Re: Mino plus methotrexate?

[Guest guest]

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

This is really scary for me because I have my son who is only 15 on

mino because everyone seemed to be in remission. With Cooky and Ros now ill,

are we sure this is the way to go. He has deformities in his fingers from

his scleroderma/RA/lyme and I keep wondering if I should put him on

methotrexate but everyone seemed to be doing so well on the mino that he has

been on it for almost 3 years but I really don’t think he is getting better.

Sue

From: rheumatic [mailto:rheumatic ] On Behalf

Of Cooky Stonkey

Sent: Sunday, March 13, 2011 6:50 PM

rheumatic

Subject: RE: rheumatic Mino plus methotrexate?

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic <mailto:rheumatic%40>

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

Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

Hi Sue,

yea, must say hearing these stories scares me too, and sadness for them.

Someone said that there are many many people in remission, living a good life,

and just no longer in the group. I was on methotrexate (RA 4 and 1/2 yr)) for

about 8 months. Took 5 months to do anything, then I had some what of a life

for 3 months. rhemy wanted to add 2 more cocktails along with metho. Went home

and researched everything, freaked me out, so stopped metho. I'm only on AP now

going on 8 months. Feel a little better, but can't get around (both hips need

replaced). We need the immune system to kill off these critters....and drugs

kill immune system. My doc commented " RA drugs are most toxic drugs out there,

with worse side effects " Do you have an AP doc?

For those of you who were in remission, and now having challenges....anyone talk

to doc Sinnott about this, or some long term AP doc? I get so discouraged

wondering if this will work, but feel it's the best way to go. I also have to

keep positive and know that new breakthroughs happen all the time.

I don't want ANYONE to be sick or have to have these cruel diseases........but

it should be a Universal law that children are exempt! I pray that grows

up into a much healthier, peaceful world. Sally

RE: rheumatic Mino plus methotrexate?

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic <mailto:rheumatic%40>;

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

Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

Sally,

Thank you for replying. has been to see Dr. Sinnott and he is also on

IV’s once a month. I too wonder what Dr. S would say about

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Sent: Sunday, March 13, 2011 8:00 PM

rheumatic

Subject: Re: rheumatic Mino plus methotrexate?

Hi Sue,

yea, must say hearing these stories scares me too, and sadness for them. Someone

said that there are many many people in remission, living a good life, and just

no longer in the group. I was on methotrexate (RA 4 and 1/2 yr)) for about 8

months. Took 5 months to do anything, then I had some what of a life for 3

months. rhemy wanted to add 2 more cocktails along with metho. Went home and

researched everything, freaked me out, so stopped metho. I'm only on AP now

going on 8 months. Feel a little better, but can't get around (both hips need

replaced). We need the immune system to kill off these critters....and drugs

kill immune system. My doc commented " RA drugs are most toxic drugs out there,

with worse side effects " Do you have an AP doc?

For those of you who were in remission, and now having challenges....anyone talk

to doc Sinnott about this, or some long term AP doc? I get so discouraged

wondering if this will work, but feel it's the best way to go. I also have to

keep positive and know that new breakthroughs happen all the time.

I don't want ANYONE to be sick or have to have these cruel diseases........but

it should be a Universal law that children are exempt! I pray that grows up

into a much healthier, peaceful world. Sally

RE: rheumatic Mino plus methotrexate?

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic <mailto:rheumatic%40>

<mailto:rheumatic%40>;

[mailto:rheumatic <mailto:rheumatic%40>

<mailto:rheumatic%40>; ] On

Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

Would sure be worth a call to doc S. He is so helpful when I call (I've not met

him...he's 5 hr drive from me---hope to someday) At least if might give you some

renewed hope. I just recently completed 5 days of home IV's (900 units twice

day) after 8 months on AP. Not sure what to do next??? Do I go on weekly or

biweekly iv? Don't have local doc who will approve IVs at hospital, so have to

pay for them myself. How many days does do each month? sally

RE: rheumatic Mino plus methotrexate?

