Re: 9 months and not much progress

[Guest guest]

Hi Beth,

Well 9 months isn't that long ( I know it feels like it though!). Maybe you are

feeling better than you remember too. Then there are the usual culprits, diet,

yeast that could hold you back. Some people graduate to the Marshall Protocol.

I don't know what to tell you except hang in there. Are you on any other meds?

Sue

---- Beth Fletcher <kbf23@...> wrote:

> 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.

>

>

>

>

>

[Guest guest]

Beth,

get tested for any other infection besides micoplsma. ex: sinus, stomach h.

pylori, strep, uti etc. if cultures are negative, go for blood antibodies. in

dr. Brown's practice he always tested aslo, anti d-nase b strep and he treated

it with ampicillin.

find a doc willing to look at possible infections.

I am not a doc, this situation has happened to me.

good luck

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: kbf23@...

Date: Wed, 2 Sep 2009 08:18:39 -0700

Subject: rheumatic 9 months and not much progress

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.

[Guest guest]

Hi Beth;

Trying to find out the reason that you got sick and correcting it

is really important.Many people have Lyme or Celiac disease as a

cause,not to mention chemical sensitivities and heavytoxic heavy metals

in their systems.You can't really fix a problem until you find the cause.

I know the reasons I got Scleroderma,I was exposed to 25 years of

aircraft fuel fumes,bleach that I used a lot in cleaning and unknown

Celiac disease.One person in a hundred has celiac and that usually leads

to other chronic diseases.I was really surprised to find out that I had

it and then saw the damage it caused.

Lynne G./SD

>

>

>

>

> Hi Beth,

>

> Well 9 months isn't that long ( I know it feels like it though!).

> Maybe you are feeling better than you remember too. Then there are the

> usual culprits, diet, yeast that could hold you back. Some people

> graduate to the Marshall Protocol. I don't know what to tell you

> except hang in there. Are you on any other meds?

>

> Sue

> ---- Beth Fletcher <kbf23@... <mailto:kbf23%40>> wrote:

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

Hi Beth,  9 months is a very short time on A/P.  Micoplasmas and other L-shaped

microorganisms are very slow growing and very slow dying.  Patience is the

biggest virtue in fighting off the disease.  Also, you may have, as many of us

do, some underlying diseaes or causes why you are not progressing.  I have been

on A/P and M/P, which is just another A/P variation since 2005.  I just

converted from an ANA reading of 640 speckled to a negative reading.  That is 4

long years of pain, vomiting, diarrhea, Raynauds, cramping, vitiligo, hair loss,

Pulmonary Fibrosis, heart arythmias, and the list goes on.  I was diagnosed with

scleroderma, but have had so many complications.  I went into remission for a

while and then thought I was ready for MP.  Started that and went down the slide

real fast.  Didn't know what hit me.  I started out bedridden and needed help to

get myself to the bathroom.  It was a long and hard road back.  Just recently my

doctor saw my normal ANA reading, He thought it might be a lab error, so we

repeated the test.  No error!  My ANA is normal.  Because of the inflammation in

the gut, I restarted taking a probiotic before meals and it has made a world of

difference.  We do not fight just one battle, we are being attacked on all

fronts. This is outright bacterial, viral and fungal war and we must keep on

fighting.  Those who give up face a miserable life and eventual early death with

no quality of life in between  Yes, many times I wanted to give up. But, I could

find no alternative and the ones not on A/P have died.  Scary!  I kept on and so

glad I did.  These rheumatic type of diseases are like a roller-coaster ride.  

You think you feel better and in a split second, you could be bending over in

pain.  Today, I am so much better.  I can travel, have fun, go out, and enjoy

life with family & friends.  I look back at where I was.  Some docs gave me 5

months to live back in 2005.  Now, they are so impressed at my comeback that

they put my husband on antibiotics.  He's feeling like crap now and I keep

explaining that these are the reactions of the body called Herxes.  I was

lucky.  I was so sick at one time that I couldn't tell the differences between

the herxes and the diseases that were killing me.  My e:mail is to encourage you

to keep on and read everything.  This site, the roadback site, read books,

articles, everything you can get a hold of.  You must fight like your life

depends on it because it does.  9 months is not enough time to see much of a

difference.  It sometimes takes several years and some of us need to repeat the

A/P from time to time throughout our lives as re-infection can and often does

occur.  Stay with it.  It is swim or sink.  Please don't sink.  We are here to

help you. We are also fighting the same battle and know how discouraging it is

to feel like we are

failing.  But keep up the fight.  You will be rewarded.  Also, seek a doc who

understands and is willing to work with you.  I switched from Rheumatic docs to

Internal Medicine docs and finally ended up with an Infectious disease doc. 

After all, what I have is an Infectious Disease. He understands, I understand

and now I am winning the war.  Good luck to you and keep checking for those

underlying diseases that can slow down the progress.  Best to you, Dolores   

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

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.

