To Dolores

[Guest guest]

Hi Dolores

I always read the ingredients on drugs and foods.even

before I got sick. As a chemist I have been aware of

many chemical preservatives and inactive ingredients

like binders , adhesives and other chemicals in foods

and drugs.

I bought a bottle of Ibuprofen from CVS drug store

last night. The starch used in Ibuprofen is corn.

How is your cold? take care of your lung as much as

you can. You know you shouldn't go to public places

and specially kids schools. there is lots of viruses

around. I have to take public transpotation to commute

otherwise I would stay from bus and train. you can get

virus easily from other people.

I wish you and mike a very happy new year.

soheila

--- mike rosner <martysfolks2004@...> wrote:

> Hi Soheila! Wow! I never would have thought of

> reading the ingredients on a bottle of Ibuprophen!

> When you find out, let Lynne know. She has Celiac

> disease and some of the

> other may also. Good work. You really are a good

> scientist! Happy New Year. Dolores

>

> soheila A <soadl80@...> wrote:

> Hello Group

>

> I have SD and celiac disease. I have to take

> Ibuprofen

> for pain but I noticed one of the ingredients is

> sodium starch glycolate. There is no any information

> about the source of starch that can be wheat ,corn ,

> rich or potato.

> Does anybody know how can I buy gluten-free

> Ibuprofen?

>

> thank you

> soheila

>

>

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> [Non-text portions of this message have been

> removed]

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[Guest guest]

Hi Sohelia, That is so sweet of you to ask? I always trusted the medicines

thinking that they were automatically good for me or the Doctor would not have

prescribed it. When I came down with Scleroderma, I've learned so much and this

is just one more lesson I've learned from you. Thank you. How are you doing on

the pelleted Minocin? My next appointment with Dr. T is in June. My cold seems

to get better and worse and better and worse. It's hanging on, but hopefully by

next week I can say, " What cold? " Happy New Year. May the year 2008 be

great!~~~~Love, Dodo & Mike

soheila A <soadl80@...> wrote: Hi Dolores

I always read the ingredients on drugs and foods.even

before I got sick. As a chemist I have been aware of

many chemical preservatives and inactive ingredients

like binders , adhesives and other chemicals in foods

and drugs.

I bought a bottle of Ibuprofen from CVS drug store

last night. The starch used in Ibuprofen is corn.

How is your cold? take care of your lung as much as

you can. You know you shouldn't go to public places

and specially kids schools. there is lots of viruses

around. I have to take public transpotation to commute

otherwise I would stay from bus and train. you can get

virus easily from other people.

I wish you and mike a very happy new year.

soheila

--- mike rosner <martysfolks2004@...> wrote:

> Hi Soheila! Wow! I never would have thought of

> reading the ingredients on a bottle of Ibuprophen!

> When you find out, let Lynne know. She has Celiac

> disease and some of the

> other may also. Good work. You really are a good

> scientist! Happy New Year. Dolores

>

> soheila A <soadl80@...> wrote:

> Hello Group

>

> I have SD and celiac disease. I have to take

> Ibuprofen

> for pain but I noticed one of the ingredients is

> sodium starch glycolate. There is no any information

> about the source of starch that can be wheat ,corn ,

> rich or potato.

> Does anybody know how can I buy gluten-free

> Ibuprofen?

>

> thank you

> soheila

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

---------------------------------

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[Guest guest]

Hi DOLORES

 

How are you doing? sorry that you are not feeling well. is it because of MP?

You used to be cheerful about your remission  on minocin. I didn't know that

mike has got problem too. Did he get autoimmune disease recently?

I have been on naltrexone for almost a year. It gives you more energy and

supposed to slow down the progression of the disease by boosting immune sysytem.

Let me know when you come back from visiting your doctor.

please pass my regards to Mike. I hope he feels better soon.

soheila

From: browneyes9017 <browneyes9017>

Subject: rheumatic More questions

rheumatic@grou ps.com

Date: Thursday, June 18, 2009, 7:43 AM

Hi everyone, I was also wondering if an auto-immune disease could discolor your

skin. I have a darkish color on my neck and chest with some white under my neck.

