RE: Re: mino/dizzy update

[Guest guest]

Dear Kathy,

 

I just want to say that when I was first diagnosed, my husband and I flew to

Boston to see Dr. Trentham who was highly recommended an an A/P doctor.  He

immediately put me on 100mg twice a day and I have been on that for the better

part of 4 years.  No one ever told me that this is an excessive dose.  Of

course, he wrote on every script he gave me to be filled with brand name only. 

Yes, I was dizzy at times.  Yes, I threw up many times and endured years of

diarrhea. Yes, I had pains, severe muscle cramps, Raynauds and many various

other symptoms that would flare and wane. My brain wasn't working right at

times,but I stuck with the medication knowing it was either that or die. I 

was given pallative treatment for the symptoms I couldn't tolerate and ignored

the minor annoyances.  Every organ in my body was checked thoroughly every few

months and constant blood work, MRI's CT scans and xrays kept the various

specialists I was seeing in touch

with what was going on in my body and mind.  Days when I couldn't get out of

bed, I would sleep or watch TV, but never once was I taken off Minocin.  I

learned about the herxes which I thought were mild, so I ignored them.  I had

been warned that I would feel much worse prior to feeling better and I did.  It

took a long time.  This went on for months and years, but eventually, my

symptoms got milder and easier to handle. Times when I was feeling great

would suddenly be interrupted by a new flare and I would be back at the bottom

of the barrel again but I hung in there because you all encouraged me.  I am

well today because of Minocin and the support I recieved from most of you who

are going through the same thing..  I later learned that some people do not

tolerate some antibiotics.  I learned that Doxycyline can be substituted and

other antibiotics can be added for short periods of time.  Bactrim,

Clindamycin, Azithromycin are some that I

used in addition to the Minocin at various times. If you really can't handle

the Minocin, first check to see if you have been given a generic which could

have fillers in it.  The brand name is made up of tiny pellets and not

powders.  Then if you have been on brand only, ask the doc if you can switch to

doxy for a spell.  To that you can add LDN if necessary, but never give up

your antibiotics. You can take them daily or pulse them which is recommended

but never give them up entirely.  It is what was is weakening the offending

infectious agent that is making you sick.  You never want to allow the

bacteria to regroup and attack you ever again.  That is why this therapy is

called, " The Antibiotic Therapy " .  Sorry to be so blunt but when I read

that you have been off Minocin for 4 days and feeling better, alarm bells went

off.  At this point in your therapy, you don't want to be feeling better.  You

want to know that you are experiencing

die off from the bacteria and as they die they emit a toxin that makes you

sick.  You can take pallative measures, but never ever let go of your

antibiotic.Experience has taught me that. Hang in there.  There is a light at

the end of the tunnel.  What doesn't kill you, will make you stronger.  Best

to you, Dolores

From: pcalvert.rm <pcalvert@...>

Subject: rheumatic Re: mino/dizzy update

rheumatic

Date: Thursday, February 4, 2010, 7:37 PM

 

Kathy,

You've been taking 100 mg of minocycline for how long? That's a moderately high

dose. A dose of 100 mg minocycline QOD (e.g., M-W-F) would be more in line with

the antibiotic protocol.

Have you been taking the exact same type of mino all along? The thought just

occurred to me that perhaps the pharmacy has changed suppliers, and they are now

supplying you with mino that is different than what you were taking previously.

I hope your doctor isn't thinking of having you discontinue minocycline in order

to try LDN. Since there are several other antibiotics that you could take

instead of minocycline, it wouldn't make much sense to do that without trying

them first. LDN can always be added later, if desired.

Phil

>

> Well, My last dose of mino was monday nite. I skipped tues and weds. so far i

feel MUCH better. But I will take it tonite and see how i feel friday. then I

will start everyother day or something like that. I am interested in seeing what

I can find out about the LDN, as the Dr said he could add that if i cant handle

the mino. Kathy

>

>

[Guest guest]

Dear ,   It could have been that the 100mg/day was not enough to weaken

the micoplasma overload you may have had at the time.  Then when you switched

to the 200mg load, it started to build up.  You probably felt so good because

Minocin has antiinflammatory properties and we feel better when we are not

inflammed.  Then probably the accumulated dosages in your body began attacking

the micoplasma and they started fighting back.  That is when they begin

emitting the toxins and you know the minocin is working.  That is the difficult

part to endure, but if you can handle that phase, which may be a very long one,

you will eventually get to the point in your life where the overload of

micoplasma gets reduced. Then your immune system is able to handle them by

being strong enough to kill them off and you eventually go into remission and

start feeling like a normal human being once again.  I have read Dr.

MacPherson Brown's books several

times and those written by Henry Scammell and that is the picture I have in my

mind on how the antibiotic protocol works.  We do feel worse while we are

getting better because we are attacking the source of the infection and the

source is fighting back. Mino is not given to make us feel better, it is given

to weaken the micoplasmas.  It is important to know that it is possible for a

person to have multiple infections going on at the same time, That is why blood

work and testing for celiac & metals, etc at the beginning is so important.  In

fact, Dr. Franco from California insists on it.  Once you know what you are

fighting, it is easier to know what antibiotics, antifungals or antivirals to

use, and in what combinations, and what diet is best and what toxins you have

to get rid of. It can get complicated.  But quitting or going the route of

suppressing the immune response is not the way to go.  Most Rheumatologists

want to suppress the immune

respone.  That is easy, but does nothing to clean out the system.  In fact,

in the end, one is much worse off.  Getting at the root of the problem is the

only way. Now I am speaking from the viewpoint  of a scleroderma patient

who was also diagnosed with R/A and MCTD.  After 5 years of fighting back, my

blood work shows that I am in remission.  My body shows the scars and damages,

but I am still here.  I hope this helps.  Dolores & Mike  

From: Sauve <moniquesauve@...>

Subject: rheumatic Re: mino/dizzy update

rheumatic

Date: Friday, February 5, 2010, 2:55 PM

 

i started mino at 100 mg a day in 2000. it didn't seem to help much so

after a year i upped to 200 mg a day. within 3 mos i was in complete

remission. felt great. no herxing or dizziness at all. then in late 2002

i developed horrible vertigo nausea and fatigue so crippling i could not

work drive. so i had to go off the mino as each time i tried to take it

those symptoms came back. i think i developed bad candida and that is

why the dizziness came.or maybe i developed an allergy to mino i don't

know. i also had the same symptoms when i tried ldn.

monique

[Guest guest]

Well said Dolores!! thanks!

Judy (not an easy thing to explain)

In a message dated 2/5/2010 10:27:54 P.M. Eastern Standard Time,

martysfolks2004@... writes:

Dear , It could have been that the 100mg/day was not enough to

weaken the micoplasma overload you may have had at the time. Then when you

switched to the 200mg load, it started to build up. You probably felt so

good because Minocin has antiinflammatory properties and we feel better when

we are not inflammed. Then probably the accumulated dosages in your body

began attacking the micoplasma and they started fighting back. That is when

they begin emitting the toxins and you know the minocin is working. That

is the difficult part to endure, but if you can handle that phase, which

may be a very long one, you will eventually get to the point in your life

where the overload of micoplasma gets reduced. Then your immune system is able

to handle them by being strong enough to kill them off and you eventually

go into remission and start feeling like a normal human being once again.

