Re: Question re RA & AP mino protocol

[Guest guest]

I think this may be a herx due to the added Flagyl. When did you add the

diflucan? It could also be die off of fungus. You may want to either stop

the Flagyl or take less and see what happens. Do you take acidophilus? Have

you added anything else right before this started? Do not stop the Minocin.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of jeepgadget

Sent: Monday, February 15, 2010 5:21 PM

rheumatic

Subject: rheumatic Question re RA & AP mino protocol

Hi,

I'm 37 and was finally dx 4-16-2009 after many years of feet/hip/shoulder

pain since childhood. Rheummy dx is as RA (RF 20, Anti CCP 250). I had just

had a baby 12-24-2008 and in April my left thumb froze & hurt like hell. I

also had incredible fatigue. Started MTX 4-16-2009. Quit MTX 6-2009 due to

severe bronchitis (3 rounds of antibiotics), 1/3 of hair loss, sores on

legs. Started Minocycline in 7-2009 100 mg M-W-F. Added Difulcan 100 mg Tu,

Th. Recently added Flagyl 500 my Sa,Sun. I take lots of supplements

(Physician prescribed and supervised) including fish oil, tart cherry

extract, ALA, etc.

My RF is less and 3, CRP is less than 3, and my Anti CCP is down to 76. I

have never herxed, just slowly improved but.....

Lately I'm having lots of mild to moderate varied pain in every joint of my

body. It travels all over day and night. I feel that this is not a herx. and

that I'm getting worse. My Dr. and I are stumped. Is this likely disease

progression? Any suggestions?

[Guest guest]

----- Original Message -----

From: " jeepgadget " <vonda3d@...>

Sent: Monday, February 15, 2010 5:20 PM

> Hi,

>

> I'm 37 and was finally dx 4-16-2009 after many years of feet/hip/shoulder

> pain since childhood. Rheummy dx is as RA (RF 20, Anti CCP 250). I had

> just had a baby 12-24-2008 and in April my left thumb froze & hurt like

> hell. I also had incredible fatigue. Started MTX 4-16-2009. Quit MTX

> 6-2009 due to severe bronchitis (3 rounds of antibiotics), 1/3 of hair

> loss, sores on legs. Started Minocycline in 7-2009 100 mg M-W-F. Added

> Difulcan 100 mg Tu, Th. Recently added Flagyl 500 my Sa,Sun. I take lots

> of supplements (Physician prescribed and supervised) including fish oil,

> tart cherry extract, ALA, etc.

>

> My RF is less and 3, CRP is less than 3, and my Anti CCP is down to 76. I

> have never herxed, just slowly improved but.....

>

> Lately I'm having lots of mild to moderate varied pain in every joint of

> my body. It travels all over day and night. I feel that this is not a

> herx. and that I'm getting worse. My Dr. and I are stumped. Is this

> likely disease progression? Any suggestions?

>

It is not uncommon when on the AP to experience flares on the road back to

wellness. This could be what you are experiencing. I will email you a

chart of the 'progress' of a gorilla with RA on the AP that illustrates this

clearly. Your physician could consider upping the antibiotic dose to twice

a day M-W-F or even 5 days a week until the flare subsides.

Make sure you are drinking LOTS of water and your bowels are moving

regularly to rid the body of the toxins.

Are you on the brand name Minocin or the generic minocycline? That can make

a difference.

Since you are taken Diflucan and Flagyl, make sure your physician checks

your liver enzymes regularly.

Ethel

[Guest guest]

I started the Flagyl 2 months ago and the Diflucan about 6 months ago. I

take an excellent probiotic also in addition to tons of supplements

prescribed by my physician. My diet is good and I exercise as much as my body

allows. I also work 40+ hours per week in the OR as a perioperative RN. I'm

concerned because the pain is not only in the joints but in the muscles of

the forearms. All day and night traveling pain.

Is there anyone with RF+ and Anti CCP+ rheumatoid arthritis who's reached

and maintained remission with this or any antibiotic treatment for a number

of years? I need an encouraging story to get me through this difficult

time.