>

>

>

>

>

[Guest guest]

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.

> >

> >

> >

> >

> >

[Guest guest]

Hi Dolores,

very nice inspiring letter, also very true.

how did you find the infectious disease doc willing to look into your illness?

what did he test you for and how, cultures, serum?

thank you again for your heart felt letter

Ana

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Wednesday, September 2, 2009 1:47:46 PM

Subject: Re: rheumatic 9 months and not much progress

 

Hi Beth,  9 months is a very short time on A/P.  Micoplasmas and other L-shaped

microorganisms are very slow growing and very slow dying.  Patience is the

biggest virtue in fighting off the disease.  Also, you may have, as many of us

do, some underlying diseaes or causes why you are not progressing.  I have been

on A/P and M/P, which is just another A/P variation since 2005.  I just

converted from an ANA reading of 640 speckled to a negative reading.  That is 4

long years of pain, vomiting, diarrhea, Raynauds, cramping, vitiligo, hair loss,

Pulmonary Fibrosis, heart arythmias, and the list goes on.  I was diagnosed with

scleroderma, but have had so many complications.  I went into remission for a

while and then thought I was ready for MP.  Started that and went down the slide

real fast.  Didn't know what hit me.  I started out bedridden and needed help to

get myself to the bathroom.  It was a long and hard road back.  Just recently my

doctor saw my normal ANA reading, He thought it might be a lab error, so we

repeated the test.  No error!  My ANA is normal.  Because of the inflammation in

the gut, I restarted taking a probiotic before meals and it has made a world of

difference.  We do not fight just one battle, we are being attacked on all

fronts. This is outright bacterial, viral and fungal war and we must keep on

fighting.  Those who give up face a miserable life and eventual early death with

no quality of life in between  Yes, many times I wanted to give up. But, I could

find no alternative and the ones not on A/P have died.  Scary!  I kept on and so

glad I did.  These rheumatic type of diseases are like a roller-coaster  ride.  

You think you feel better and in a split second, you could be bending over in

pain.  Today, I am so much better.  I can travel, have fun, go out, and enjoy

life with family & friends.  I look back at where I was.  Some docs gave me 5

months to live back in 2005.  Now, they are so impressed at my comeback that

they put my husband on antibiotics.  He's feeling like crap now and I keep

explaining that these are the reactions of the body called Herxes.  I was

lucky.  I was so sick at one time that I couldn't tell the differences between

the herxes and the diseases that were killing me.  My e:mail is to encourage you

to keep on and read everything.  This site, the roadback site, read books,

articles, everything you can get a hold of.  You must fight like your life

depends on it because it does.  9 months is not enough time to see much of a

difference.  It sometimes takes several years and some of us need to repeat the

A/P from time to time throughout our lives as re-infection can and often does

occur.  Stay with it.  It is swim or sink.  Please don't sink.  We are here to

help you. We are also fighting the same battle and know how discouraging  it is

to feel like we are

failing.  But keep up the fight.  You will be rewarded.  Also, seek a doc who

understands and is willing to work with you.  I switched from Rheumatic docs to

Internal Medicine docs and finally ended up with an Infectious disease doc. 

After all, what I have is an Infectious Disease. He understands, I understand

and now I am winning the war.  Good luck to you and keep checking for those

underlying diseases that can slow down the progress.  Best to you, Dolores   

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

Hi Ana.  I got lucky one day!  I was new in town and had made an appointment

with a new Rheumatologist.  I walked into his office with my A/P faq sheet on

Frequently Asked Questions, my M/P list, Dr. Brown and Henry Scammell books

under my arm and  I told the doc that I am treating my scleroderma sucessfully

with antibiotics and would not take an immune suppressant.  He said, he just

came back from a seminar on immune disorders and as much as he would like to

treat me, his hands are tied and he cannot.  But, he said, I know just the

doctor for you. He is an infectious disease doctor upstairs.   The nurse called

and I was seen in 15 minutes.  Then the doc, said to me.  I hope I really hope

you can kick this with antibiotics.  I want you to prove us wrong.  Then he

said, there will be no charge for this visit.  That is how I ended up in the

office of an Infectious Disease doc. 

 

Aside from all the normal tests, he tested me for Micoplasma antibodies and I

was definitely infected.  I also tested positive for anticardiolipin and

antiphospholipin antibodies.  Have had positive results for cytomegalo virus and

Epstein Barr Virus.    Along with all that infectious material in me, I have

diabetes type 2, Sleep Apnea, hypertension, manufacture kidney stones regularly,

had an enlarged liver from CFID, spaces in my spinal chord, an aneurysm in my

artery and heart disease to name a few things.  On top of that I have IBS.   had

a very high triglyceride and cholesterol count.  Little by little, my body is

going back to normal... levels.  My blood work is nearly normal now and my

symptoms are falling by the wayside.  I believe that the A/P is getting rid of

the microorganisms that are causing all the problem.  I believe that the

Minocin, Clindamycin, Azithromycin and sometime Bactrim and Doxy cocktails I

have been on are doing a

great job of cleaning out my system from all toxic emissions from these bugs. 

