Re: writing your experiences on ABX

[Guest guest]

I think all information is great and keeps us all thinking even tho' some of us

have other diseases within the auto-immune label.  Even if some of the

information is erronous, we should research everything on the computer.  This is

a wonderful age we live in that we can communicate with the rest of the world

and get all the medical info from anywhere. And also, not all therapies are for

everyone. I wish that were the case.  It would make getting better so much

easier.  To me, the most important thing is to not lose sight of the cause while

searching for treatment of the symptoms.  While taking ABX's, there are side

effects that come like hyperpigmentation or Lupus like symptoms.  In my case,

just taking the ABX took care of most of the symptoms and one by one they

subsided on their own.  Some folks are not that lucky.  So, it is good to

share both the herxes and the successes.

Like you all, we want the whole picture so we can compare or know what may be

ahead of us.  Also, we should keep a positive state of mind and stay happy.  A

good belly laugh is so cathartic.  Writing is my catharsis.  Find what gives you

joy and you're half way home.  Good luck to all.  Dolores & Mike  

From: shogajuice <shogajuice@...>

Subject: rheumatic writing your experiences on ABX

rheumatic

Date: Monday, November 10, 2008, 5:32 PM

I THINK THAT WOULD BE GREAT TO HEAR ABOUT ANYONES SUCCESS ON AP! I

PERSONALLY FEEL IT WOULD HELP TO KEEP THE REST OF US MOTIVATED AND

HOPEFUL!

[Guest guest]

>

> I THINK THAT WOULD BE GREAT TO HEAR ABOUT ANYONES SUCCESS ON AP! I

> PERSONALLY FEEL IT WOULD HELP TO KEEP THE REST OF US MOTIVATED AND

> HOPEFUL!

>

I was diagnosed with RA in late summer 2006, after 5 months of flares.

Because I visited this site and was lucky enough to be referred to

Hammel's book citing Dr Brown's studies on the use of antibiotics for

RA, I went to my Dr. in December and asked to start on Minocyn (to

that point he had me start with simple Motrin megadoses). He said OK,

and I started with 100mg a day, 7 days a week. Within 2 weeks the

flares had noticeably lessened. Within a month they were gone

completely. I had previously developed a list of my " forbidden foods "

- foods that seemed to cause flare-ups for me (my list does not match

the often cited lists I see on the net...so I would recommend people

work very hard to find out what foods bother them...mine included all

pork products, oranges, cooked eggs, all niteshade vegetables, and

popped corn - but not cooked corn. Go figure).

After a few months, I slowly started reintroducing some of those

foods...with no ill effects. Within 6 months I had no reactions to any

foods, no flares at all, and was taking the Minocin only Monday thru

Friday, resting my liver and kidneys on the weekends. All was

wonderful. Then I started getting a joint pain...not a flare, a pain.

Minocin will do that, sometimes. So the Dr. switched me to Vibramycin.

No problem, the joint problem faded slowly away, all was good. Then I

switched to a generic tablet. Still good. Then to a generic capsule

(my local pharmacy did not carry the tablets). AFter about six weeks

on the capsules, I had a flare. Then, another. I hastily switched back

to Minocin...flares stopped, but another joint started swelling. So

back to the doxycycline...until just a month ago, when I realized it

was the switch to CAPSULES that precipitated the return of the RA

symptoms. So I switched back to the TABS...and also added in a host of

supplements. Very slowly seeing improvement. Will see my Dr. in a

couple weeks, am going to go back to the brand name...even tho it

costs 10x as much, my health is worth it!! Generics are a key

problem...the same pharmacy actually gave me different brands of

generics for the same drug. The active ingredient may be the same, but

the delivery system may be just slightly different...maybe the

molecules are a little larger, and the stuff does not penetrate the

joint area as well...who knows. Anyhow, I will stick with this...the

other options are just too scary! I just spoke with someone this

weekend who had been using Minocin for 10 yrs to treat her RA. She

quit 2 yrs ago because it was staining her teeth. So far, she has held

steady. Not totally without symptoms, but the symptoms are relatively

mild. I strongly urge anyone recently diagnosed to go with the

antibiotic treatments...it works best if you start it early. Best of

luck to all....

[Guest guest]

That was a great testimonial for ABX therapy.  I wish you a continued  journey

toward optimum health.  And congratulate you on your perseverence to find the

right combo.  Sometimes it is not the medication but the gel cap and what it is

made of that can make a difference.  and sometimes it may be the ingredients in

the generic brands.  You were very wise to think of that and experiment.  Food

for thought helps us all. Thank you Dolores & Mike

From: mousetit123 <mousetit123@...>

Subject: rheumatic Re: writing your experiences on ABX

rheumatic

Date: Tuesday, November 11, 2008, 8:34 PM

>

> I THINK THAT WOULD BE GREAT TO HEAR ABOUT ANYONES SUCCESS ON AP! I

> PERSONALLY FEEL IT WOULD HELP TO KEEP THE REST OF US MOTIVATED AND

> HOPEFUL!

