Re: Confused and scared...please help.

[Guest guest]

I would not wait for the IV antibiotics, as it may be some time before

someone will approve doing this for you. I would immediately start with what

Dr. W. gave you. If that is what he wants you to begin with, I would

definately go with that. I have a friend who is a nurse, and works for another

doctor at his medical group, and says he is the absolute best. I know he has

helped so many people, and is open to the IV antibiotics, as well as oral

clindamyacin when he feels it is necessary.

I see Dr. T. in Boston, and he would not hear of the IV's, and I've been

asking for them for years, to no avail. I am doing well, and continue to see

small improvements almost daily. They are little things, but total up to a

alot of improvement, and it will be 4 years in February since my diagnosis

of diffuse systemic scleroderma, and I'd been ill for nearly a year prior,

with 9 so-called specialists not having a clue what was wrong with me.

In my opinion, I would start what Dr. W. has prescribed, and if you don't

feel after a reasonable period of time that you are seeing improvement, or if

negative things are continuing, I would approach Dr. W. with what is going

on with you, and tell him of your desire to do IV's, and I doubt he will

refuse.

Best of luck - I understand being confused and scared, and still am at

times. TRY to maintain some kind of calm, and know that we on this site are

going through the same thing right with you, and will advise you as best we

can.

Gail

[Guest guest]

Not every AP doctor starts with the IV. I never had an IV on the AP. So you may

need to start with what the doctor gave you to stop at least the advance of the

DM, because if you don't stop that it will get worse. I talk from experience. I

was using DMARD's for the first three years before I found the antibiotic

protocol but I had already lost a lot of muscle strength and even doing

exercises and walking it is very slow on getting it back. I still walk somewhat

bend over, not as bad as I was last year. Start at least what the doctor gave

you and then do your own research. I joint the Road Back Foundation and found a

lot of help there. Go to: roadback.org  and sign in.

Eva

From: yelunatic <yelunatic@...>

Subject: rheumatic Confused and scared...please help.

rheumatic

Date: Thursday, December 9, 2010, 7:31 AM

 

I saw Dr. W in NJ the other day and he wants to put me on 200mg of

plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried about

this and don't want to wait. I am starting to show signs of Dermatomyocitis that

were not there 2 weeks ago. I thought the AP protocol used IV antibiotics first?

I spoke with Dr. S in Iowa who confirmed that he starts with IV clindomycin and

then goes to Minocin 100mg 2x a day. I then spoke with Dr. T in Boston who said

" stay away from clindomycin, it's a dinosaur. " I am so confused and I feel like

I am getting worse every day and time is a real issue. I am wondering why DR. W

doesnt do the IV, or if he is a full AP dr, or just does it on the side. I am

not even sure if the plaquenil is a good idea. I am thinking that the IV will

work better and faster? I am panicking and thinking of flying out asap to see

Dr. Franco.

On top of this my wife is due to give birth any day and I can't leave her. I

don't know where I would find a Dr here that will do the full IV protocol. I

have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I am so

confused and worried right now. Do I need the IV to start or will my chances of

getting better be reduced if I don't have it? Please help me with all of this

confusion.

[Guest guest]

When I 1st started (1999) a doctor agreed to give me a generic penicillin based

antibiotic (500 mg).  I was able to function for 1 yr w/doing 500 mg every

day.  After a yr (w/o the antibiotic I could not function, foggy memory and had

fainted on twice in public).  As soon as I started the IV's I notice a marked

improvement.  IMO the IV's accelerated me getting better.  The last time I had

an IV was last yr as when ever I felt my body was struggling to fight this

disease I would ask my doc for Rocephin IV (that was what my AP doc started me

on).  I am doing so much better now and no longer live in fear.

 Josie (Dallas TX)

________________________________

From: Eva Holloway <holloway-eva@...>

rheumatic

Sent: Thu, December 9, 2010 8:00:09 AM

Subject: Re: rheumatic Confused and scared...please help.

Not every AP doctor starts with the IV. I never had an IV on the AP. So you may

need to start with what the doctor gave you to stop at least the advance of the

DM, because if you don't stop that it will get worse. I talk from experience. I

was using DMARD's for the first three years before I found the antibiotic

protocol but I had already lost a lot of muscle strength and even doing

exercises and walking it is very slow on getting it back. I still walk somewhat

bend over, not as bad as I was last year. Start at least what the doctor gave

you and then do your own research. I joint the Road Back Foundation and found a

lot of help there. Go to: roadback.org  and sign in.