Thanks so much

[Guest guest]

Vonda, go to rheumatic.org and check out the medical histories. Usually

people who have negative results post their stories. At this time my results

have been negative for about 10 years. Yes I am having some joint problems

at this time as you probably have read… but I have been symptom free for 12

years. I messed up this summer….too many goodies (sugar is a bad thing for

us) and I stopped my Minocin. My husband also has this “hobby” of

woodworking and I am exposed to lots of paint and other chemicals that he

uses. I addition I may have been exposed to a different mycoplasma (yes that

can happen). So I am talking to the doc that prescribes my meds to come up

with a plan.

I don’t want to discourage you. There are LOTS of healthy people that have

rheumatic diseases doing their thing all because of antibiotics… but we

don’t hear from them after they feel good! I retired 8 years ago and have

lots of time so I try to give encouragement and answer questions.

Please read our stories…you will feel better.

Hugs,

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of vonda3d@...

Sent: Tuesday, February 16, 2010 4:48 PM

rheumatic

Subject: rheumatic Re: Question re RA & AP mino protocol

I started the Flagyl 2 months ago and the Diflucan about 6 months ago. I

take an excellent probiotic also in addition to tons of supplements

prescribed by my physician. My diet is good and I exercise as much as my

body

allows. I also work 40+ hours per week in the OR as a perioperative RN. I'm

concerned because the pain is not only in the joints but in the muscles of

the forearms. All day and night traveling pain.

Is there anyone with RF+ and Anti CCP+ rheumatoid arthritis who's reached

and maintained remission with this or any antibiotic treatment for a number

of years? I need an encouraging story to get me through this difficult

time.

Thanks so much

[Guest guest]

Hello there on behalf of Vonda.  Here is another story that might encourage you

to go on. In 2004 I was put on Statins because of a high cholesterol count. 