I have read Dr. MacPherson Brown's books several

times and those written by Henry Scammell and that is the picture I have

in my mind on how the antibiotic protocol works. We do feel worse while we

are getting better because we are attacking the source of the infection and

the source is fighting back. Mino is not given to make us feel better, it

is given to weaken the micoplasmas. It is important to know that it is

possible for a person to have multiple infections going on at the same time,

That is why blood work and testing for celiac & metals, etc at the beginning

is so important. In fact, Dr. Franco from California insists on it. Once

you know what you are fighting, it is easier to know what antibiotics,

antifungals or antivirals to use, and in what combinations, and what diet is

best and what toxins you have to get rid of. It can get complicated. But

quitting or going the route of suppressing the immune response is not the way

to go. Most Rheumatologists want to suppress the immune

respone. That is easy, but does nothing to clean out the system. In

fact, in the end, one is much worse off. Getting at the root of the problem is

the only way. Now I am speaking from the viewpoint of a scleroderma

patient who was also diagnosed with R/A and MCTD. After 5 years of fighting

back, my blood work shows that I am in remission. My body shows the scars

and damages, but I am still here. I hope this helps. Dolores & Mike

From: Sauve <_moniquesauve@monique_ (mailto:moniquesauve@...) >

Subject: rheumatic Re: mino/dizzy update

_rheumatic@grourheuma_ (mailto:rheumatic )

Date: Friday, February 5, 2010, 2:55 PM

i started mino at 100 mg a day in 2000. it didn't seem to help much so

after a year i upped to 200 mg a day. within 3 mos i was in complete

remission. felt great. no herxing or dizziness at all. then in late 2002

i developed horrible vertigo nausea and fatigue so crippling i could not

work drive. so i had to go off the mino as each time i tried to take it

those symptoms came back. i think i developed bad candida and that is

why the dizziness came.or maybe i developed an allergy to mino i don't

know. i also had the same symptoms when i tried ldn.

monique

[Non-text portions of this message have been removed]

[Guest guest]

Thank you Judy.  It took me the better part of the first year and a half to

figure out the concept of A/P.  Although I kept reading it, my brain

fog prevented my comprehension of the rationale behind the protocol.  Lynne G.

kept after me and kept reminding me until I got it all straight.  It is

difficult to live in pain, have brain fog, and be fighting with the various

docs who want you to quit the antibiotics and start the toxic meds they offer to

suppress the immune system.  I knew in my core what I was doing, but they

(medical community in general) makes a person think they are some kind of nut

by insisting on antibiotics.  I now know how lucky I was to have the support

from all of the groups and Lynne.  It is what kept me going and defying the

docs.  And now the proof is in the pudding.  My blood work is normal.  I deal

with the damages this storm left, maybe they will heal in time and maybe not,

but I'll be here to talk about

it.  I just hope that my experience helps other newbies who want to give up

when they are so sick.My heart hurts for them as I remember well my predicament.

 Like I said before, there is a light at the end of the tunnel and although the

antibiotics weaken the bacteria, the body is a complicated machine and needs so

much more investigation because of the multiple problems that can arise and

everyone is not alike.  Take care,  I'll be quiet for a while and watch/read

what is going on.  I'll only pop in when I think someone wants to quit.  That

is when my alarm bells go off.  Best to all, Dolores & Mike

From: Sauve <_moniquesauve@ monique_ (mailto:moniquesauve@ shaw.ca) >

Subject: rheumatic Re: mino/dizzy update

_rheumatic@gro urheuma_ (mailto:rheumatic@grou ps.com)

Date: Friday, February 5, 2010, 2:55 PM

i started mino at 100 mg a day in 2000. it didn't seem to help much so

after a year i upped to 200 mg a day. within 3 mos i was in complete

remission. felt great. no herxing or dizziness at all. then in late 2002

i developed horrible vertigo nausea and fatigue so crippling i could not

work drive. so i had to go off the mino as each time i tried to take it

those symptoms came back. i think i developed bad candida and that is

why the dizziness came.or maybe i developed an allergy to mino i don't

know. i also had the same symptoms when i tried ldn.

monique

[Guest guest]

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic <mailto:rheumatic%40>

[mailto:rheumatic <mailto:rheumatic%40> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic <mailto:rheumatic%40>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Hi, I know Dr. Brown started out by giving clindamycin IV for a certain period

of time, then he switched to the tertacycline family in the form taken orally

and he pulsed that medication. When I went on the MP, afterr two years of just

minocin 200mg/day, I too had to switch to a pulsed antibiotic medication in the

first phase. In the second phase, I added different antibiotics also pulsed

and the third phase I added another antibiotic and pulsed that too.  None of

my doctors and I have gone thru quite a few ever supported my decision to be on

any antibiotic protocol.  They all just followed along with what I had been

taking and didn't push me to take the toxic meds.  The ones who insisted on me

taking the toxic meds, I never went back to.  If I have been doing it wrong for

4 years, this is the first I have heard that 100mg twice each day is acting

like a DMARD. I have seen this word printed before, bit no one ever told me

what it stands

for.  All I know is that my ANA was 1:640 and now it is 0.  My RF was 38 and

now it is 0. Could you explain the difference between a DMARD and the antibiotic

protocol.  Dolores  

From: ehgooding <ehgooding@...>

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic

Date: Saturday, February 13, 2010, 3:42 PM

 

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

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

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Is there literature that supports that  Minocin can become Toxic after the

expiration date?  I have several bottles of it stored.  If it is toxic, how

would we know?  Are there symptoms to look out for?  Dolores

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic

Date: Saturday, February 13, 2010, 5:06 PM

 

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Yes I think if you look it up. I have not looked it up for a long time but I

remember because we gave out tetracyclines but the sh—load (hehe). I can’t

say for certain but I don’t think it includes the macolides….only the

cyclines. BUT I could be wrong.

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Saturday, February 13, 2010 5:28 PM

rheumatic

Subject: RE: rheumatic Re: mino/dizzy update

Is there literature that supports that Minocin can become Toxic after the

expiration date? I have several bottles of it stored. If it is toxic, how

would we know? Are there symptoms to look out for? Dolores

From: Cooky Stonkey <cookee1@... <mailto:cookee1%40comcast.net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic <mailto:rheumatic%40>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Maybe the manufacturer of the drug could tell you or the pharmacist. El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of mike rosner

Sent: Saturday, February 13, 2010 5:28 PM

rheumatic

Subject: RE: rheumatic Re: mino/dizzy update

Is there literature that supports that Minocin can become Toxic after the

expiration date? I have several bottles of it stored. If it is toxic, how

would we know? Are there symptoms to look out for? Dolores

From: Cooky Stonkey <cookee1comcast (DOT) <mailto:cookee1%40comcast.net> net>

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou <mailto:rheumatic%40> ps.com

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Behalf

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@grou ps.com <mailto:rheumatic% 40groups. com> ]

On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Okay, now I am completely confused and will have to google and up these words. 