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic <mailto:rheumatic%40>;

<mailto:rheumatic%40>;;

[mailto:rheumatic <mailto:rheumatic%40>;

<mailto:rheumatic%40>;; ] On

Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

Hi Sue,

First let me say again that this is a long term medicine. Patience is the

word here. I still believe in it. Maybe needs to increase..decrease..

add another or change his med. Also when was the last time he had any

testing done? His test results may be getting better before he does. I don't

remember if I sent you a list of things Ethel sent a while back. It will be

at the end of this message. I personally like the idea of methotrexate and

Mincin but it is up to you. Also what kind of anti inflamatory is he on? He

definitely needs one.

The following is from the FAQ on www.rheumatic.org. Additional comment is

mine and is in red.

Ethel

" 13. I HAVE BEEN ON 100 MG. OF MINOCYCLINE MONDAY, WEDNESDAY AND FRIDAY FOR

SIX MONTHS AND HAVE SEEN NO RESPONSE. CAN I STILL EXPECT IMPROVEMENT?

Yes, however you should have some indication by this time that the

antibiotic is working for you. Your doctor needs to do a little detective

work at this point. (I've known cases including mine where it took a lot

longer than six months to see any sign of improvement. For me, it was well

over a year before I saw any sign that the therapy may be working. In fact,

for most of that time I got progressively worse. Years ago there was a woman

on this group that didn't see improvement for nearly 5 years! Was that woman

ever glad she hadn't decided to give up.) Here are some things to check:

a. Laboratory tests should be run again. Often improvement in these tests

will precede improvement of symptoms.

b. If you are on a generic minocycline, change manufacturers or switch to

the brand name. Patients have discovered that not all generic minocycline or

doxycycline is equivalent. Many physicians prescribe the brand name to avoid

this risk.

c. Try a different antibiotic. All patients may not respond to minocycline

or doxycline. Some physicians add Zithromax. If you are taking the

minocycline Monday, Wednesday and Friday, the dose for the Zithromax is 250

mg. twice daily Tuesday and Thursday.

(Adding an anti-fungal may be necessary. There have been reports of success

using the combination Minocin, Flagyl and Nystatin. The liver should be

monitored closely when using anti-fungals.)

d. Try one antibiotic in the morning and a different one at night, or

sequence them taking one for six weeks and then switching to another for six

weeks.

e. If your disease is severe, long standing or very resistant, and you are

only on oral antibiotics, you will need to add intravenous therapy.

f. Look for other sources of infection in the sinuses, allergies, root

canals (www.altcorp.com), intestinal tract, etc. that may be impeding your

progress and must be addressed for optimum benefit from this therapy. The

first area to check is the intestinal tract for candida overgrowth and leaky

gut. There are special labs that perform these tests:

Immuno-Science Lab in Beverly Hills, CA - candida

www.immuno-sci-lab.com or 1-800-950-4686

AAL Reference Laboratories, Inc. in Santa Ana, CA - candida

www.antibodyassay.com or 1-800-522-2611

Genova Diagnostics, Ashville, NC - candida and the lactulose mannitol test

for leaky gut

www.gdx.net - 1-800-522-47

g. Were you tested for strep? If the results were positive, treatment should

be prescribed. (See Section 12.) The strep organism can be very difficult to

eradicate, so even after the titer returns to normal, the patient should be

monitored for some time for recurrence. The goal of the therapy is to remove

antigen wherever it may be found in the body in order to achieve optimum

benefit from this therapy.

h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is

necessary.

i. Did your doctor have the mycoplasma test run? It should be run for the

entire panel and not just for M. pneumoniae. The first test may be negative

if the immune system is too weak to mount an antibody attack to the

organism. Therefore, it is important to repeat the test within 3 to 6

months. If it is still negative, the medication should be changed. The

tetracycline antibiotic still works in some instances of a negative reading.

If the cause is viral the antibiotic therapy may fail. Additionally, the

cause could be streptococcus infection compounded with a mycoplasma

infection or vice versa.