Eva

From: yelunatic <yelunatic@...>

Subject: rheumatic Confused and scared...please help.

rheumatic

Date: Thursday, December 9, 2010, 7:31 AM

 

 

   

     

     

      I saw Dr. W in NJ the other day and he wants to put me on 200mg of

plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried about

this and don't want to wait. I am starting to show signs of Dermatomyocitis that

were not there 2 weeks ago. I thought the AP protocol used IV antibiotics first?

I spoke with Dr. S in Iowa who confirmed that he starts with IV clindomycin and

then goes to Minocin 100mg 2x a day. I then spoke with Dr. T in Boston who said

" stay away from clindomycin, it's a dinosaur. " I am so confused and I feel like

I am getting worse every day and time is a real issue. I am wondering why DR. W

doesnt do the IV, or if he is a full AP dr, or just does it on the side. I am

not even sure if the plaquenil is a good idea. I am thinking that the IV will

work better and faster? I am panicking and thinking of flying out asap to see

Dr. Franco.

On top of this my wife is due to give birth any day and I can't leave her. I

don't know where I would find a Dr here that will do the full IV protocol. I

have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I am so

confused and worried right now. Do I need the IV to start or will my chances of

getting better be reduced if I don't have it? Please help me with all of this

confusion.

   

   

   

   

 

[Guest guest]

Hello, yelunatic:

It seems You are a young man, so my question is about Your diagnosis:  Do You

have RA or something else?

In any case, a multidisciplinary, multiple-treatment approach is almost

certainly best and I recommend starting at the Mercola site with his advice in

addition to what physicians are doing; we need to take an active role in our

disease management.

I would not be scared of anything but steroids and NSAIDs and there are TONS of

doctors out there who are confused enough to recommend use of these drugs.

HEALTH,

From: yelunatic <yelunatic@...>

Subject: rheumatic Confused and scared...please help.

rheumatic

Date: Thursday, December 9, 2010, 5:31 AM

 

I saw Dr. W in NJ the other day and he wants to put me on 200mg of

plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried about

this and don't want to wait. I am starting to show signs of Dermatomyocitis that

were not there 2 weeks ago. I thought the AP protocol used IV antibiotics first?

I spoke with Dr. S in Iowa who confirmed that he starts with IV clindomycin and

then goes to Minocin 100mg 2x a day. I then spoke with Dr. T in Boston who said

" stay away from clindomycin, it's a dinosaur. " I am so confused and I feel like

I am getting worse every day and time is a real issue. I am wondering why DR. W

doesnt do the IV, or if he is a full AP dr, or just does it on the side. I am

not even sure if the plaquenil is a good idea. I am thinking that the IV will

work better and faster? I am panicking and thinking of flying out asap to see

Dr. Franco.

On top of this my wife is due to give birth any day and I can't leave her. I

don't know where I would find a Dr here that will do the full IV protocol. I

have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I am so

confused and worried right now. Do I need the IV to start or will my chances of

getting better be reduced if I don't have it? Please help me with all of this

confusion.

[Guest guest]

I started with IV clindamycon, but it is by no means necessary. It still

took a very long time to see improvement, and years of herxing. I stopped AP

due to bad advice, and when I started again, it was like starting over. I

STILL MADE A FULL RECOVERY, despite not doing IVs again. Plaquenil is a good

drug and has helped a lot of people, from what I hear. Dr. W has a lot of

experience. It's possible the Plaquenil will help with the herxing and make

the recovery process more tolerable for you. Good luck to you!

On Thu, Dec 9, 2010 at 11:12 AM, Merchant <anzaltopo@...> wrote:

>

>

> Hello, yelunatic:

>

> It seems You are a young man, so my question is about Your diagnosis: Do

> You have RA or something else?

>

> In any case, a multidisciplinary, multiple-treatment approach is almost

> certainly best and I recommend starting at the Mercola site with his advice

> in addition to what physicians are doing; we need to take an active role in

> our disease management.

>

> I would not be scared of anything but steroids and NSAIDs and there are

> TONS of doctors out there who are confused enough to recommend use of these

> drugs.