What is a macolide?   DEMARD ?  Isn't Minocin part of the tetracycline

family?  Why, if kids with zits could swallow the tetracycline pills and not

run into problems, do we have to back off .  As far as it being just for

scleroderma, I was not only diagnosed with scleroderma.  I was told by Dr.

Whitman that I also had MCTD and Rhematoid Arthritis. I thought 100mg was low

dose. I recently dropped back to 100mg MWF.  Then I went to see my doctor.  He

found that I had a UTI and told me to take Bactrim and increase the Minocin. 

He has never had a scleroderma patient.  So, he is just going by what I have

been doing for the past 5 years.  The reason he increased the Mino dosage is

because the end knuckle of my some fingers started to get hard again, like it

was in the beginning. I showed my fingers to him.  He has never had an SD

patient, but he is willing to

learn. Dolores   

From: Cooky Stonkey <cookee1comcast (DOT) net <mailto:cookee1% 40comcast. net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@ grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Well… Delores

Minocin is good for all the diseases caused by mycoplasmas . I was under the

impression when I was first dxed that IV Clindy is preferred in addition to

minocin for Scleraderma but a lot of people here did Ok on just Mino. Doc Brown

used tetracycline because there was no Minocin yet. He also did IV’s of

tetracycline. Then he switched to minocin but tetra is still OK to use. They say

tetra is less strong …I think Mino just works faster and is less likely to

cause problems with teeth (not in adults) and tetra needs to be taken more often

per day. Doc Brown used a very small dose of tetra and still got good results.

According to the protocol we follow here Minocin is taken 100mgms twice a day

MWF. Some people have severe infections and cannot tolerate that much. You can

take anything from 50mgms 2 times a week all the way to 200mgms a day 7 days a

week. Here we do not like the daily dose because of a lot of reasons you can

find in F & Q.

Doctors that want increases or want every day meds do not have a clue about how

antibiotics work for rheumatic diseases. A DEMARD is a Disease Modifying Anii

Rheumatic Drug.. Disease-modifying antirheumatic drugs (DMARDs) is a category of

otherwise unrelated drugs defined by their use in rheumatoid arthritis

<http://en.wikipedia.org/wiki/Rheumatoid_arthritis> to slow down disease

progression.

<http://en.wikipedia.org/wiki/Disease-modifying_antirheumatic_drug#cite_note-0>

[1]

<http://en.wikipedia.org/wiki/Disease-modifying_antirheumatic_drug#cite_note-url\

Disease_modifying_antirheumatic_drugs_.28DMARDs.29-1> [2] The term is often used

in contrast to non-steroidal anti-inflammatory

<http://en.wikipedia.org/wiki/Non-steroidal_anti-inflammatory_drug> drug, which

refers to agents that treat the inflammation

<http://en.wikipedia.org/wiki/Inflammation> but not the underlying cause. They

consider Mino to be a DEMARD because it causes inflamation to decrease and most

alopathic docs do not believe we have an infection so they get by using Mino

saying it is a DEMARD and therefore acceptable.

Dolores, truly, if I were you I would get one of your docs that will work with

you, to order Clindy IV’s. There are instructions on the protocol pages. If

you do get them and have questions…I had them for 7 years and am thinking of

doing them again. I have had rheumatoid for 12 years. I personally do not

believe people with our disaeses will be on antibiotics for life.

Have you read Doc’s Browns books?

Hugs,

cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Saturday, February 13, 2010 6:25 PM

rheumatic

Subject: RE: rheumatic Re: mino/dizzy update

Okay, now I am completely confused and will have to google and up these words.

What is a macolide? DEMARD ? Isn't Minocin part of the tetracycline family?

Why, if kids with zits could swallow the tetracycline pills and not run into

problems, do we have to back off . As far as it being just for scleroderma, I

was not only diagnosed with scleroderma. I was told by Dr. Whitman that I also

had MCTD and Rhematoid Arthritis. I thought 100mg was low dose. I recently

dropped back to 100mg MWF. Then I went to see my doctor. He found that I had a

UTI and told me to take Bactrim and increase the Minocin. He has never had a

scleroderma patient. So, he is just going by what I have been doing for the

past 5 years. The reason he increased the Mino dosage is because the end

knuckle of my some fingers started to get hard again, like it was in the

beginning. I showed my fingers to him. He has never had an SD patient, but he

is willing to

learn. Dolores

From: Cooky Stonkey <cookee1comcast (DOT) net <mailto:cookee1% 40comcast. net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@ grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

DMARD stands for disease modifying anti-rheumatic drug. Drugs such as

Humira, Remicade, Enbrel, Celebrex, etc. are considered DMARDs. I believe

it was the American College of Rheumatology that decided to classify

minocycline as a DMARD.

rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Hi Ethel,  I looked it up also and what I can't understand is that Minocin is

an antibiotic when given at a lower dose and pulsed, but when given at a higher

dose and daily, it becomes a DMARD.  How do they know this?  And at what point

does it change.  For the first two and a half years, I follow with Dr.T. in

Boston. Then I went to Dr. Whitman in N.J when I decided to go on MP.  He

didn't want me to follow the Benicar blockade part, so I stopped going to him,

bought the dark glasses and toned down all the lights.  About 6 months into

that and my ANA started to get lower but the RF was still in the 30's.  Then

about 2 years later, the ANA went normal, but the RF was still slightly up. 

This last draw the RF was normal.  So, I decided to pulse minocin on MWF at

100mg.  The first thing I noticed is that my nose started running.  That

hasn't happened since the first two years of my therapy.Dr. T. never told me

directly that I had

scleroderma.  It was the dermatologist who diagnosed me when he saw the

vitiligo markings on my forehead.  I am the one who told Dr. T. that I had

scleroderma.  He put me on Minocin 100mg, twice daily and I didn't switch to

the other antibiotics till I went on MP. I was well into my 2.5 yrs of illness

at that time.  Since then I have taken Minocin off and on.  For a while I took

doxy, clindy and zith.  Then I substitued Bactrim for clindy for a while. At

that time there was change at the MP.site.  The people who were following the

progress all left and new people showed up...That made me nervous, so I didn't

report in any more and just used my copy of the third phase to continue.  I

stopped the 3rd phase a few months ago. Now my new doc doesn't have a clue, so

I'm just doing what I think is right.  I think the faq sheet said to take Mino

MWF, but didn't specify if the dose should be 100mg or 200mg .  This is the

part that confuses me. When

is the drug a DMARD and when is the same drug an antibiotic.  And should I be

taking it as a DMARD or as an antibiotic. I've heard of this before, but never

really understood it.  It just doesn't make sense to me.  Do any of you who

have reached remission or had your labs come back completely normal, still use

the Minocin MWF and at what dosages.  Is this going to be a life long treatment

or will there be a time when I can be drug and disease free?  I think I will

have to re read Dr. Brown's book again to be sure I'm following his protocol. 