Laboratories performing this special mycoplasma testing are listed on this

web site in the section titled 'Information for You and Your Doctor'.

j. Are there hormonal imbalances that need correcting?

k. Chronic neurotoxins may be another reason for lack of response to this

therapy. These toxins are low molecular weight, fat soluble toxins,

sequestered in the adipose tissues of the body. Rather than being eliminated

normally, they are reabsorbed and continue to be accumulated and circulated

in the body. They impact the nervous system, the endocrine system and the

immune system. (Patients report improvement in brain fog and ability to

concentrate when these toxins are removed.) There is a vision test available

on the net that can be taken to determine if neurotoxins are present. For

more information visit Dr. Ritchie Shoemaker's site -

www.chronicneurotoxins.com. Dr. Shoemaker has written a book on this subject

titled 'Desperation Medicine'. [Note: Not all neurotoxins respond to the

therapy developed by Dr. Shoemaker. Neurotoxins unresponsive to Dr.

Shoemaker's protocol may be helped by the protocol of Dr. Kane.

www.detoxxbook.com or www.bodybio.com

l. E. Berg, director of Hemex Laboratories in Phoenix, AZ has

discovered that a number of infections, including mycoplasmas, can trigger

the blood clotting system to become active, preventing oxygen and

antibiotics from reaching and destroying the pathogen. This is called

hypercoagulation. The Hemex Lab ISAC panel can be run to determine if this

is a problem. If this test is positive, appropriate blood thinning agents

may be prescribed. For more information go to www.hemes.com or call

1-800-999-2568. Check with your physician for non-prescription agents that

may be appropriate.

m. Consider testing for Lyme Disease which mimics so many rheumatic

diseases. Refer to Sections 1 and 18 for more information on Lyme Disease.

If a patient has been experiencing improvement on this therapy and then

notices that progress has stopped or he/she even seems to be regressing, the

information in this section will aid their doctor in determining what is

impeding that progress.

Dr. Lida Matman (now deceased), was considered the authority on stealth

pathogens, and she said there are times when a patient may plateau on a

therapy and the cause may be that there is an underlying organism that needs

a different antibiotic to eradicate, and once eradicated you can go back on

the first antibiotic and it will begin working for you again.

I hope Ran is better soon. My heart breaks when a cild has this awful

disease.

Blessings

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of Mazik?

This is really scary for me because I have my son who is only 15 on

mino because everyone seemed to be in remission. With Cooky and Ros now ill,

are we sure this is the way to go. He has deformities in his fingers from

his scleroderma/RA/lyme and I keep wondering if I should put him on

methotrexate but everyone seemed to be doing so well on the mino that he has

been on it for almost 3 years but I really don't think he is getting better.

Sue

[Guest guest]

Sally,

Dr. S has on once a month IV of only 900 – he said if I wanted to put him

on methotrexate, he was ok with that but to please stay on AP.

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Sent: Sunday, March 13, 2011 8:50 PM

rheumatic

Subject: Re: rheumatic Mino plus methotrexate?

Would sure be worth a call to doc S. He is so helpful when I call (I've not met

him...he's 5 hr drive from me---hope to someday) At least if might give you some

renewed hope. I just recently completed 5 days of home IV's (900 units twice

day) after 8 months on AP. Not sure what to do next??? Do I go on weekly or

biweekly iv? Don't have local doc who will approve IVs at hospital, so have to

pay for them myself. How many days does do each month? sally

RE: rheumatic Mino plus methotrexate?

Well Ros, I have great empathy for you because I am basically in the same

predicament. I started in 1997 was in remission about 1999 with flares here

and there. Summer of 09 I got very sloppy about taking Minocin (brand).

Started with the backs of my heels and middle toes in pain. By March of 2010

I had both rotator cuffs so bad I could not raise my arms. Minocin was not

working. By Agust I started IV’s again and get one every week till the

present. I too have deformities which are minor but scary. My big toe has

what looks to be a rheumatoid nodule and from what I have read you get them

when you are bad off. I use my hands as before and walk the same but my

finger joints hurt and are getting big, My toe is painful. My feet in

general are sore.The back of my heel is very painful when I walk. I am

scared.

I was advised by Ethel and my doctor to detox. I started 2 ½ months ago and

so far I feel no different (the nodule has only been here for 2 weeks). For

the candida I suggest you try oregano. I too take Diflucan and nystatin but

have found Oreganol works just as well.

I am sorry I can’t help any more. I’m confused myself.