>

> HEALTH,

>

>

>

>

>

> From: yelunatic <yelunatic@... <yelunatic%40>>

> Subject: rheumatic Confused and scared...please help.

> rheumatic <rheumatic%40>

> Date: Thursday, December 9, 2010, 5:31 AM

>

>

>

>

> I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

> about this and don't want to wait. I am starting to show signs of

> Dermatomyocitis that were not there 2 weeks ago. I thought the AP protocol

> used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed that he

> starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I then

> spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

> dinosaur. " I am so confused and I feel like I am getting worse every day and

> time is a real issue. I am wondering why DR. W doesnt do the IV, or if he is

> a full AP dr, or just does it on the side. I am not even sure if the

> plaquenil is a good idea. I am thinking that the IV will work better and

> faster? I am panicking and thinking of flying out asap to see Dr. Franco.

>

> On top of this my wife is due to give birth any day and I can't leave her.

> I don't know where I would find a Dr here that will do the full IV protocol.

> I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I am

> so confused and worried right now. Do I need the IV to start or will my

> chances of getting better be reduced if I don't have it? Please help me with

> all of this confusion.

>

>

[Guest guest]

Dr W told me when I was first ill...and he started me on oral clindy...that

he does not think the the IV's make much difference from the oral

clindy...and he also warned me about C. Dif....I took a good probiotic away

from the clindy and was fine.

Debbie

rheumatic Confused and scared...please help.

> > rheumatic <rheumatic%40>

> > Date: Thursday, December 9, 2010, 5:31 AM

> >

> >

> >

> >

> > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

> > about this and don't want to wait. I am starting to show signs of

> > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

protocol

> > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed that

he

> > starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I

then

> > spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

> > dinosaur. " I am so confused and I feel like I am getting worse every day

and

> > time is a real issue. I am wondering why DR. W doesnt do the IV, or if

he is

> > a full AP dr, or just does it on the side. I am not even sure if the

> > plaquenil is a good idea. I am thinking that the IV will work better and

> > faster? I am panicking and thinking of flying out asap to see Dr.

Franco.

> >

> > On top of this my wife is due to give birth any day and I can't leave

her.

> > I don't know where I would find a Dr here that will do the full IV

protocol.

> > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I

am

> > so confused and worried right now. Do I need the IV to start or will my

> > chances of getting better be reduced if I don't have it? Please help me

with

> > all of this confusion.

> >

> >

[Guest guest]

I had 5 days of clindamycin IV's and then a few months of injections after that.

rheumatic Confused and scared...please help.

> > rheumatic <rheumatic%40>

> > Date: Thursday, December 9, 2010, 5:31 AM

> >

> >

> >

> >

> > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

> > about this and don't want to wait. I am starting to show signs of

> > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

protocol

> > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed that

he

> > starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I

then

> > spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

> > dinosaur. " I am so confused and I feel like I am getting worse every day

and

> > time is a real issue. I am wondering why DR. W doesnt do the IV, or if

he is

> > a full AP dr, or just does it on the side. I am not even sure if the

> > plaquenil is a good idea. I am thinking that the IV will work better and

> > faster? I am panicking and thinking of flying out asap to see Dr.

Franco.

> >

> > On top of this my wife is due to give birth any day and I can't leave

her.

> > I don't know where I would find a Dr here that will do the full IV

protocol.

> > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I

am

> > so confused and worried right now. Do I need the IV to start or will my

> > chances of getting better be reduced if I don't have it? Please help me

with

> > all of this confusion.

> >

> >

[Guest guest]

Thanks for the replies, everyone. I started the minocin yesterday and so far

nothing has happened. I am taking 50mg a day right now. Did most of you start

on something higher?

My symptoms I guess are still mild, I have a dry mouth and nose (which has

subsided a bit) occassional nausea, GERD, some skin changes on my knuckles. Bad

circulation/Reynauds, fatigue (which has been helped by the LDN), some muscle

soreness and an incredible amount of anxiety.

All of this started manifesting itself in early September. Before that I was for

the most part, healthy, except for a mildly enlarged spleen and lymphnodes for

the last 10 years that no one knew what the cause was. I also have a little bit

of protein in my urine.