Thank you for your effort and your time.  Dolores & Mike

From: ehgooding <ehgoodingcox (DOT) net>

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com

Date: Saturday, February 13, 2010, 3:42 PM

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

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

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Hi Cooky, I really appreciate all the info I am getting.  I think you solved

the problem I was having trying to figure out when Minocin (antibiotic becomes a

DMARD)  and how it works.  That part I could understand that Rheumies have

to cover themselves first or they risk losing their livelyhood.  When I was

going to the Infectious disease doctor, I told him I was taking oral

clindamycin as part of the MP.  He didn't seem to like that and told me to take

something else.  Well, on the MP sheet, it said I could substitue Bactrim, so I

did for a while.  I moved to an Island off of Puerto Rico because I am very

cold intolerant.  I even wear a sweater in Puerto Rico where it is 80 degrees

most of the time. Last year, my husbands Raynauds became worse and that settled

it, we moved.  Now my new doc who comes to the Island by boat has never even

seen a patient with scleroderma.  I told him about the antibiotic protocol and

gave him the FAQ sheet (in

Spanish).  I know many people have had clindamycin IV's.  And there is a

protocol for that. But I don't know what it is and so I can't explain to the doc

how to do it.  I don't know how comfortable he would be.  We have not

discussed it.  Does IV Clindamycin work differently than oral clindy.  I

suffered from constant diarrhea for two years and I think it was the clindy that

did it.  Well, now I am having normal bm's two to three times a day.  I know

Dr. Franco in California asks people to restrain from starting antibiotics till

he has checked for the offending bacteria. Then he starts the IV clindamycin. 

I am puzzled by you wanting to go back on IV clindamycin.  I thought that was

only given at the onset of the disease, not after you've been on antibiotics. 

Since clindamycin is a macrolide, what does it do that Minocin doesn't?  And

why would someone who appears to be in remission go back on IV meds.  Yes, I

read Dr. Brown's book a

while back and the one he wrote with Henry Scammell. I recently re read

Scammell's book about scleroderma.  I always find something I

missed so, that is what I am going to do tomorrow.  I'll read my copy of the

Road Back again and The new Arthritis Breakthrough. I had planned on doing that

anyway.  Thank you for all the information.  I hope I am not asking too many

questions.  I was never too clear on what I was doing.  I had severe

brain fog thru most of my treatment.  I feel like I am waking up from a

nightmare I have had for almost 5 years.  I am just starting to understand. 

All I knew was what the first batch of Rhuemys I saw told me They said that I

was terminal and there was no cure, but that they could keep me comfortable by

giving me steroids chemo, and  suppressants, I bolted out the door and then

heard about the antibiotic protocol from Lynne G,  She explained it, even tho'

I was in a fog, I chose to do the A.P rather than

take the toxic meds I figured since those docs really had nothing to offer me

and I was gonna die from this disease soon anyway I would be better off with the

antibiotics. I chose right.  It's been 5 years and I am much better than I was

then.  I'm just older, more wrinkled and look like I have been through a war

for 5 years. Thank you for everything.  My best to all of you, Dolores  

From: Cooky Stonkey <cookee1comcast (DOT) net <mailto:cookee1% 40comcast. net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@ grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Hi Dodo;

YEA, I am back among the living and will mail you today.No

problems,just too much work and a crappy computer.I once told you that I

wanted to come back as a flower when I die,well S is at a show in

Toronto and a plant got top award from the American Orchid Society and

since it was never registered they named it after me.I've been bouncing

off the walls since last night when he called.

Now to this DMARD thing,I think you know what it's all about

..Remember when you were reading all the info on MP and Dr. M explained

how heavy doses of antibiotics act like prednisone,well ,pred is a DMARD

and that is why you were using pulsed antibiotics.He says that heavy

doses suppress the immune system.

While I am here I might as well post a couple of articles I have

been meaning to pass on for the last six months.All are about SD and

maybe Ethel would want to move them somewhere so that all SDers can read

them.

As usual I screwed this up,just ignore the first 3 lines below.Can't

remove them.UG

Lynne

http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3 & itool=EntrezSystem2.PEn\

trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?cr\

awler=true

http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2 & itool=EntrezSystem2.PEn\

trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3 & itool=EntrezSystem2.PEn\

trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?cr\

awler=true

http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2 & itool=EntrezSystem2.PEn\

trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://bacteriality.com/2007/09/11/cantwell/

http://www.answers.com/topic/bartonella

http://www.answers.com/topic/bartonella

>

>

> Hi Ethel, I looked it up also and what I can't understand is that

> Minocin is an antibiotic when given at a lower dose and pulsed, but

> when given at a higher dose and daily, it becomes a DMARD. How do

> they know this? And at what point does it change. For the first two

> and a half years, I follow with Dr.T. in Boston. Then I went to Dr.

> Whitman in N.J when I decided to go on MP. He didn't want me to

> follow the Benicar blockade part, so I stopped going to him, bought

> the dark glasses and toned down all the lights. About 6 months into

> that and my ANA started to get lower but the RF was still in the

> 30's. Then about 2 years later, the ANA went normal, but the RF was

> still slightly up. This last draw the RF was normal. So, I decided

> to pulse minocin on MWF at 100mg. The first thing I noticed is that

> my nose started running. That hasn't happened since the first two

> years of my therapy.Dr. T. never told me directly that I had

> scleroderma. It was the dermatologist who diagnosed me when he saw

> the vitiligo markings on my forehead. I am the one who told Dr. T.

> that I had scleroderma. He put me on Minocin 100mg, twice daily and I

> didn't switch to the other antibiotics till I went on MP. I was well

> into my 2.5 yrs of illness at that time. Since then I have taken

> Minocin off and on. For a while I took doxy, clindy and zith. Then I

> substitued Bactrim for clindy for a while. At that time there was

> change at the MP.site. The people who were following the progress all

> left and new people showed up...That made me nervous, so I didn't

> report in any more and just used my copy of the third phase to

> continue. I stopped the 3rd phase a few months ago. Now my new doc

> doesn't have a clue, so I'm just doing what I think is right. I think

> the faq sheet said to take Mino MWF, but didn't specify if the dose

> should be 100mg or 200mg . This is the part that confuses me. When

> is the drug a DMARD and when is the same drug an antibiotic. And

> should I be taking it as a DMARD or as an antibiotic. I've heard of

> this before, but never really understood it. It just doesn't make

> sense to me. Do any of you who have reached remission or had your

> labs come back completely normal, still use the Minocin MWF and at

> what dosages. Is this going to be a life long treatment or will

> there be a time when I can be drug and disease free? I think I will

> have to re read Dr. Brown's book again to be sure I'm following his

> protocol. Thank you for your effort and your time. Dolores & Mike

>

>

>

> From: ehgooding <ehgoodingcox (DOT) net>

> Subject: RE: rheumatic Re: mino/dizzy update

> rheumatic@grou ps.com

> Date: Saturday, February 13, 2010, 3:42 PM

>

> Hi all,

>

> I was on Minocin, 100 mg daily, for almost three years to treat RA &

> Lyme's.

> I never herxed and I improved steadily. After three months I no longer had

> 'sausage' fingers, no more Raynaud's, I had more energy, less pain,

> etc. So

> while I would fill an RX recommending twice as much med as I was going to

> take - it lasted twice as long and I avoided interim price increases

> (smile)

> I only took 100mg a day.