Blessings,

cooky

From: rheumatic <mailto:rheumatic%40>

<mailto:rheumatic%40>; <mailto:rheumatic%40>;;

[mailto:rheumatic <mailto:rheumatic%40>

<mailto:rheumatic%40>; <mailto:rheumatic%40>;; ]

On

Behalf

Of rosmaau?

I'm wondering whether anyone on this list is using methotrexate as well as

minocycline for RA. I've been on minocycline for six years now and when I

was having it with plaquenil all was well. But I had to stop the plaquenil a

year ago and now I'm getting deformities. I have the horrors about going on

to methotrexate but the minocycline doesn't seem to be working well enough

any more and am at my wit's end. In the past year I have gone from 100mgs 3

times a week, then to five times a week, and am now on 200mgs a day but

nothing is making any difference. I'm not herxing as far as I can tell.

Everything is just getting worse and I've been on the wonderful/horrible

prednisone since November, only 2mg by now but lots of pain.

I'm doing all the diet and supplement things that I can afford (no income

but age pension). My doctor refuses to do IV's or other antibiotics and I'm

lucky that he will prescribe mino for me as I'm not near a city so don't

have much choice of doctors. I wondered about using doxycycline instead for

a while but it's apparently worse for candida which I have chronically and

am always on candida diet and medication (Diflucan and nystatin).

Any other experiences of what to do would be welcome.

[Guest guest]

Cooky,

The problem is, 's labs have never been bad so it is impossible to say.

He had a skin biopsy 3 years ago which tested positive for Morphea. Now, his

fingers are curled (from RA NOT sclera) and he can not bend his wrists. I

almost wish his labs were bad so we could track his progress but the only

elevation he ever had was his ESR for inflammation and allergies. He does

have mycoplasma pneumonia and strep

From: rheumatic [mailto:rheumatic ] On Behalf

Of Cooky Stonkey

Sent: Sunday, March 13, 2011 11:07 PM

rheumatic

Subject: RE: rheumatic Mino plus methotrexate?

Hi Sue,

First let me say again that this is a long term medicine. Patience is the

word here. I still believe in it. Maybe needs to increase..decrease..

add another or change his med. Also when was the last time he had any

testing done? His test results may be getting better before he does. I don't

remember if I sent you a list of things Ethel sent a while back. It will be

at the end of this message. I personally like the idea of methotrexate and

Mincin but it is up to you. Also what kind of anti inflamatory is he on? He

definitely needs one.

The following is from the FAQ on www.rheumatic.org. Additional comment is

mine and is in red.

Ethel

" 13. I HAVE BEEN ON 100 MG. OF MINOCYCLINE MONDAY, WEDNESDAY AND FRIDAY FOR

SIX MONTHS AND HAVE SEEN NO RESPONSE. CAN I STILL EXPECT IMPROVEMENT?

Yes, however you should have some indication by this time that the

antibiotic is working for you. Your doctor needs to do a little detective

work at this point. (I've known cases including mine where it took a lot

longer than six months to see any sign of improvement. For me, it was well

over a year before I saw any sign that the therapy may be working. In fact,

for most of that time I got progressively worse. Years ago there was a woman

on this group that didn't see improvement for nearly 5 years! Was that woman

ever glad she hadn't decided to give up.) Here are some things to check:

a. Laboratory tests should be run again. Often improvement in these tests

will precede improvement of symptoms.

b. If you are on a generic minocycline, change manufacturers or switch to

the brand name. Patients have discovered that not all generic minocycline or

doxycycline is equivalent. Many physicians prescribe the brand name to avoid

this risk.

c. Try a different antibiotic. All patients may not respond to minocycline

or doxycline. Some physicians add Zithromax. If you are taking the

minocycline Monday, Wednesday and Friday, the dose for the Zithromax is 250

mg. twice daily Tuesday and Thursday.