Some doctors disagree on my diagnosis. Dr. Trentham in Boston thinks I have an

early form of CREST scleroderma. Dr Whitman and another rheumatologist think I

have undifferentiated connective tissue disease. I am really depressed and

worried. I am still wondering if I should do the IV's. I hear some start on

Rocephin instead of clindimycin?

-Carl

> > >

> > > From: yelunatic <yelunatic@... <yelunatic%40>>

> > > Subject: rheumatic Confused and scared...please help.

> > > rheumatic <rheumatic%40>

> > > Date: Thursday, December 9, 2010, 5:31 AM

> > >

> > >

> > >

> > >

> > > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> > > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

> > > about this and don't want to wait. I am starting to show signs of

> > > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

> protocol

> > > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed that

> he

> > > starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I

> then

> > > spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

> > > dinosaur. " I am so confused and I feel like I am getting worse every day

> and

> > > time is a real issue. I am wondering why DR. W doesnt do the IV, or if

> he is

> > > a full AP dr, or just does it on the side. I am not even sure if the

> > > plaquenil is a good idea. I am thinking that the IV will work better and

> > > faster? I am panicking and thinking of flying out asap to see Dr.

> Franco.

> > >

> > > On top of this my wife is due to give birth any day and I can't leave

> her.

> > > I don't know where I would find a Dr here that will do the full IV

> protocol.

> > > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I

> am

> > > so confused and worried right now. Do I need the IV to start or will my

> > > chances of getting better be reduced if I don't have it? Please help me

> with

> > > all of this confusion.

> > >

> > >

[Guest guest]

Carl,

Reading your email reminded me of how Dr. Brown use tell his patients how

important a positive attitude was in the healing journey. He found that

people born in May had the most positive attitude that resulted in faster

response to the therapy. You may not have been born in May, but you still

have power over what you allow your mind to dwell on. Norman Cousins,

author of " Anatomy of an Illness " proved how your your mind " can cure your

body " . Using laughter, courage and tenacity he overcame his crippling

disease. Positive emotions are powerful weapons in any war against

disease.

I would strongly recommend you educate yourself concerning the effectiveness

of this therapy. Read the Frequently Asked Questions article at

http://www.rheumatic.org/faq. - also the book " The New Arthritis

Breakthrough " by Henry Scammell. And don't forget all the medical histories

on that site as well as those on www.roadback.org. They are a tremendous

encouragement to people with these diseases.

The road back to health is not just about taking medication. You need to

build up your immune system through a HEALTHY diet and appropriate

supplements and detox your body. Make sure you drink at least 2 quarts of

pure water a day. Water carries the nutrients to your cells and moves the

toxins out of your body. Make sure you do not allow yourself to become

constipated. Aim for two good bowel movements a day. If constipation is a

problem, add a heaping teaspoon of pysillium to a full glass of water once

or twice daily. Also excellent and sometimes necessary is a product like

Intestinal I from www.herbdoc.com taken daily until regularity is achieved.

And don't forget the probiotic to replace the good bacteria being killed off

by the antibiotic.

You stated you started Minocin yesterday and so far nothing has happened.

That's no surprise to people in this group. When I started the therapy, for

over a year I got progressively worse. It's called a Jarisch Herxheimer

reaction. It was 19 long months before I saw any improvement at all. Most

people see improvement quicker than that but then there are a few for which

it takes several years. Don't give up! This therapy is not a quick fix but

more often than not a rather long road - often fraught with many twists and

turns. No two patients are alike and neither is their response to the

therapy. That's why this support group was created. - to offer information,

support and encouragement as you travel on the road back to health.

We are here for people like you.

As for the dosage you are on, it's good to start at the 50 mg. level to try

and avoid a Jarisch Herxheimer, but then you need to eventually raise it as

recommended in the FAQ. Use the FAQ as your guide. Refer to it often. You

should find answers to most of your questions in it.

I sincerely hope this email puts your mind at ease, for to allow yourself to

be so anxious only exacerbates your problems. Maybe others on this list of

over 2,000 people will share their experiences with you.

Ethel

rheumatic Confused and scared...please help.

>> > > rheumatic <rheumatic%40>

>> > > Date: Thursday, December 9, 2010, 5:31 AM

>> > >

>> > >

>> > >

>> > >

>> > > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

>> > > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am

>> worried

>> > > about this and don't want to wait. I am starting to show signs of

>> > > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

>> protocol

>> > > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed

>> that

>> he

>> > > starts with IV clindomycin and then goes to Minocin 100mg 2x a day.