After a very short spell, I noticed that all the muscles in body were aching

more and more each day.  Usually at Christmas my husband puts his Santa Suit on

and I don my elf outfit and we do parties for children.  That Christmas 2004, I

got to the point where I could barely show up and couldn't lift the babies up on

to santas lap. We manage to fulfill all the santa obligations we had comitted

to and with a big sigh of relief I was glad to usher in the New Year quietly at

home.  The first week of January, it happened that my mom was moving into her

new apt. I was not able to even lift a fork, much less any thing else.  The day

the furniture was delivered, I cried all day.  I couldn't lay down nor roll

over in bed without crying out in pain and at 5 in the morning I was begging to

go to the

hospital.  They admitted me with pneumonia, and anemia.  They did many

tests.  Conclusion I had advanced Pulmonary Fibrosis .i was discharged and went

home to bed.  Stayed there for about 8 months and got worse.  It was partly

the pain and depression that my natural exhuberant personality and strength had

somehow disappear.  I could not even turn the doorknob to get into and out of

the bathroom.  I got so bad I needed help with everything. I couldn't hold

down or in any food. It was my habit to see a podiatrist every 6-8 weeks to get

my toenails cut as I am also a diabetic.  While I was in the chair, I broke

down telling the doctor about all my woes and how I did not know what was

wrong with me.  At that point I had lost 40 lbs.  He sent me to a

pulmonologist who thought the Pulmonary Fibrosis was due to some Immune disorder

and referred me to a Rheumatologist. First I went to a Dermatologist because

Vitiligo was appearing on my

forehead.  I also noted that calcium deposites in the form of little white

pebbles were forming just under my skin which was getting tighter and tighter

each day and very hard and shiny and they hurt.  I got ulcers on my lips and

inside the mucosa of my mouth. I was a mess.  The dermatologist said it was

probably scleroderma.  My husband sighed with relief as he thought I had a

cancer problem.  Not knowing anything about scleroderma, I started checking our

computer.  My appointment with the Rheumatologist and Pulmonologist happened to

be in the same office on the same day.  They conferred and brought in some

other docs.  I was told by the group, that day, that my lungs were so badly

damaged that I didn't have long to live.  They said scleroderma is incurable,

but that they could keep me comfortable in the interum by giving me steroids,

chemo therapy and pain killers.   My sadness turned to anger and I decided to

prove them wrong. I sent an

e:;mail to the scleroderma foundation begging for help and got an answer from a

young lady who occasionally posts on this site.   All she said was. " Where

have you been hiding!  Under a rock? Don't you know about the Antibiotic

Protocol.  I was dumbfounded.  She told me she has had scleroderma for ten

years and she was in remission.  I wanted that so badly.  I followed her

advice and a month later I was in Boston in front of Dr.Trentham at Harvard

University.He is head of Rheumatology, a professor and did his fellowship doing

research on arthritic diseases.  All of his patients who were on the antibiotic

protocol were doing great.  I flew home with my prescription of brand name only

Minocin in hand and the next morning I took my first Minocin.capsule of 100mg in

the morning and in the evening  Within 6 months, the joints and muscles no

longer ached.  The Raynauds which hurt so much that I wore gloves in bed, had

disappeard, The vitiligo

stopped advancing, The swollen joints went down.I was amazed.  It is now 4.5

years later.  I still take less minocin and only on MWF.  Today I walked 4

miles on a sloped surface passed waterfalls, horses, and other country life.  I

am living fine with a 55% lung capacity and doing fine as the last x rays showed

a decrease in the Pulmonary Fibrosis.  The best news that I got just a few

weeks ago was that my RF (Rheumatoid Factor) is 0 (normal) down from (38) The

last count was done six  months ago and the ANA (Antinuclearantibodies)

also was 0 down from 1:640.  What's great is that Santa now has his elf back

and we are planning to restart our traditional visits with local children in

hospitals and nursery schools.  Last christmas we did not do any parties as we

were in the midst of moving to a warm climate.  My doctors in New York had

predicted that I would have never lived another winter.  I don't mind, I have

always been cold

intolerant, so we moved to the Tropics.  My trip has not been easy, but it is

the best trip I have ever taken and it has brought Santa & I so much closer

together.  My pulmonologist recently said, I am so happy for you.  We've never

seen a case like this.  We learn something new from our patients every

day..P.S. I am no longer on statins and my cholesterol levels are

normal   Even the diabetes which was out of control so badly that I was put

on injections for a while.  I no longer have to inject Insulin every day and

watch my diet carefully, Dolores & Mike

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic Re: Question re RA & AP mino protocol

rheumatic

Date: Tuesday, February 16, 2010, 5:23 PM

 

Vonda, go to rheumatic.org and check out the medical histories. Usually

people who have negative results post their stories. At this time my results

have been negative for about 10 years. Yes I am having some joint problems

at this time as you probably have read… but I have been symptom free for 12

years. I messed up this summer….too many goodies (sugar is a bad thing for

us) and I stopped my Minocin. My husband also has this “hobby†of

woodworking and I am exposed to lots of paint and other chemicals that he

uses. I addition I may have been exposed to a different mycoplasma (yes that

can happen). So I am talking to the doc that prescribes my meds to come up

with a plan.

I don’t want to discourage you. There are LOTS of healthy people that have

rheumatic diseases doing their thing all because of antibiotics… but we

don’t hear from them after they feel good! I retired 8 years ago and have

lots of time so I try to give encouragement and answer questions.

Please read our stories…you will feel better.

Hugs,

cooky

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of vonda3daol (DOT) com

Sent: Tuesday, February 16, 2010 4:48 PM

rheumatic@grou ps.com

Subject: rheumatic Re: Question re RA & AP mino protocol

I started the Flagyl 2 months ago and the Diflucan about 6 months ago. I

take an excellent probiotic also in addition to tons of supplements

prescribed by my physician. My diet is good and I exercise as much as my

body

allows. I also work 40+ hours per week in the OR as a perioperative RN. I'm

concerned because the pain is not only in the joints but in the muscles of

the forearms. All day and night traveling pain.

Is there anyone with RF+ and Anti CCP+ rheumatoid arthritis who's reached

and maintained remission with this or any antibiotic treatment for a number

of years? I need an encouraging story to get me through this difficult

time.

Thanks so much

[Guest guest]

You may need to checked for polymyositis is dermatomyositis with pain forearms.

On Feb 16, 2010, at 2:47 PM, vonda3d@... wrote:

I started the Flagyl 2 months ago and the Diflucan about 6 months ago. I

take an excellent probiotic also in addition to tons of supplements

prescribed by my physician. My diet is good and I exercise as much as my body

allows. I also work 40+ hours per week in the OR as a perioperative RN. I'm

concerned because the pain is not only in the joints but in the muscles of

the forearms. All day and night traveling pain.

Is there anyone with RF+ and Anti CCP+ rheumatoid arthritis who's reached

and maintained remission with this or any antibiotic treatment for a number

of years? I need an encouraging story to get me through this difficult

time.

Thanks so much