(Adding an anti-fungal may be necessary. There have been reports of success

using the combination Minocin, Flagyl and Nystatin. The liver should be

monitored closely when using anti-fungals.)

d. Try one antibiotic in the morning and a different one at night, or

sequence them taking one for six weeks and then switching to another for six

weeks.

e. If your disease is severe, long standing or very resistant, and you are

only on oral antibiotics, you will need to add intravenous therapy.

f. Look for other sources of infection in the sinuses, allergies, root

canals (www.altcorp.com), intestinal tract, etc. that may be impeding your

progress and must be addressed for optimum benefit from this therapy. The

first area to check is the intestinal tract for candida overgrowth and leaky

gut. There are special labs that perform these tests:

Immuno-Science Lab in Beverly Hills, CA - candida

www.immuno-sci-lab.com or 1-800-950-4686

AAL Reference Laboratories, Inc. in Santa Ana, CA - candida

www.antibodyassay.com or 1-800-522-2611

Genova Diagnostics, Ashville, NC - candida and the lactulose mannitol test

for leaky gut

www.gdx.net - 1-800-522-47

g. Were you tested for strep? If the results were positive, treatment should

be prescribed. (See Section 12.) The strep organism can be very difficult to

eradicate, so even after the titer returns to normal, the patient should be

monitored for some time for recurrence. The goal of the therapy is to remove

antigen wherever it may be found in the body in order to achieve optimum

benefit from this therapy.

h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is

necessary.

i. Did your doctor have the mycoplasma test run? It should be run for the

entire panel and not just for M. pneumoniae. The first test may be negative

if the immune system is too weak to mount an antibody attack to the

organism. Therefore, it is important to repeat the test within 3 to 6

months. If it is still negative, the medication should be changed. The

tetracycline antibiotic still works in some instances of a negative reading.

If the cause is viral the antibiotic therapy may fail. Additionally, the

cause could be streptococcus infection compounded with a mycoplasma

infection or vice versa.

Laboratories performing this special mycoplasma testing are listed on this

web site in the section titled 'Information for You and Your Doctor'.

j. Are there hormonal imbalances that need correcting?

k. Chronic neurotoxins may be another reason for lack of response to this

therapy. These toxins are low molecular weight, fat soluble toxins,

sequestered in the adipose tissues of the body. Rather than being eliminated

normally, they are reabsorbed and continue to be accumulated and circulated

in the body. They impact the nervous system, the endocrine system and the

immune system. (Patients report improvement in brain fog and ability to

concentrate when these toxins are removed.) There is a vision test available

on the net that can be taken to determine if neurotoxins are present. For

more information visit Dr. Ritchie Shoemaker's site -

www.chronicneurotoxins.com. Dr. Shoemaker has written a book on this subject

titled 'Desperation Medicine'. [Note: Not all neurotoxins respond to the

therapy developed by Dr. Shoemaker. Neurotoxins unresponsive to Dr.

Shoemaker's protocol may be helped by the protocol of Dr. Kane.

www.detoxxbook.com or www.bodybio.com

l. E. Berg, director of Hemex Laboratories in Phoenix, AZ has

discovered that a number of infections, including mycoplasmas, can trigger

the blood clotting system to become active, preventing oxygen and

antibiotics from reaching and destroying the pathogen. This is called

hypercoagulation. The Hemex Lab ISAC panel can be run to determine if this

is a problem. If this test is positive, appropriate blood thinning agents

may be prescribed. For more information go to www.hemes.com or call

1-800-999-2568. Check with your physician for non-prescription agents that

may be appropriate.

m. Consider testing for Lyme Disease which mimics so many rheumatic

diseases. Refer to Sections 1 and 18 for more information on Lyme Disease.

If a patient has been experiencing improvement on this therapy and then

notices that progress has stopped or he/she even seems to be regressing, the

information in this section will aid their doctor in determining what is

impeding that progress.

Dr. Lida Matman (now deceased), was considered the authority on stealth

pathogens, and she said there are times when a patient may plateau on a

therapy and the cause may be that there is an underlying organism that needs

a different antibiotic to eradicate, and once eradicated you can go back on

the first antibiotic and it will begin working for you again.

I hope Ran is better soon. My heart breaks when a cild has this awful

disease.

Blessings

Cooky

From: rheumatic <mailto:rheumatic%40>

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

Behalf

Of Mazik?