>> I

>> then

>> > > spoke with Dr. T in Boston who said " stay away from clindomycin,

>> it's a

>> > > dinosaur. " I am so confused and I feel like I am getting worse

>> every day

>> and

>> > > time is a real issue. I am wondering why DR. W doesnt do the IV, or

>> if

>> he is

>> > > a full AP dr, or just does it on the side. I am not even sure if

>> the

>> > > plaquenil is a good idea. I am thinking that the IV will work

>> better and

>> > > faster? I am panicking and thinking of flying out asap to see Dr.

>> Franco.

>> > >

>> > > On top of this my wife is due to give birth any day and I can't

>> leave

>> her.

>> > > I don't know where I would find a Dr here that will do the full IV

>> protocol.

>> > > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the

>> iv? I

>> am

>> > > so confused and worried right now. Do I need the IV to start or

>> will my

>> > > chances of getting better be reduced if I don't have it? Please

>> help me

>> with

>> > > all of this confusion.

>> > >

>> > >

[Guest guest]

I started on much higher dosage.  I had all your symptoms, and the doc only

diagnosed me w/chronic fatigue, even though my ANA  blood test show Wegerners

(which my mother died from in 2006).

You posted " have a dry mouth and nose (which has subsided a bit) " that, to me,

sounds like the minocin is working.  Make sure you take some garlic, vit C, and

if you have a Vit Shoppe get Oil of Oregano p73, put5 drops in capsule (can be

purchased @ Vit Shoppe) along w/5 drops of Graped Seed Extract to

kill candida.  

If your symptoms are mild you should get better quickly, unlike me, who's

disease had been progressing since the early 1980's..

Good luck and do not give up.

 Josie (Dallas TX)

________________________________

From: yelunatic <yelunatic@...>

rheumatic

Sent: Sat, December 11, 2010 7:11:18 AM

Subject: rheumatic Re: Confused and scared...please help.

Thanks for the replies, everyone. I started the minocin yesterday and so far

nothing has happened.  I am taking 50mg a day right now. Did most of you start

on something higher?

My symptoms I guess are still mild, I have a dry mouth and nose (which has

subsided a bit) occassional nausea, GERD, some skin changes on my knuckles. Bad

circulation/Reynauds, fatigue (which has been helped by the LDN), some muscle

soreness and an incredible amount of anxiety.

All of this started manifesting itself in early September. Before that I was for

the most part, healthy, except for a mildly enlarged spleen and lymphnodes for

the last 10 years that no one knew what the cause was. I also have a little bit

of protein in my urine.

Some doctors disagree on my diagnosis. Dr. Trentham in Boston thinks I have an

early form of CREST scleroderma. Dr Whitman and another rheumatologist think I

have undifferentiated connective tissue disease. I am really depressed and

worried. I am still wondering if I should do the IV's. I hear some start on

Rocephin instead of clindimycin?

-Carl

>  > >

>  > > From: yelunatic <yelunatic@... <yelunatic%40>>

>  > > Subject: rheumatic Confused and scared...please help.

>  > > rheumatic <rheumatic%40>

>  > > Date: Thursday, December 9, 2010, 5:31 AM

>  > >

>  > >

>  > >

>  > >

>  > > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

>  > > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

>  > > about this and don't want to wait. I am starting to show signs of

>  > > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

>  protocol

>  > > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed that

>  he

>  > > starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I

>  then

>  > > spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

>  > > dinosaur. " I am so confused and I feel like I am getting worse every day

>  and

>  > > time is a real issue. I am wondering why DR. W doesnt do the IV, or if

>  he is

>  > > a full AP dr, or just does it on the side. I am not even sure if the

>  > > plaquenil is a good idea. I am thinking that the IV will work better and

>  > > faster? I am panicking and thinking of flying out asap to see Dr.

>  Franco.

>  > >

>  > > On top of this my wife is due to give birth any day and I can't leave

>  her.

>  > > I don't know where I would find a Dr here that will do the full IV

>  protocol.

>  > > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv? I

>  am

>  > > so confused and worried right now. Do I need the IV to start or will my

>  > > chances of getting better be reduced if I don't have it? Please help me

>  with

>  > > all of this confusion.

