Re: Do the antibiotics stop working after extended use?

July 22, 2004

I have been on AP for three years now. I can safely say that my body,

especially my stomach, is very much happier than when I was on the other DMARDS

and pain relievers. Many of my joints have slowly gone back to normal although a

few will always stay deformed. Do I enjoy being on antibiotics....NO! If

this were a perfect world, someone would have found a cure for this disease, and

I would not be on any meds at all.

Unfortunately this is not the case and I will continue to take AP or some

variation of it as long as it keeps me functioning. When I first went on AP,

a gentlemen from North Carolina emailed me. He had been on AP for 40 years.

He wanted the name of my doctor as he had outlived Dr Brown, and two others

and now needed a source for minocin. He was still farming and functioning in

his 80's. If I can do as well I will be grateful.

For me the least amount of meds is the best. The least hazardous to my

health is best of all. AP fills this premise. After talking to many

pharmacists, all agree that if the minocin is working for me, it is the best med

by

far to be on. Two doctors, one a radiologist and the other a general

practitioner, have taken my docs name and phone number after seeing how very

well I

have done on this therapy. Everyone must make their own decisions and live with

the consequences......I have certainly done a whole lot better in the last

three years than I ever dreamed possible. Martha

July 22, 2004

In a message dated 7/22/2004 4:31:39 PM Eastern Standard Time,

kglg@... writes:

Does it not make sense, then, that Enbrel

used along with Minocin should be able to control excess inflammation while

Minocin is treating the mycoplasma cause?

Not really. Check the side effects of Enbrel (or Remicade, Humira,

Kineret), pretty much all the same. They suppress the immune system and

infections,

even life threatening infections can occur. I know all too well.

Suppressing the immune system can be particularly bad if you have other

illnesses as well as RA, such as thyroid disease.

Jill

July 22, 2004

I agree that the antibiotics probably don't work for everyone. At the same

time the other DMARDS don't work for everyone either. I'm one who can't take

the Remicade, Enbrel etc.

Jill

July 22, 2004

> Not really. Check the side effects of Enbrel (or Remicade, Humira,

> Kineret), pretty much all the same. They suppress the immune system and

infections,

> even life threatening infections can occur. I know all too well.

>

> Suppressing the immune system can be particularly bad if you have other

> illnesses as well as RA, such as thyroid disease.

>

> Jill

>

I understand what you are saying. Unfortunately, there are people out there

with severe disease which has affected and permanently damaged every joint.

There are rare cases where the RA affects organs. And there are some people

for whom antibiotics do not work. Even Dr. Brown admitted that. What is

the right answer? Should they continue to watch the destruction because

they don't want to try something--yes, something with possible serious

side-effects--or should they try to buy some time in preventing further

permanent damage to find an approach that works? Not an easy choice. No

one really has the answers. For a few joints that are mildly affected,

there is no need for the powerful meds, and these people certainly have a

window during which they can afford to experiment.

And then there are the quality of life issues. I know of someone, an

artist, who was unable to do anything for 10 years until he found Enbrel.

He is now doing art shows of his work. He made the conscious decision to

take a chance. I know of someone else who was literally cured after 6

months on Enbrel. She was examined and is being followed by many skeptical

doctors. On the other hand, someone on this list knows a person who died

from an infection after Enbrel. Look at the side-effects of aspirin or

Tylenol--yes, people have died from Tylenol and complications from aspirin.

There are exceptions to everything and no easy answers. I personally

believe in the AP. The best approach is the least toxic one and doing

everything we can to support our bodies, but keep in mind there are people

for whom this doesn't work.

July 22, 2004

Your comments raise two important factors in RA: the frustration of trying

to understand the disease process and the many questions about it. I have

some comments which may or may not be helpful embedded below...

> Excess? What mechanism tells it when to stop and what is excess TNF?

From...

I believe the point here is that not all TNF is " mopped up " .

> So are TNF levels

> measured before administering the drug?

It must have been done in research and actually can be measured through labs

like Great Smokies, but it is very expensive, too much so to be used as

screening tests unless the patient wants to pay.

>

> I really don't believe that I have any better answers than anyone else

here

> it's just that some of the explanations of RA's actions have led me to

> believe that this is just a dumpster disease. Anything that looks like RA

> must be RA regardless of what it really might be.

My doctor is very critical of the way some doctors make the diagnosis and

feels that what appears to some doctors as RA is really not. It can be a

very

difficult disease for some doctors to diagnose.

> My doc has spent no more than 10 minutes with me at any

> appointment, usually it is less time than that.

Clearly, we need more time than this when the disease can have such

devastating effects.

>

> The confused immune system thing just doesn't cut it with me either

because

> I have problems with only 2 - 3 joints. If my immune system was " confused "

> then why does it only snack on my right knee and my left wrist and on

> occasion my right foot? To my knowlegde, my immune system uses my blood

> stream and lymphatic system to combat invaders EVERYWHERE, so why one knee

> and not the other.... why one wrist and not the other... hmmm?

A lot of people question the confused immune system now. My doctor says

they have found that there must be an environmental factors that stress the

immune system, a trigger like a virus or

a bacteria and a genetic predisposition. I don't think anyone knows why

some joints are affected and not others. RA tends to affect the feet and

hands first and is symmetrical i.e. perhaps at the start, one ankle might

be affected, but as the disease progresses, the other ankle will be

affected.