>

> By the way, I had one Dr. tell me to never take Minocin after the

> expiration

> date. I managed to use mine up before that, and I normally don't worry

> about expiration dates, but there was just something in the way he

> said that

> make me take heed. Has anyone come across that advice before and know the

> reason why he might have said it? Regards to all, El

>

> _____

>

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

> Behalf

> Of pcalvert.rm

> Sent: Saturday, February 13, 2010 12:22 PM

> rheumatic@grou ps.com

> Subject: rheumatic Re: mino/dizzy update

>

> Hello Dolores,

>

> A dose of 100 mg twice a day is (apparently) normal for some patients, but

> not all. For example, I have noticed that 100 mg of minocycline twice

> a day

> is the dose normally prescribed for people with scleroderma. However, for

> people with " autoimmune " diseases that have inflammation as a significant

> component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

> easily be too much.

>

> By the way, with daily dosing, minocycline is being used as a DMARD. It is

> *not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

> Sometimes it is referred to it as the Harvard Protocol.

>

> NOTE: I am not a medical professional. I am just passing along what I have

> learned with the hope that it might be helpful to other people.

>

> Phil

>

>

> >

> > Dear Kathy,

> >

> > I just want to say that when I was first diagnosed, my husband and I

> flew

> to Boston to see Dr. T who was highly recommended an an A/P doctor. He

> immediately put me on 100mg twice a day and I have been on that for the

> better part of 4 years. No one ever told me that this is an excessive

> dose.

> >

> >

>

>

[Guest guest]

Well,I was just going for breakfast but had to reply to this

post.Dodo,you just gave me my laugh for the day.

Remember me saying that I was wishing for a bit of my old collagen as

I was bagging and sagging,I am glad to hear I am not the only one.

hehehehehe

>

>

> Hi Cooky, I really appreciate all the info I am getting. I think you

> solved the problem I was having trying to figure out when Minocin

> (antibiotic becomes a DMARD) and how it works. That part I could

> understand that Rheumies have to cover themselves first or they risk

> losing their livelyhood. When I was going to the Infectious disease

> doctor, I told him I was taking oral clindamycin as part of the MP.

> He didn't seem to like that and told me to take something else. Well,

> on the MP sheet, it said I could substitue Bactrim, so I did for a

> while. I moved to an Island off of Puerto Rico because I am very cold

> intolerant. I even wear a sweater in Puerto Rico where it is 80

> degrees most of the time. Last year, my husbands Raynauds became worse

> and that settled it, we moved. Now my new doc who comes to the Island

> by boat has never even seen a patient with scleroderma. I told him

> about the antibiotic protocol and gave him the FAQ sheet (in

> Spanish). I know many people have had clindamycin IV's. And there is

> a protocol for that. But I don't know what it is and so I can't

> explain to the doc how to do it. I don't know how comfortable he

> would be. We have not discussed it. Does IV Clindamycin work

> differently than oral clindy. I suffered from constant diarrhea for

> two years and I think it was the clindy that did it. Well, now I am

> having normal bm's two to three times a day. I know Dr. Franco in

> California asks people to restrain from starting antibiotics till he

> has checked for the offending bacteria. Then he starts the IV

> clindamycin. I am puzzled by you wanting to go back on IV

> clindamycin. I thought that was only given at the onset of the

> disease, not after you've been on antibiotics. Since clindamycin is a

> macrolide, what does it do that Minocin doesn't? And why would

> someone who appears to be in remission go back on IV meds. Yes, I

> read Dr. Brown's book a

> while back and the one he wrote with Henry Scammell. I recently re

> read Scammell's book about scleroderma. I always find something I

> missed so, that is what I am going to do tomorrow. I'll read my copy

> of the Road Back again and The new Arthritis Breakthrough. I had

> planned on doing that anyway. Thank you for all the information. I

> hope I am not asking too many questions. I was never too clear on

> what I was doing. I had severe brain fog thru most of my treatment.

> I feel like I am waking up from a nightmare I have had for almost 5

> years. I am just starting to understand. All I knew was what the

> first batch of Rhuemys I saw told me They said that I was terminal and

> there was no cure, but that they could keep me comfortable by giving

> me steroids chemo, and suppressants, I bolted out the door and then

> heard about the antibiotic protocol from Lynne G, She explained it,

> even tho' I was in a fog, I chose to do the A.P rather than

> take the toxic meds I figured since those docs really had nothing to

> offer me and I was gonna die from this disease soon anyway I would be

> better off with the antibiotics. I chose right. It's been 5 years and

> I am much better than I was then. I'm just older, more wrinkled and

> look like I have been through a war for 5 years. Thank you for

> everything. My best to all of you, Dolores

>

>

>

> From: Cooky Stonkey <cookee1@... <mailto:cookee1%40comcast.net>>

> Subject: RE: rheumatic Re: mino/dizzy update

> rheumatic <mailto:rheumatic%40>

> Date: Saturday, February 13, 2010, 7:07 PM

>

>

>

[Guest guest]

Lynne a DEMARD is not a steroid. DEMARDS came out because of the problems with

steroids and people still needed an inflammatory suppressant. DEMARDS have shown

to have problems all their own tho.

From: rheumatic [mailto:rheumatic ] On Behalf Of

Lynne and Santos

Sent: Sunday, February 14, 2010 9:49 AM

rheumatic

Subject: Re: rheumatic Re: mino/dizzy update

Hi Dodo;

YEA, I am back among the living and will mail you today.No

problems,just too much work and a crappy computer.I once told you that I

wanted to come back as a flower when I die,well S is at a show in

Toronto and a plant got top award from the American Orchid Society and

since it was never registered they named it after me.I've been bouncing

off the walls since last night when he called.

Now to this DMARD thing,I think you know what it's all about

..Remember when you were reading all the info on MP and Dr. M explained

how heavy doses of antibiotics act like prednisone,well ,pred is a DMARD

and that is why you were using pulsed antibiotics.He says that heavy

doses suppress the immune system.

While I am here I might as well post a couple of articles I have

been meaning to pass on for the last six months.All are about SD and

maybe Ethel would want to move them somewhere so that all SDers can read

them.

As usual I screwed this up,just ignore the first 3 lines below.Can't

remove them.UG

Lynne

http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3

<http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3 & itool=EntrezSystem2.PE\

ntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPane\

l.Pubmed_RVDocSum

http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?cr\

awler=true

http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2

<http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2 & itool=EntrezSystem2.PE\

ntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPane\

l.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3

<http://www.ncbi.nlm.nih.gov/pubmed/17941947?ordinalpos=3 & itool=EntrezSystem2.PE\

ntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPane\

l.Pubmed_RVDocSum

http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?cr\

awler=true

http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2

<http://www.ncbi.nlm.nih.gov/pubmed/19022534?ordinalpos=2 & itool=EntrezSystem2.PE\

ntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPane\

l.Pubmed_RVDocSum

http://bacteriality.com/2007/09/11/cantwell/

http://www.answers.com/topic/bartonella

http://www.answers.com/topic/bartonella

>

>

> Hi Ethel, I looked it up also and what I can't understand is that

> Minocin is an antibiotic when given at a lower dose and pulsed, but

> when given at a higher dose and daily, it becomes a DMARD. How do

> they know this? And at what point does it change. For the first two

> and a half years, I follow with Dr.T. in Boston. Then I went to Dr.

