oh well; looking forward to your (and others'?) replies,

>

> thanks,

> --Louise

Hi Louise- If I got it right, you have been on the AP for less than

four months. I wouldn't discount what your doctor tells you, but

this does seem too quick to give up on it. Everbody's different,

but I had almost no improvement at four months, but by six months

I was doing much better, and after 2 1/2 years now I'm feeling

wonderful. Even if his 65% number is right (I know of no

controlled study with PA) that's two out of three people getting

better- not so bad odds!! -and if he tends to give up quickly,

maybe the odds are really better than his experience. All your

comments seem right on the mark to me.

But-- I'm not a doctor, and this just comes from my experience,

and others I have heard from! These decisions are not easy.

One thing I do remember, though is that somewhere in Dr. Brown's

writings, he stated that RA was the hardest to treat, and non-RA

forms (like PA) responded better and faster to the AP in general.

That doesn't seem to agree with your doc's experience.

very best regards,