>

I was diagnosed with RA in late summer 2006, after 5 months of flares.

Because I visited this site and was lucky enough to be referred to

Hammel's book citing Dr Brown's studies on the use of antibiotics for

RA, I went to my Dr. in December and asked to start on Minocyn (to

that point he had me start with simple Motrin megadoses). He said OK,

and I started with 100mg a day, 7 days a week. Within 2 weeks the

flares had noticeably lessened. Within a month they were gone

completely. I had previously developed a list of my " forbidden foods "

- foods that seemed to cause flare-ups for me (my list does not match

the often cited lists I see on the net...so I would recommend people

work very hard to find out what foods bother them...mine included all

pork products, oranges, cooked eggs, all niteshade vegetables, and

popped corn - but not cooked corn. Go figure).

After a few months, I slowly started reintroducing some of those

foods...with no ill effects. Within 6 months I had no reactions to any

foods, no flares at all, and was taking the Minocin only Monday thru

Friday, resting my liver and kidneys on the weekends. All was

wonderful. Then I started getting a joint pain...not a flare, a pain.

Minocin will do that, sometimes. So the Dr. switched me to Vibramycin.

No problem, the joint problem faded slowly away, all was good. Then I

switched to a generic tablet. Still good. Then to a generic capsule

(my local pharmacy did not carry the tablets). AFter about six weeks

on the capsules, I had a flare. Then, another. I hastily switched back

to Minocin...flares stopped, but another joint started swelling. So

back to the doxycycline. ..until just a month ago, when I realized it

was the switch to CAPSULES that precipitated the return of the RA

symptoms. So I switched back to the TABS...and also added in a host of

supplements. Very slowly seeing improvement. Will see my Dr. in a

couple weeks, am going to go back to the brand name...even tho it

costs 10x as much, my health is worth it!! Generics are a key

problem...the same pharmacy actually gave me different brands of

generics for the same drug. The active ingredient may be the same, but

the delivery system may be just slightly different... maybe the

molecules are a little larger, and the stuff does not penetrate the

joint area as well...who knows. Anyhow, I will stick with this...the

other options are just too scary! I just spoke with someone this

weekend who had been using Minocin for 10 yrs to treat her RA. She

quit 2 yrs ago because it was staining her teeth. So far, she has held

steady. Not totally without symptoms, but the symptoms are relatively

mild. I strongly urge anyone recently diagnosed to go with the

antibiotic treatments.. .it works best if you start it early. Best of

luck to all....

[Guest guest]

I'm glad someone is interested in ABX. The scleroderma group I

belong to won't even allow posts about abx because they claim a

clinical trial proved it doesn't work. Meanwhile my dr put me back

on Minocyclin because the CREST Syndrome I have calms down on

Minocycline plus that particular abx has an anti-inflammatory

component to it plus anti-viral. I have multiple viruses that keep

coming back..HHV6,7 & 8, EBV and B19. B19 is the biggy because I've

had the rash come back 3 times in past couple years. I have a high

positive titer for it too. I've also had Lyme disease so I believe

in abx. My dr says since he heard about using Minocycline for RA he

started a number of patients on it and has seen improvement in a

good percentage of them.

So I'm glad someone wants to talk about AP. I'm a big fan of

Minocycline.

>

> I THINK THAT WOULD BE GREAT TO HEAR ABOUT ANYONES SUCCESS ON AP! I

> PERSONALLY FEEL IT WOULD HELP TO KEEP THE REST OF US MOTIVATED AND

> HOPEFUL!

>

[Guest guest]

Go to the RBFBB--That is   Roadbackfoundation.org.The BB stands for bulletin

board.  They talk about ABX often and there is where I learned about it myself. 

I went into remission after 18 months of being on it.  People who have

scleroderma do well with ABX.  I am not so sure about R/A and I've heard that

people with Lupus may have an adverse reaction.  It would be great to do more

research on it and definitely read the books by Henry Scammell and Dr.