This is really scary for me because I have my son who is only 15 on

mino because everyone seemed to be in remission. With Cooky and Ros now ill,

are we sure this is the way to go. He has deformities in his fingers from

his scleroderma/RA/lyme and I keep wondering if I should put him on

methotrexate but everyone seemed to be doing so well on the mino that he has

been on it for almost 3 years but I really don't think he is getting better.

Sue

[Guest guest]

Cooky,

The problem is, 's labs have never been bad so it is impossible to say.

He had a skin biopsy 3 years ago which tested positive for Morphea. Now, his

fingers are curled (from RA NOT sclera) and he can not bend his wrists. I

almost wish his labs were bad so we could track his progress but the only

elevation he ever had was his ESR for inflammation and allergies. He does

have mycoplasma pneumonia and strep

Sue if had a positive strep he should be (in my opion) on some kind of

penicillin but apparently doc thinks the clindy is better.. I think (in my

opinion) if he were my child I would go for the bicillin (big) shots. I will

add the F & Q that says this. Does he get teted for strep on a regular basis?

He should be tested again for inflammation and done frequently to see if it

moves. What is he allergic to?

Again.any anti inflamatories? If he has morphea has he ever been on a series

of Clindamycin (I see he gets monthly Iv's) like for a week? Are you using

any skin med for the scleraderma?

If you massage his hands 3 times a day and use splints he may have the

possibility of using his hands again when he is in remission. Do you use

Minocin or minocycline?

I added the info on strep and some other things you may need to look into.

Testing for strep before starting this therapy is extremely important.

According to Dr. Brown and others, running the ASO titer can produce a

'false negative.' In such cases, either the Anti-DNAse B (strep) test, also

called the 'ADB' test, and/or the Streptozyme test would be better. All

strep tests can yield false negative results, so the combination of both the

ADB and the Streptozyme test may be necessary in certain patients. The

reason for this is that the ASO test measures just one streptococcal enzyme,

whereas the other strep tests measure several different streptococcal

enzymes, thereby increasing the chances of detecting patients who are

'carriers' of strep. When active streptococcus is present, even at low

levels, it must be treated.

If a patient had a history of strep, Dr. Brown would prescribe amoxicillin

or ampicillin even in the absence of a positive titer. According to

published research oral clindamycin is superior to either penicillin or

other antibiotics because clindamycin best inhibits the 'encapsulated' form

of streptococcus.

.. Were you tested for strep? If the results were positive, treatment should

be prescribed. (See Section 12.) The strep organism can be very difficult to

eradicate, so even after the titer returns to normal, the patient should be

monitored for some time for recurrence. The goal of the therapy is to remove

antigen wherever it may be found in the body in order to achieve optimum

benefit from this therapy.

h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is

necessary

Chronic neurotoxins may be another reason for lack of response to this

therapy. These toxins are low molecular weight, fat soluble toxins,

sequestered in the adipose tissues of the body. Rather than being eliminated

normally, they are reabsorbed and continue to be accumulated and circulated

in the body. They impact the nervous system, the endocrine system and the

immune system. (Patients report improvement in brain fog and ability to

concentrate when these toxins are removed.) There is a vision test available

on the net that can be taken to determine if neurotoxins are present. For

more information visit Dr. Ritchie Shoemaker's site -

www.chronicneurotoxins.com. Dr. Shoemaker has written a book on this subject

titled 'Desperation Medicine'. [Note: Not all neurotoxins respond to the

therapy developed by Dr. Shoemaker. Neurotoxins unresponsive to Dr.

Shoemaker's protocol may be helped by the protocol of Dr. Kane.

www.detoxxbook.com or www.bodybio.com

l. E. Berg, director of Hemex Laboratories in Phoenix, AZ has

discovered that a number of infections, including mycoplasmas, can trigger

the blood clotting system to become active, preventing oxygen and

antibiotics from reaching and destroying the pathogen. This is called

hypercoagulation. The Hemex Lab ISAC panel can be run to determine if this

is a problem. If this test is positive, appropriate blood thinning agents

may be prescribed. For more information go to www.hemes.com or call

1-800-999-2568. Check with your physician for non-prescription agents that

may be appropriate.

m. Consider testing for Lyme Disease which mimics so many rheumatic

diseases. Refer to Sections 1 and 18 for more information on Lyme Disease.