> Whitman in N.J when I decided to go on MP. He didn't want me to

> follow the Benicar blockade part, so I stopped going to him, bought

> the dark glasses and toned down all the lights. About 6 months into

> that and my ANA started to get lower but the RF was still in the

> 30's. Then about 2 years later, the ANA went normal, but the RF was

> still slightly up. This last draw the RF was normal. So, I decided

> to pulse minocin on MWF at 100mg. The first thing I noticed is that

> my nose started running. That hasn't happened since the first two

> years of my therapy.Dr. T. never told me directly that I had

> scleroderma. It was the dermatologist who diagnosed me when he saw

> the vitiligo markings on my forehead. I am the one who told Dr. T.

> that I had scleroderma. He put me on Minocin 100mg, twice daily and I

> didn't switch to the other antibiotics till I went on MP. I was well

> into my 2.5 yrs of illness at that time. Since then I have taken

> Minocin off and on. For a while I took doxy, clindy and zith. Then I

> substitued Bactrim for clindy for a while. At that time there was

> change at the MP.site. The people who were following the progress all

> left and new people showed up...That made me nervous, so I didn't

> report in any more and just used my copy of the third phase to

> continue. I stopped the 3rd phase a few months ago. Now my new doc

> doesn't have a clue, so I'm just doing what I think is right. I think

> the faq sheet said to take Mino MWF, but didn't specify if the dose

> should be 100mg or 200mg . This is the part that confuses me. When

> is the drug a DMARD and when is the same drug an antibiotic. And

> should I be taking it as a DMARD or as an antibiotic. I've heard of

> this before, but never really understood it. It just doesn't make

> sense to me. Do any of you who have reached remission or had your

> labs come back completely normal, still use the Minocin MWF and at

> what dosages. Is this going to be a life long treatment or will

> there be a time when I can be drug and disease free? I think I will

> have to re read Dr. Brown's book again to be sure I'm following his

> protocol. Thank you for your effort and your time. Dolores & Mike

>

>

>

> From: ehgooding <ehgoodingcox (DOT) net>

> Subject: RE: rheumatic Re: mino/dizzy update

> rheumatic@grou ps.com

> Date: Saturday, February 13, 2010, 3:42 PM

>

> Hi all,

>

> I was on Minocin, 100 mg daily, for almost three years to treat RA &

> Lyme's.

> I never herxed and I improved steadily. After three months I no longer had

> 'sausage' fingers, no more Raynaud's, I had more energy, less pain,

> etc. So

> while I would fill an RX recommending twice as much med as I was going to

> take - it lasted twice as long and I avoided interim price increases

> (smile)

> I only took 100mg a day.

>

> By the way, I had one Dr. tell me to never take Minocin after the

> expiration

> date. I managed to use mine up before that, and I normally don't worry

> about expiration dates, but there was just something in the way he

> said that

> make me take heed. Has anyone come across that advice before and know the

> reason why he might have said it? Regards to all, El

>

> _____

>

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

> Behalf

> Of pcalvert.rm

> Sent: Saturday, February 13, 2010 12:22 PM

> rheumatic@grou ps.com

> Subject: rheumatic Re: mino/dizzy update

>

> Hello Dolores,

>

> A dose of 100 mg twice a day is (apparently) normal for some patients, but

> not all. For example, I have noticed that 100 mg of minocycline twice

> a day

> is the dose normally prescribed for people with scleroderma. However, for

> people with " autoimmune " diseases that have inflammation as a significant

> component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

> easily be too much.

>

> By the way, with daily dosing, minocycline is being used as a DMARD. It is

> *not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

> Sometimes it is referred to it as the Harvard Protocol.

>

> NOTE: I am not a medical professional. I am just passing along what I have

> learned with the hope that it might be helpful to other people.

>

> Phil

>

>

> >

> > Dear Kathy,

> >

> > I just want to say that when I was first diagnosed, my husband and I

> flew

> to Boston to see Dr. T who was highly recommended an an A/P doctor. He

> immediately put me on 100mg twice a day and I have been on that for the

> better part of 4 years. No one ever told me that this is an excessive

> dose.

> >

> >

>

>

[Guest guest]

Hi Dolores,

I am thinking about IV’s again because I can’t take Minocin anymore and I

have tried all the other antibiotics that my myco will respond to. I have

started to have problems with specific joints (unlike the first time). I have 2

toes that are swollen (I never had swelling before) red and painful. I also have

two knuckles that are red swollen and painful. This started after I got lax for

about 6 months with the Minocin last year. I used oral Clindy and IM clindy

before the IV’s and after the first 5 days of IV’s my whole left hand was

normal(I am talking about 12 years ago). The rest of my body responded and I

only ended up with 2 small deformities. Apparently my myco may respond better to

IV clindy than anything else. Clindy is a lincosomide not a macrolide. I just

emailed my doc to see if he would do it. The only thing I am afraid of is that

the symptoms I am having may just be regular ol arthritis from being old!!! I

saw him in October and did not have the knuckle problem just the toes and he

felt I needed trigger point therapy.

I never have had a problem with any antibiotic like having diarrhea but I use

diflucan frequently (not every day). I also do a good probiotic. My story is on

the histories page in case you want to read it. I should really update it. Maybe

after I solve my current problem.

COLD INTOLLERENT! Have your doctor do a FERRITIN level. NOT a CBC or RBC but a

specific FERRITIN level. It measures iron in your body. If it turns out you are

in the lower bracket you may still need to supplement with iron. Do not take

iron before the test since lots of people have too much iron which is not good.

My level was so low I was freezing in the summer without air conditioning and at

the time having hot flashes too! Talk about upsetting.

Yes I think IV clindy (my personal observation) goes straight to the mycos. Oral

need to go thru the GI tract and can irritate and also just slide thru. The IM

just gave me massive bruises and I think just sayed in my fat buttocks! As for

the diarrhea…please take lots of probiotics and Diflucan for at least 2 days

after the IV. PLEASE read up on Clindy.

Well Dolores I would be dead if not for antibiotics because I was in such pain

and getting worse. I would not have wanted to live like I was. Thank GOD for Doc

Brown and all the people like Ethel who run these boards for the info I needed.

Hugs,

cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Sunday, February 14, 2010 3:56 AM

rheumatic

Subject: RE: rheumatic Re: mino/dizzy update

Hi Cooky, I really appreciate all the info I am getting. I think you solved the

problem I was having trying to figure out when Minocin (antibiotic becomes a

DMARD) and how it works. That part I could understand that Rheumies have to

cover themselves first or they risk losing their livelyhood. When I was going

to the Infectious disease doctor, I told him I was taking oral clindamycin as

part of the MP. He didn't seem to like that and told me to take something else.

Well, on the MP sheet, it said I could substitue Bactrim, so I did for a while.