>  > >

>  > >

[Guest guest]

Thanks for the replies. My dry mouth and fatigue have subsided a bit since

taking LDN about a month ago. However, the skin on my knuckles is still

changing. Is anyone else here on LDN? I am taking it with Plaquenil and the

minocycline.

I did read through all of the case histories on the roadback site that dealt

with Dermatomyositis, and it seems that some of them are still not in remission,

but are showing some improvement after a few years. Does anyone ever achieve

full remission with this disease or with CREST?

Also, I was tested for mycoplasma two months back and it was negative. Does this

mean that AP won't work for me? When should I experience herxing?

> >  > >

> >  > > From: yelunatic <yelunatic@ <yelunatic%40>>

> >  > > Subject: rheumatic Confused and scared...please help.

> >  > > rheumatic <rheumatic%40>

> >  > > Date: Thursday, December 9, 2010, 5:31 AM

> >  > >

> >  > >

> >  > >

> >  > >

> >  > > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> >  > > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am worried

> >  > > about this and don't want to wait. I am starting to show signs of

> >  > > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

> >  protocol

> >  > > used IV antibiotics first? I spoke with Dr. S in Iowa who confirmed

that

> >  he

> >  > > starts with IV clindomycin and then goes to Minocin 100mg 2x a day. I

> >  then

> >  > > spoke with Dr. T in Boston who said " stay away from clindomycin, it's a

> >  > > dinosaur. " I am so confused and I feel like I am getting worse every

day

> >  and

> >  > > time is a real issue. I am wondering why DR. W doesnt do the IV, or if

> >  he is

> >  > > a full AP dr, or just does it on the side. I am not even sure if the

> >  > > plaquenil is a good idea. I am thinking that the IV will work better

and

> >  > > faster? I am panicking and thinking of flying out asap to see Dr.

> >  Franco.

> >  > >

> >  > > On top of this my wife is due to give birth any day and I can't leave

> >  her.

> >  > > I don't know where I would find a Dr here that will do the full IV

> >  protocol.

> >  > > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the iv?

I

> >  am

> >  > > so confused and worried right now. Do I need the IV to start or will my

> >  > > chances of getting better be reduced if I don't have it? Please help me

> >  with

> >  > > all of this confusion.

> >  > >

> >  > >

[Guest guest]

I have achieved full remission from very severe dermatomyositis (CK of

16,800) with connective tissue involvement. I used antibiotics and

antifungals- nothing else. My story is not on the website yet.

Minocycline is a powerful anti inflammatory, is neuroprotective, and affects

the activity of T cells, so it has many mechanisms of action in these

diseases besides just against mycoplasma. I had many infections other than

mycoplasma, and many of these illnesses are polymicrobial- it took many

infectious insults before our bodies completely broke down.

I found in my case that the exact infections weren't important- the

minocycline brought me so far. Eventually I learned of Lyme and had

enormous benefit adding in Flagyl, another antibiotic.

You may or may not herx. If you are going to, you may start to feel it

within the next few days and weeks. Good luck! Hopefully you are on the

road...

On Tue, Dec 14, 2010 at 12:42 AM, yelunatic <yelunatic@...> wrote:

>

>

> Thanks for the replies. My dry mouth and fatigue have subsided a bit since

> taking LDN about a month ago. However, the skin on my knuckles is still

> changing. Is anyone else here on LDN? I am taking it with Plaquenil and the

> minocycline.

>

> I did read through all of the case histories on the roadback site that

> dealt with Dermatomyositis, and it seems that some of them are still not in

> remission, but are showing some improvement after a few years. Does anyone

> ever achieve full remission with this disease or with CREST?

>

> Also, I was tested for mycoplasma two months back and it was negative. Does

> this mean that AP won't work for me? When should I experience herxing?

>

>

>

> > > > >

> > > > > From: yelunatic <yelunatic@ <yelunatic%40>>

> > > > > Subject: rheumatic Confused and scared...please help.