McPherson Brown.  They were the pioneers who discover the Micoplasmas.  They are

Cell Wall Deficient and can penetrate the Immune cells.  When enough immune

cells are disabled, then the healthy cells can no longer do the job of getting

rid of them.  That is where Minocin comes in to play and helps the body by not

allowing the micoplasmas to replicate.  I may not have it all correct, but that

is the basic reason for ABX.  There are many protocols out there which include

Minocin.  I

did wonderfully and feel that Minocin actually saved my life.  A lovely lady on

that site is the one who told me about it.  Most docs have not accepted the ABX

treatment yet.  They still hang on to the Steroids, like Prednisone,

Methotrexate, Cytoxin and Chemo drugs. I totally refused when they were offered

to me.  My cousin died of Lupus and he was on all those toxic meds and they did

nothing for him.. All they did was prolong his agony.  I have a friend whose doc

put her on those meds and she is now on the lung transplant list.  She is in a

scooter with contiuous oxygen.  She looks exhausted.  I hope she gets her new

lungs soon.  Yet, I hate to wish that as someone has to die in order for her to

live.  How sad!---Let's hear from others who are on or want to start on ABX and

from those who tried it and were not successful.  There are two sides to every

coin!  Take care, Dolores & Mike 

From: tickmeister1 <wtptoo@...>

Subject: rheumatic Re: writing your experiences on ABX

rheumatic

Date: Thursday, November 13, 2008, 11:36 AM

I'm glad someone is interested in ABX. The scleroderma group I

belong to won't even allow posts about abx because they claim a

clinical trial proved it doesn't work. Meanwhile my dr put me back

on Minocyclin because the CREST Syndrome I have calms down on

Minocycline plus that particular abx has an anti-inflammatory

component to it plus anti-viral. I have multiple viruses that keep

coming back..HHV6,7 & 8, EBV and B19. B19 is the biggy because I've

had the rash come back 3 times in past couple years. I have a high

positive titer for it too. I've also had Lyme disease so I believe

in abx. My dr says since he heard about using Minocycline for RA he

started a number of patients on it and has seen improvement in a

good percentage of them.

So I'm glad someone wants to talk about AP. I'm a big fan of

Minocycline.

>

> I THINK THAT WOULD BE GREAT TO HEAR ABOUT ANYONES SUCCESS ON AP! I

> PERSONALLY FEEL IT WOULD HELP TO KEEP THE REST OF US MOTIVATED AND

> HOPEFUL!

>

[Guest guest]

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[Guest guest]

I was on ABX and it worked beautifully for me. I have Polymyositis. I chose to

take Azrithromycin (Zpac) and to skip all of the toxic drugs that we offered to

me. I had almost immediate positive results. I took the ABX for 2 years and have

been off all treatment for a year and a half. I have my aches and pain but I

think that I can attribute that to age and no brains! I play league tennis,

whitewater kayak, hike and ski. I am still working on building muscle but am

doing very well.

 

I highly recommend the Azithromycin, since the side affects are minimal to

non-existant. With this antibiotic you take lower doses since it stays in the

system for a longer period of time. I started taking 250 mgs everyother day

within 9 months dropped it back to 250 mgs twice a week and continued with that

for another 9 months. I then dropped it down to 250 mgs once a week for 6

months. After the 6 months I stopped taking the ABX, so far I have not had any

flares (knock on wood!) and that has bee a year and a half.

Robbin

From: mousetit123 <mousetit123@...>

Subject: rheumatic Re: writing your experiences on ABX

rheumatic

Date: Monday, November 17, 2008, 1:34 PM

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[Guest guest]

Robbin, how about writing your story for our website - www.rheumatic.org?

There are others of you on this list that have success stories to tell as

well. Not only would your story be an encouragement to others looking for

help or contemplating the use of this therapy, but it also gives evidence to

the medical community of how well this therapy actually works. While

scientific studies have been done using antibiotics in RA - plus a small

study using minocyline in scleroderma, no studies have been done using

antibiotics in the other inflammatory rheumatic diseases - nor are they ever

likely to be done. However, we've been told 100 stories using antibiotics

for each of these diseases is equivalent to a scientific study. We've still

got a long ways to go.

Ethel

rheumatic Re: writing your experiences on ABX

rheumatic

Date: Monday, November 17, 2008, 1:34 PM

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[Guest guest]

I have been working on it but work is crazy. I will try to complete it soon and

forward on to you.

Robbin

From: mousetit123 <mousetit123>

Subject: rheumatic Re: writing your experiences on ABX

rheumatic@grou ps.com

Date: Monday, November 17, 2008, 1:34 PM

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[Guest guest]

I can't help but think the various autoimmune and rheumatic diseases

might mostly be caused by Lyme disease. It took years of suffering

the same mysterious symptoms before I followed a friend to her Lyme

specialist and discovered I had Lyme disease. (though I knew I had

been bitten by ticks many times no one would test me) Of course I

also test positive for CREST Syndrome/Limited Scleroderma whichever

you prefer to call it. I can't help but think somehow its related I

have both these illnesses. I took antibiotics and antifungals for 3

years for Lyme and felt better than I had in years after the first 6

months of initial non-stop Herxheimer reactions. The Lyme specialist

told me I needed about 36 months of ABX; I was feeling better after

that time so stopped ABX. Within 3 months I suddenly felt like CRAP

again after going off the ABX. Since Minocin is also used to treat

autoimmune I was put back on that and am suddenly herxing again like

crazy.

So many of you mention the symptoms that are related to Lyme so I

wonder if some of you folks here have Lyme? Especially those of you

that feel better on ABX. BTW- someone mentioned mycoplasms and ticks

are known to also transmit mycoplasms. Just a thought...

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[Guest guest]

Ethel,

Actually studies have been done on Minocin and RA. I used to get a

medical journal that my friend subscribed me to for Christmas and I

read about the study in that journal where they recommended drs

switch RA treatment to Minocin.

Also another friend is married to a pharmacist so she found some

kind of info about Minocin and RA and took it to our doctor. After

reading whatever my friend gave him he started switching his RA

patients who weren't responding to other meds over to Minocin.

> > >

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AP!

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