If a patient has been experiencing improvement on this therapy and then

notices that progress has stopped or he/she even seems to be regressing, the

information in this section will aid their doctor in determining what is

impeding that progress.

[Guest guest]

I think part of the problem with ap is that people just take antibiotics

and expect to go into remission but abx alone are not enough I believe.

I went into remission on minocin alone but then didn't do anything about

diet detox and stress management. I then got very sick - severe nausea

fatigue dizziness after 3 y on ap. After having learned from Ethel on

this list, I overhauled my diet : paleo diet, I only eat organic whole

foods and eliminated bad fats like vegetable oils and use coconut oil,

olive oil, butter, animal fats. I rarely eat out. The only sweetener I

ever use is stevia and occasionally small amounts of honey. I take in

lots of home made chicken broth. I only drink filtered RO water. I take

good quality probiotics. I detox using colon cleansers, parasite

cleanses, epsom salt baths, saunas. I need to do some mercury detox.

I've had my amalgams removed. I try to keep my stress levels down and

make sure I get fun in my days. This may sound silly but my life was

very stressful when I got sick and I think this was a big part of it. I

tried methotrexate and enbrel years ago and neither did anything for me.

In fact I felt worse.

I hth someone

This is really scary for me because I have my son who is only 15 on

mino because everyone seemed to be in remission. With Cooky and Ros now ill,

are we sure this is the way to go. He has deformities in his fingers from

his scleroderma/

RA/lyme and I keep wondering if I should put him on

methotrexate but everyone seemed to be doing so well on the mino that he has

been on it for almost 3 years but I really don't think he is getting better.

Sue

[Guest guest]

This message is for SUE. Have you used oral or iv clindamycin on to

kick start him? You are dealing with a far more difficult thing with

scleroderma. I did iv clindamycin for years along WITH minocin and then went

just to the minocin. When I had some symptoms in my body - after so many,

many years, you learn when the body is talking with you - I decided to go on

oral clindamycin for awhile. Symptoms are gone and tests remain great. I

would definitely look into this. And yes, with a child, keeping him on

this diet is difficult in this society, but I would still do it letting him

have a fun TREAT every now and then. When I used to travel from Montana to

Texas for IV treatments for those many years, I would give myself an ice

cream or a BAD TO THE BONES SOY DECAF ICED MOCHA. It let me be good most of

the time but allowed myself permission to be " in the world " and not feel so

deprived. I wish you and your Son all the best in the world. - SD

STILL in remission and I really am beginning to say CURED.

In a message dated 3/14/2011 5:17:21 P.M. Mountain Daylight Time,

moniquesauve@... writes:

I think part of the problem with ap is that people just take antibiotics

and expect to go into remission but abx alone are not enough I believe.

I went into remission on minocin alone but then didn't do anything about

diet detox and stress management. I then got very sick - severe nausea

fatigue dizziness after 3 y on ap. After having learned from Ethel on

this list, I overhauled my diet : paleo diet, I only eat organic whole

foods and eliminated bad fats like vegetable oils and use coconut oil,

olive oil, butter, animal fats. I rarely eat out. The only sweetener I

ever use is stevia and occasionally small amounts of honey. I take in

lots of home made chicken broth. I only drink filtered RO water. I take

good quality probiotics. I detox using colon cleansers, parasite

cleanses, epsom salt baths, saunas. I need to do some mercury detox.

I've had my amalgams removed. I try to keep my stress levels down and

make sure I get fun in my days. This may sound silly but my life was

very stressful when I got sick and I think this was a big part of it. I

tried methotrexate and enbrel years ago and neither did anything for me.

In fact I felt worse.

I hth someone

This is really scary for me because I have my son who is only 15 on

mino because everyone seemed to be in remission. With Cooky and Ros now

ill,

are we sure this is the way to go. He has deformities in his fingers from

his scleroderma/

RA/lyme and I keep wondering if I should put him on

methotrexate but everyone seemed to be doing so well on the mino that he

has

been on it for almost 3 years but I really don't think he is getting

better.

Sue

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