I am not quite bug free yet, but am well on my way.  Thanks for asking.  Dolores

& Mike

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

Hello Dolores and Mike,

I am impressed.

how lucky, what a chance to come across two well intentioned doctors in one day!

how did the infectious disease doc treat you with mino, azithro, bactrim and

clinda?

how did he spread them out? did he pulsate the meds? how and how much?

would you please describe the protocol?

thanks again,

Ana

________________________________

From: mike rosner <martysfolks2004@...>

rheumatic

Sent: Friday, September 4, 2009 1:10:53 AM

Subject: Re: rheumatic 9 months and not much progress

 

Hi Ana.  I got lucky one day!  I was new in town and had made an appointment

with a new Rheumatologist.  I walked into his office with my A/P faq sheet on

Frequently Asked Questions, my M/P list, Dr. Brown and Henry Scammell books

under my arm and  I told the doc that I am treating my scleroderma sucessfully

with antibiotics and would not take an immune suppressant.  He said, he just

came back from a seminar on immune disorders and as much as he would like to

treat me, his hands are tied and he cannot.  But, he said, I know just the

doctor for you. He is an infectious disease doctor upstairs.   The nurse called

and I was seen in 15 minutes.  Then the doc, said to me.  I hope I really hope

you can kick this with antibiotics.  I want you to prove us wrong.  Then he

said, there will be no charge for this visit.  That is how I ended up in the

office of an Infectious Disease doc. 

 

Aside from all the normal tests, he tested me for Micoplasma antibodies and I

was definitely infected.  I also tested positive for anticardiolipin and

antiphospholipin antibodies.  Have had positive results for cytomegalo virus and

Epstein Barr Virus.    Along with all that infectious material in me, I have

diabetes type 2, Sleep Apnea, hypertension, manufacture kidney stones regularly,

had an enlarged liver from CFID, spaces in my spinal chord, an aneurysm in my

artery and heart disease to name a few things.  On top of that I have IBS.   had

a very high triglyceride and cholesterol count.  Little by little, my body is

going back to normal... levels.  My blood work is nearly normal now and my

symptoms are falling by the wayside.  I believe that the A/P is getting rid of

the microorganisms that are causing all the problem.  I believe that the

Minocin, Clindamycin, Azithromycin and sometime Bactrim and Doxy cocktails I

have been on are doing a

great job of cleaning out my system from all toxic emissions from these bugs.  I

am not quite bug free yet, but am well on my way.  Thanks for asking.  Dolores &

Mike

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

Yes, yes, yes!  We experimented, rotated, pulsed!  Everything!  Left no stone

unturned.  I was on A/P. M/P and learned from this site about overlapping

illnesses which the doctor confirmed.  I learned about herxing and feeling like

crap while knowing that I was gaining in the long run.  Someone on this site

once told me that these diseases are a one-step forward, two steps backward,

roller coaster ride.  Very bumpy!  At times, much progress is achieved and then

it seems like we can never get over the hump.  Antibiotics will work on the

areas of your body with the greatest concentration of microorganisms first. 

Then go to another area totally at an opposite pole.  Different systems in your

body get attacked.  sometimes simulatneously and sometimes individually.  The

neurological warfare is the scariest.  Dizzy spells! Double vision! Mental

confusion! Scrambled thought patterns and speech!  Lack of memory!  Facial

changes! Suddenly

rising from a chair to find that a hip will not support your body!  Happened to

me!  Couldn't walk for 3 months!  Each area of attack brings on different

symptoms.  Welcome the symptoms knowing that the healthy Immune cells are

attacking the unhealthy cells where the bacteria is dwelling.  When the bacteria

die off, there is a toxic emission which really makes you sick.  They are

fighting back because they don't want to die either.  It is either them or you. 

Survival of the fittest.....You may sometimes lose a battle, but don't give in

and lose the war.  Best to you, Dolores & Mike

> > 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.

> >

> >

> >

> >

> >

[Guest guest]

Are you taking the name brand Minocin with the time-release pellets?

I began my antibiotic therapy with 6 months of minocycline (powder capsules),

and though it seemed to stabilize my RA, my rheumatoid

factor was not going down. It wasn't until I started taking the

Minocin with the time-release pellets that my rheumatoid factor

started dropping dramatically....though it still took several years

to get back within normal range. I was diagnosed in

December of 1997, and to this day I am doing fine with the Minocin,

Celebrex, and the OLE (olive leaf extract).

Good 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.

>

>

>

>

>