I moved to an Island off of Puerto Rico because I am very cold intolerant. I

even wear a sweater in Puerto Rico where it is 80 degrees most of the time. Last

year, my husbands Raynauds became worse and that settled it, we moved. Now my

new doc who comes to the Island by boat has never even seen a patient with

scleroderma. I told him about the antibiotic protocol and gave him the FAQ

sheet (in

Spanish). I know many people have had clindamycin IV's. And there is a

protocol for that. But I don't know what it is and so I can't explain to the doc

how to do it. I don't know how comfortable he would be. We have not discussed

it. Does IV Clindamycin work differently than oral clindy. I suffered from

constant diarrhea for two years and I think it was the clindy that did it.

Well, now I am having normal bm's two to three times a day. I know Dr. Franco

in California asks people to restrain from starting antibiotics till he has

checked for the offending bacteria. Then he starts the IV clindamycin. I am

puzzled by you wanting to go back on IV clindamycin. I thought that was only

given at the onset of the disease, not after you've been on antibiotics. Since

clindamycin is a macrolide, what does it do that Minocin doesn't? And why would

someone who appears to be in remission go back on IV meds. Yes, I read Dr.

Brown's book a

while back and the one he wrote with Henry Scammell. I recently re read

Scammell's book about scleroderma. I always find something I missed so, that is

what I am going to do tomorrow. I'll read my copy of the Road Back again and

The new Arthritis Breakthrough. I had planned on doing that anyway. Thank you

for all the information. I hope I am not asking too many questions. I was

never too clear on what I was doing. I had severe brain fog thru most of my

treatment. I feel like I am waking up from a nightmare I have had for almost 5

years. I am just starting to understand. All I knew was what the first batch

of Rhuemys I saw told me They said that I was terminal and there was no cure,

but that they could keep me comfortable by giving me steroids chemo, and

suppressants, I bolted out the door and then heard about the antibiotic protocol

from Lynne G, She explained it, even tho' I was in a fog, I chose to do the A.P

rather than

take the toxic meds I figured since those docs really had nothing to offer me

and I was gonna die from this disease soon anyway I would be better off with the

antibiotics. I chose right. It's been 5 years and I am much better than I was

then. I'm just older, more wrinkled and look like I have been through a war for

5 years. Thank you for everything. My best to all of you, Dolores

From: Cooky Stonkey <cookee1comcast (DOT) net <mailto:cookee1% 40comcast. net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@ grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Dolores

I think Minocin was accepted as DMARD - Disease Modifying Anti-Rheumatic

Drug - after Dr. Trentham's study was published. He used 100mg 2X a day in

the study, so that is what that dosage recommendation is. Doesn't mean

other dosages don't work, but the study was of that protocol.

Take care,

Ute

[Guest guest]

Hi Debbie,

Are you able to get brand name Minocin? Does your insurance pay for it? I

would recommend this over doxy or biaxin. Start SLOWLY if you do get it.

Same for your daughter. This is a long term protocol. It may take a LONG

time to help. I can't say what will help positively because I don't think

anyone can. Before you started antibiotics you should have been tested to

see what mycoplasma you have and pinpointing the type of antibiotic could

have been a little better but Minocin is a good bet for most people. Have

you read Doc Brown's book? Have you read all the info on this site? I think

reading these would help you understand better.

Keep reading the notes here and good luck!

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of azbeadingaddict

Sent: Saturday, February 13, 2010 9:57 PM

rheumatic

Subject: rheumatic Re: mino/dizzy update

Hi,

My name is Debbie and I am new to this group. I was diagnosed in 1995 with

Scleroderma & Raynaud's. I have the sausage fingers too! And digital ulcers.

I have tested positive for a few bands for Lyme but not CDC positive and

both of my children have health issues - chronic infections. I have been on

long-term antibiotics, mostly zithromax then included doxycycline. No matter

how much I beg, my doctor will not do IVs; he is an expert in the area of

vector-borne infections and he does not want to wind up like

or any other doctor brought before the medical boards. We switched my meds

in September to Biaxin and Plaquenil and I got very anxious and stopped

taking them. We are now starting back on a higher doseage of doxy (100mg

2x/day) and the zithromax (250 2x/day) - do you know if this combo will help

with the sausage fingers and ulcers? Also, my daughter (almost 12) has

consistently tested positive for Mycoplasma pneumoniae both IGG and IGE

since she was 5 and always feels sick. Any advice on that?

Thank you so much.

[Guest guest]

Well said, Cookey  I started to read Dr. Brown's book again.  How quickly I

forgot.  I read it several times when I was first diagnosed.  I must have been

in quite a fog.  Now that the haze is cleared up somewhat, it is like reading

it again for the first time.  Can't wait to finish the book.  Thank you for

all your input.  With love to all, Dolores & Mike

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic

Date: Sunday, February 14, 2010, 3:52 PM

 

Hi Debbie,

Are you able to get brand name Minocin? Does your insurance pay for it? I

would recommend this over doxy or biaxin. Start SLOWLY if you do get it.

Same for your daughter. This is a long term protocol. It may take a LONG

time to help. I can't say what will help positively because I don't think

anyone can. Before you started antibiotics you should have been tested to

see what mycoplasma you have and pinpointing the type of antibiotic could

have been a little better but Minocin is a good bet for most people. Have

you read Doc Brown's book? Have you read all the info on this site? I think

reading these would help you understand better.

Keep reading the notes here and good luck!

cooky

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

Of azbeadingaddict

Sent: Saturday, February 13, 2010 9:57 PM

rheumatic@grou ps.com

Subject: rheumatic Re: mino/dizzy update

Hi,

My name is Debbie and I am new to this group. I was diagnosed in 1995 with

Scleroderma & Raynaud's. I have the sausage fingers too! And digital ulcers.

I have tested positive for a few bands for Lyme but not CDC positive and

both of my children have health issues - chronic infections. I have been on

long-term antibiotics, mostly zithromax then included doxycycline. No matter

how much I beg, my doctor will not do IVs; he is an expert in the area of

vector-borne infections and he does not want to wind up like

or any other doctor brought before the medical boards. We switched my meds

in September to Biaxin and Plaquenil and I got very anxious and stopped

taking them. We are now starting back on a higher doseage of doxy (100mg

2x/day) and the zithromax (250 2x/day) - do you know if this combo will help

with the sausage fingers and ulcers? Also, my daughter (almost 12) has

consistently tested positive for Mycoplasma pneumoniae both IGG and IGE

since she was 5 and always feels sick. Any advice on that?

Thank you so much.

[Guest guest]

Hi Ute.  I got some e:mails explaining the use of Minocin as a DMARD and as an

antibiotic.  I was a bit confused with that.  As a DMard the larger and more

frequent dose reduces inflamation.  As an antibiotic in smaller doses and less

frequency, it acts as an antibiotic.  I am in the process of reading again the

Road Back by Brown & Hammell.  It is amazing how brain fog obscured all I

read.  I am reading it again as if it were for the first time.  Can't wait to

finish it and get to the New " Arthritis Breadthrough "   I'm sure re reading it

again will stimulate my memory.  At least I hope so.  Thank you for all your

imput.  On the overall, I am doing well.  My ANA was 1:640 now it is 0.  My

RF was around 38 a year ago, now it is 0.  Of course I am elated and swear by

minocin.  Thank you, Love to all, Dolores * Mike

From: Ute <nowyoga@...>

Subject: Re: rheumatic Re: mino/dizzy update

rheumatic

Date: Sunday, February 14, 2010, 12:32 PM

 

Dolores

I think Minocin was accepted as DMARD - Disease Modifying Anti-Rheumatic

Drug - after Dr. Trentham's study was published. He used 100mg 2X a day in

the study, so that is what that dosage recommendation is. Doesn't mean

other dosages don't work, but the study was of that protocol.