> > > > > rheumatic

<rheumatic%40><rheumatic%

> 40>

> > > > > Date: Thursday, December 9, 2010, 5:31 AM

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I saw Dr. W in NJ the other day and he wants to put me on 200mg of

> > > > > plaquenil and start Minocycline at 50 mg a day in 2 weeks. I am

> worried

> > > > > about this and don't want to wait. I am starting to show signs of

> > > > > Dermatomyocitis that were not there 2 weeks ago. I thought the AP

> > > protocol

> > > > > used IV antibiotics first? I spoke with Dr. S in Iowa who

> confirmed that

> > > he

> > > > > starts with IV clindomycin and then goes to Minocin 100mg 2x a

> day. I

> > > then

> > > > > spoke with Dr. T in Boston who said " stay away from clindomycin,

> it's a

> > > > > dinosaur. " I am so confused and I feel like I am getting worse

> every day

> > > and

> > > > > time is a real issue. I am wondering why DR. W doesnt do the IV,

> or if

> > > he is

> > > > > a full AP dr, or just does it on the side. I am not even sure if

> the

> > > > > plaquenil is a good idea. I am thinking that the IV will work

> better and

> > > > > faster? I am panicking and thinking of flying out asap to see Dr.

> > > Franco.

> > > > >

> > > > > On top of this my wife is due to give birth any day and I can't

> leave

> > > her.

> > > > > I don't know where I would find a Dr here that will do the full IV

> > > protocol.

> > > > > I have seen Dr. C (aLLMD) in CT. Maybe I shouwld ask him to do the

> iv? I

> > > am

> > > > > so confused and worried right now. Do I need the IV to start or

> will my

> > > > > chances of getting better be reduced if I don't have it? Please

> help me

> > > with

> > > > > all of this confusion.

> > > > >

> > > > >

[Guest guest]

Ethel,

What a beautiful, insightful, and empowering response. It gives us all hope.

Thank you. Amy

>

> Carl,

>

> Reading your email reminded me of how Dr. Brown use tell his patients how

> important a positive attitude was in the healing journey. He found that

> people born in May had the most positive attitude that resulted in faster

> response to the therapy. You may not have been born in May, but you still

> have power over what you allow your mind to dwell on. Norman Cousins,

> author of " Anatomy of an Illness " proved how your your mind " can cure your

> body " . Using laughter, courage and tenacity he overcame his crippling

> disease. Positive emotions are powerful weapons in any war against

> disease.

>

> I would strongly recommend you educate yourself concerning the effectiveness

> of this therapy. Read the Frequently Asked Questions article at

> http://www.rheumatic.org/faq. - also the book " The New Arthritis

> Breakthrough " by Henry Scammell. And don't forget all the medical histories

> on that site as well as those on www.roadback.org. They are a tremendous

> encouragement to people with these diseases.

>

> The road back to health is not just about taking medication. You need to

> build up your immune system through a HEALTHY diet and appropriate

> supplements and detox your body. Make sure you drink at least 2 quarts of

> pure water a day. Water carries the nutrients to your cells and moves the

> toxins out of your body. Make sure you do not allow yourself to become

> constipated. Aim for two good bowel movements a day. If constipation is a

> problem, add a heaping teaspoon of pysillium to a full glass of water once

> or twice daily. Also excellent and sometimes necessary is a product like

> Intestinal I from www.herbdoc.com taken daily until regularity is achieved.

> And don't forget the probiotic to replace the good bacteria being killed off

> by the antibiotic.

>

> You stated you started Minocin yesterday and so far nothing has happened.

> That's no surprise to people in this group. When I started the therapy, for

> over a year I got progressively worse. It's called a Jarisch Herxheimer

> reaction. It was 19 long months before I saw any improvement at all. Most

> people see improvement quicker than that but then there are a few for which

> it takes several years. Don't give up! This therapy is not a quick fix but

> more often than not a rather long road - often fraught with many twists and

> turns. No two patients are alike and neither is their response to the

> therapy. That's why this support group was created. - to offer information,

> support and encouragement as you travel on the road back to health.

> We are here for people like you.

>

> As for the dosage you are on, it's good to start at the 50 mg. level to try

> and avoid a Jarisch Herxheimer, but then you need to eventually raise it as

> recommended in the FAQ. Use the FAQ as your guide. Refer to it often. You

> should find answers to most of your questions in it.

>

> I sincerely hope this email puts your mind at ease, for to allow yourself to

> be so anxious only exacerbates your problems. Maybe others on this list of

> over 2,000 people will share their experiences with you.