I just wish more research would go into finding more information on the

cause rather than all the money that is spent on controlling symptoms.

July 22, 2004

Re: rheumatic Do the antibiotics stop working after extended use?

>Did you ever consider taking a probiotic?

>Ellen

Yes and from my personal experiences it would seem to be just about as useful

as yogurt except it's not food and ya never know how " live " the bacteria truely

is. I can hear it now so I'll address it now, even your or their (whoever's)

popular yet expensive brand was only tested at the " lab " before it was shipped.

Who knows how useful it is after it's gotten to you? Yogurt is pretty much

guaranteed to have live cultures and it's also food (YUK).

Here's something that I recently discovered after I went a little fun...gal.

Brush your tounge well with mouthwash then with water until most all of the scum

is off of it (white nasty tasting scum...fungus/yeast). Then take a big spoonful

of Yukgurt and swirl it around in your mouth, coating everything well then

swallow but don't rinse or drink anything for a while. I thought of this after I

talked to a doctor friend of mine and told him that I was chasing it with water

because it tasted so Yuk. He reminded me that your digestive tract starts at the

insides of your lips so chasing the yukgurt with water wouldn't help repopulate

my mouth. This same doc kinda shook his head when I was talking about

probiotics... long story short he said yukgurt is probably more useful. Don't

use the flavored kind it's not as useful for this purpose because it has sugars

and other crap in it. My tongue cleared up in two days when I did this after

putting up with the nasty taste and dry scummy sore mouth for a few weeks.

>Dr. Brown's experience with patients isn't enough for you to consider the

M-W-F a safe protocol?

I did the MWF thing for about 14 months with little in the way of success, I

didn't get any worse but I didn't get any better. Then my rheumy put me on

sulfazine, omygod who pulled the plug(tired) and hammered my knee(swelling)?

Then I went off it and noticed that the swelling went down and I felt better.

So, I did it again and again I felt better after I stopped taking it. Then I did

it again and broke out in a case of hives from hell, so no more sulfa drugs.

Well what am I gonna do now I thought? Then I found the " cocktail " in this group

but all I could get was the flagyl and mino, my rheumy chuckled when I asked for

nizoral and asked me if I wanted to be the doc. So I tried the twosome and WOW

almost all of the swelling is gone but now I was really fungal. By the way, the

flagyl really kicks yer butt... tired.. bloated.. upset stomach... sleepy for

days and gas from hell. I asked my doc friend for nizoral and all he'd give me

was nystatin because nizoral can cause some big problems and if you take it you

are supposed to be monitored (blood tests) while you are on it and my

rheumy/healthplan won't go for it. So now I pulse dose the two of them together,

this is the fourth time and I can hardly see any swelling in my knee. It used to

be kinda like having a watermellon strapped around my knee. I am off celebrex

from 200 BID barely controlling the pain. I even have no use for vicodin which I

only took when I was in extreme pain.

As far as it's safety, well, like I said earlier... good/bad... antibiotics

don't know the difference, they kill em all as long as they are within the

spectrum of their effectiveness. Since we are all just a big bag of mostly water

and various bacteria it can't be good to be on them continuously for really long

periods of time without a break here and there and repopulating with hopefully

the good ones only. JMHO

To sum it up... I think everybody is a little different and responds a little

differently to meds.

July 22, 2004

Re: rheumatic Do the antibiotics stop working after extended use?

> some people on the AP took over two years to get a turn around in their

> symptoms. Patience is a must on this protocol.

> Carol

Or switch things around and try different approaches while keeping mino in

the mix, it has been working for me. I really have to thank the person who

pointed out the " cocktail " it has been VERY beneficial so far.

July 22, 2004

Re: rheumatic Do the antibiotics stop working after extended use?

try taking freeze dried green black walnut hull to get rid of the yeast.

it's from dr. hulda clark's book " the cure for all diseases. " it's

really helped me get a handle on the yeast problem. you can get some by

going to www.store.com and typing in " green black walnut hull. "

it has helped me tremendously. i took it twice a day for two weeks and

now take it once a day to keep the yeast at bay.

jeanette

I've got some of that and some oregano oil and some caprylic acid and .....

lots of supplemental crap. I've used a lot of this kind of stuff in the last

two years but the tongue brushing thing has worked much faster at least in

my mouth. I was amazed at how fast that worked. I added oregano oil to that

mix and the results were pretty much the same. As I said earlier, I try a

lot of things and I've tried as much as possible to gauge their effects.

July 23, 2004

" To sum it up... I think everybody is a little different and responds a little

differently to meds. "

I think you're right. About the yogurt vs. probiotic, my daughter tries to

avoid dairy; hence, the probiotic.

Ellen

Re: rheumatic Do the antibiotics stop working after extended use?

>Did you ever consider taking a probiotic?

>Ellen

Yes and from my personal experiences it would seem to be just about as

useful as yogurt except it's not food and ya never know how " live " the bacteria

truely is. I can hear it now so I'll address it now, even your or their

(whoever's) popular yet expensive brand was only tested at the " lab " before it

was shipped. Who knows how useful it is after it's gotten to you? Yogurt is

pretty much guaranteed to have live cultures and it's also food (YUK).