Take care,

Ute

[Guest guest]

I'll be sure to ask for the ferretin lab test.  I am prone to develop anemia. 

Have been since childhood.  As a child, I had to take liquid iron and then

again with each of my two pregnancies.  At the onset of my disease I was again

very anemic.  I hate it that I can't seem to hold on to my iron.  The hard

part of being cold while also being post menopausal

is shivering while you are sweating.  Gross, gross feeling.  You men are

fortunate.  Hehe!  Dolores & Mike

From: Cooky Stonkey <cookee1comcast (DOT) net <mailto:cookee1% 40comcast. net> >

Subject: RE: rheumatic Re: mino/dizzy update

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, February 13, 2010, 5:06 PM

El,

Tetracycline can be toxic if it is past it's due date. I would imagine if it

were a few weeks past that it would not hurt. I think over a year is what

they meant. As the doctor I worked for said.no one can say " this medicine is

going to expire on a specific date and year " . I know myself I had cough

syrup that was about 4 yrs old (long time ago) and it worked better that the

new stuff on the market. Except for tetracycline I just go by looks and

smell of a product.

cooky

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

Of ehgooding

Sent: Saturday, February 13, 2010 3:42 PM

rheumatic@grou ps.com

Subject: RE: rheumatic Re: mino/dizzy update

Hi all,

I was on Minocin, 100 mg daily, for almost three years to treat RA & Lyme's.

I never herxed and I improved steadily. After three months I no longer had

'sausage' fingers, no more Raynaud's, I had more energy, less pain, etc. So

while I would fill an RX recommending twice as much med as I was going to

take - it lasted twice as long and I avoided interim price increases (smile)

I only took 100mg a day.

By the way, I had one Dr. tell me to never take Minocin after the expiration

date. I managed to use mine up before that, and I normally don't worry

about expiration dates, but there was just something in the way he said that

make me take heed. Has anyone come across that advice before and know the

reason why he might have said it? Regards to all, El

_____

From: rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

[mailto:rheumatic@ grou ps.com <mailto:rheumatic% 40groups. com> ] On

Behalf

Of pcalvert.rm

Sent: Saturday, February 13, 2010 12:22 PM

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Subject: rheumatic Re: mino/dizzy update

Hello Dolores,

A dose of 100 mg twice a day is (apparently) normal for some patients, but

not all. For example, I have noticed that 100 mg of minocycline twice a day

is the dose normally prescribed for people with scleroderma. However, for

people with " autoimmune " diseases that have inflammation as a significant

component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

easily be too much.

By the way, with daily dosing, minocycline is being used as a DMARD. It is

*not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

Sometimes it is referred to it as the Harvard Protocol.

NOTE: I am not a medical professional. I am just passing along what I have

learned with the hope that it might be helpful to other people.

Phil

>

> Dear Kathy,

>

> I just want to say that when I was first diagnosed, my husband and I flew

to Boston to see Dr. T who was highly recommended an an A/P doctor. He

immediately put me on 100mg twice a day and I have been on that for the

better part of 4 years. No one ever told me that this is an excessive dose.

>

>

[Guest guest]

Hi Lynne & Santos  I have been in a brain fog for about 4.5 years.  I know I

read all that, but lately it is like I'm reading it all over again and it has

taken on new meanings for me.  I am re reading the Brown & Scammell,

book " The Road Back "   Just finished the scleroderma book by Scammell and will

read the " New Arthritis Breakthrough " again also.  How do you like my RF and

ANA results?  I am bouncing off the walls for that.  You got a flower named

after you?  How exciting!  Congratulations  When I sart growing flowers, I

will send you some if I am able.  We are going to see some more houses this

week. We are just waiting for the bank to send the papers on our RV to the DMV

so we can register the vehicle.  Right now we are lacking transportation. 

That is a bummer.  On Friday morning, I am flying to St. Croix alone to spend a

few days with .  Mike says I need to get away from the responsibility of

taking care of mom.  He says he

can handle it.  You don't think I turned down the offer.  Especially when

promised to pay for my ticket.  RT.  I could really use the break. 

Congratulations on your new Flower.  " Lynne " , that is a nice name for a

flower.  Send a photo when you can.  Did you guys get a lot of snow?  The

U.S. had 49 states covered with snow at the same time.  Glad I'm in the

tropics.  Take care, give Santos a big smackeroo from us.  Love Dodo & Mike 

>

> From: ehgooding <ehgoodingcox (DOT) net>

> Subject: RE: rheumatic Re: mino/dizzy update

> rheumatic@grou ps.com

> Date: Saturday, February 13, 2010, 3:42 PM

>

> Hi all,

>

> I was on Minocin, 100 mg daily, for almost three years to treat RA &

> Lyme's.

> I never herxed and I improved steadily. After three months I no longer had

> 'sausage' fingers, no more Raynaud's, I had more energy, less pain,

> etc. So

> while I would fill an RX recommending twice as much med as I was going to

> take - it lasted twice as long and I avoided interim price increases

> (smile)

> I only took 100mg a day.

>

> By the way, I had one Dr. tell me to never take Minocin after the

> expiration

> date. I managed to use mine up before that, and I normally don't worry

> about expiration dates, but there was just something in the way he

> said that

> make me take heed. Has anyone come across that advice before and know the

> reason why he might have said it? Regards to all, El

>

> _____

>

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

> Behalf

> Of pcalvert.rm

> Sent: Saturday, February 13, 2010 12:22 PM

> rheumatic@grou ps.com

> Subject: rheumatic Re: mino/dizzy update

>

> Hello Dolores,

>

> A dose of 100 mg twice a day is (apparently) normal for some patients, but

> not all. For example, I have noticed that 100 mg of minocycline twice

> a day

> is the dose normally prescribed for people with scleroderma. However, for

> people with " autoimmune " diseases that have inflammation as a significant

> component (e.g., rheumatoid arthritis), 200 mg of minocycline a day could

> easily be too much.

>

> By the way, with daily dosing, minocycline is being used as a DMARD. It is

> *not* the same as the Antibiotic Protocol (AP) developed by Dr. Brown.

> Sometimes it is referred to it as the Harvard Protocol.

>

> NOTE: I am not a medical professional. I am just passing along what I have

> learned with the hope that it might be helpful to other people.

>

> Phil

>

>

> >

> > Dear Kathy,

> >

> > I just want to say that when I was first diagnosed, my husband and I

> flew

> to Boston to see Dr. T who was highly recommended an an A/P doctor. He

> immediately put me on 100mg twice a day and I have been on that for the

> better part of 4 years. No one ever told me that this is an excessive

> dose.

> >

> >

>

>