>

> Ethel

>

>

[Guest guest]

Great information you sent, Ethel. Thanks for sharing it. mickie

> >

> > Carl,

> >

> > Reading your email reminded me of how Dr. Brown use tell his patients how

> > important a positive attitude was in the healing journey. He found that

> > people born in May had the most positive attitude that resulted in faster

> > response to the therapy. You may not have been born in May, but you still

> > have power over what you allow your mind to dwell on. Norman Cousins,

> > author of " Anatomy of an Illness " proved how your your mind " can cure your

> > body " . Using laughter, courage and tenacity he overcame his crippling

> > disease. Positive emotions are powerful weapons in any war against

> > disease.

> >

> > I would strongly recommend you educate yourself concerning the effectiveness

> > of this therapy. Read the Frequently Asked Questions article at

> > http://www.rheumatic.org/faq. - also the book " The New Arthritis

> > Breakthrough " by Henry Scammell. And don't forget all the medical histories

> > on that site as well as those on www.roadback.org. They are a tremendous

> > encouragement to people with these diseases.

> >

> > The road back to health is not just about taking medication. You need to

> > build up your immune system through a HEALTHY diet and appropriate

> > supplements and detox your body. Make sure you drink at least 2 quarts of

> > pure water a day. Water carries the nutrients to your cells and moves the

> > toxins out of your body. Make sure you do not allow yourself to become

> > constipated. Aim for two good bowel movements a day. If constipation is a

> > problem, add a heaping teaspoon of pysillium to a full glass of water once

> > or twice daily. Also excellent and sometimes necessary is a product like

> > Intestinal I from www.herbdoc.com taken daily until regularity is achieved.

> > And don't forget the probiotic to replace the good bacteria being killed off

> > by the antibiotic.

> >

> > You stated you started Minocin yesterday and so far nothing has happened.

> > That's no surprise to people in this group. When I started the therapy, for

> > over a year I got progressively worse. It's called a Jarisch Herxheimer

> > reaction. It was 19 long months before I saw any improvement at all. Most

> > people see improvement quicker than that but then there are a few for which

> > it takes several years. Don't give up! This therapy is not a quick fix but

> > more often than not a rather long road - often fraught with many twists and

> > turns. No two patients are alike and neither is their response to the

> > therapy. That's why this support group was created. - to offer information,

> > support and encouragement as you travel on the road back to health.

> > We are here for people like you.

> >

> > As for the dosage you are on, it's good to start at the 50 mg. level to try

> > and avoid a Jarisch Herxheimer, but then you need to eventually raise it as

> > recommended in the FAQ. Use the FAQ as your guide. Refer to it often. You

> > should find answers to most of your questions in it.

> >

> > I sincerely hope this email puts your mind at ease, for to allow yourself to

> > be so anxious only exacerbates your problems. Maybe others on this list of

> > over 2,000 people will share their experiences with you.

> >

> > Ethel

> >

> >

>

[Guest guest]

Re: herxing...

I did not get any herx reaction when I started on 50mg mino. It wasn't until I

moved up to 100mg everyday that I started feeling bad. So I backed off to MWF. I

still keep trying to take it more often, and always feel worse. So I will stick

to MWF for a while longer and try to up my dose at some point in the future.

While the herx is not pleasant to deal with, to me it tells me I am on the right

track with the mino.

Amy

[Guest guest]

Yes you are Amy!  Herxing is not pleasant, but try to think of the L-form

bacteria that is being attacked by your immune system and then know why they are

emitting the toxin that is making you sick.  The bacteria is fighting to live

and so are you.  You are winning the battle.  It is not pleasant, to say the

least, but you will win!  Just hang in there, sweetheart!  We know how you

feel!  Been there, done that and came out of it alive and well and so will

you.  Try to sleep off the bad days as much as you can.  It helps the body

recoup! Happier Holidays are ahead for you.  Hang in there!~~The best to you .

Dolores

From: Amy <muttville@...>

Subject: rheumatic Re: Confused and scared...please help.

rheumatic

Date: Tuesday, December 14, 2010, 4:23 PM

 

Re: herxing...

I did not get any herx reaction when I started on 50mg mino. It wasn't until I

moved up to 100mg everyday that I started feeling bad. So I backed off to MWF. I

still keep trying to take it more often, and always feel worse. So I will stick

to MWF for a while longer and try to up my dose at some point in the future.

While the herx is not pleasant to deal with, to me it tells me I am on the right

track with the mino.

Amy