Doctor doesn't know what is causing it because my tests came back negative for

everything they tested me for. They are confused. I keep getting these what

appears to be litle black splinters in my skin now and then. I never go near any

type of wood to get splinters and also I get these (what looks like dried scab

like marks on my back(like my skin opens up like a paper cut mark would open up)

My teeth also hurt for no reason...they ache from the root...I hat eo mentioin

to you all my unusual symptoms to everyone but if I can find just one person who

may recognise this condition it would be a start for me and give me some hope

for a diagnosis.I guess I just don't want to die not knowing what made me so ill

for all these years, Sheila

[Guest guest]

Hi Sohelia,  Yes, when I was on 100mg of Minocin, twice a day only, I felt like

wonderful.  I could do anything.  But I found out that in order to get deep into

every crevice of my body, I had to add more antibiotics and pulse them.  So, I

did the MP, which made me feel worse, but I was told that this was because the

micoplasmas were dying off.  They emit a toxin as they die off.  So, that made

sense.  I am currently finishing off with MP now.  Also, last September, I took

on the care of my 95 yr. old mom with Alzheimer. This is very draining and not

very good for either Mike or myself.  She is very grouchy and demanding. Yet,

she still has all her ability to care for herself except for cooking.  Also, I

am involved with making a big move to P.R.  I leave again next Friday.  Now that

my daughter has graduated, she has offered to relieve me.  She arrives on

Tuesday.  So, we are working it out.  And it is true, all this is wearing me

down.  I have just upped the Minocin to 100mg twice a day, every other day and

Clindamycin 250mg on the odd day.  It has only been a week,  I'm doing this on

my own.  Decided to do my own experimentation with the antibiotics.  Every tenth

day, I take the Azythromycin as per MP.  Hopefully, once the hip problem is

fixed, I will feel better.  Right now, I cannot say that I am in remission.....

I was for a long time.  But all the changes has put me over the edge and I don't

feel like super-lady any longer.  Hopefully, I will get there again  I may also

be, for the first time, a bit depressed about having to take on my mom and

losing the freedom, Mike and I once had. 

 

You asked about Mike.  He got sick in 1991. It was a horrible time for us.  His

strokes left him bedridden.  It took 6 years of intense therapy to make the

wonderful comeback that he has made.  He inspires me to go on fighting.  Even

now, today, he took care of Mom all day.  I had done all the cooking yesterday. 

Today, he heated up the meals for Mom while I rested.  She can be very

demanding.  I had had an early Dr. appt. and it was over 100 degrees out there. 

Came home wasted and had no energy mentally to deal with Mom, so Mike took

over. Tomorrow will be my day to deal with her.  We take turns.  Can't wait for

my daughter to get here, so we can take off.  What I miss most is the freedom we

have lost since Mom came to live with us.  Eventually, she will have to go to a

nursing home.  I am waiting to move to the tropics.  Also don't want to put her

into a nursing home while she is still cognizant of all that is going on. 

Besides, she & the dog are inseparable.  I have to admit that I am somewhat

depressed at the confinement I am in.  Hopefully, living in the beach town on

the Island of Vieques where it is warm all year round will restore me to my

former self.  I plan to get a housekeeper when we move to do the cooking and be

a companion to mom.  I have never been depressed before this.  I am now starting

to recognize that a healthy mental state is most important for good physical

health. A positive state of mind will keep you healthy longer.  I am working

towards that goal. 

 

I also brought up the subject of Naltrexone to my doc. He said, as did the

pharmacist, that this drug is used to wean drug & alcohol users off their

habits. He said he would have to study it more as it is a controlled substance

and we will discuss it next time.  He also gave me a referal for a doc he highly

recommends in Puerto Rico.  I am going to see her when I get down there and

establish a patient-doc relationship with her.  I want to continue on A/P when

we move.  The move will most likely take place in October. 

 

Thank you for asking about Mike and myself. You are very sweet.  Hope you are

doing better also. E:mail me privately and let me know how you are doing.   Take

care, Love,  ~~~~~~Dolores & Mike 

From: browneyes9017 <browneyes9017>

Subject: rheumatic More questions

rheumatic@grou ps.com

Date: Thursday, June 18, 2009, 7:43 AM

Hi everyone, I was also wondering if an auto-immune disease could discolor your

skin. I have a darkish color on my neck and chest with some white under my neck.

Doctor doesn't know what is causing it because my tests came back negative for

everything they tested me for. They are confused. I keep getting these what

appears to be litle black splinters in my skin now and then. I never go near any

type of wood to get splinters and also I get these (what looks like dried scab

like marks on my back(like my skin opens up like a paper cut mark would open up)

My teeth also hurt for no reason...they ache from the root...I hat eo mentioin

to you all my unusual symptoms to everyone but if I can find just one person who

may recognise this condition it would be a start for me and give me some hope

for a diagnosis.I guess I just don't want to die not knowing what made me so ill

for all these years, Sheila

[Guest guest]

Dolores, your load sounds so very heavy.? I am waiting to see if I can stay in

remission, also.? Bob just had fourth surgery within two years (ca colon and

rectum) and I left his bedside in hospital in Seattle to rush to Oklahoma to ICU

for my Mother.? Docs don't think she will ever be able to live alone again and

she does not want to move to Montana - too cold for her.? It will be a journey

we are all bound on.? I hope you can find some peace again.?? Fain

rheumatic More questions

rheumatic@grou ps.com

Date: Thursday, June 18, 2009, 7:43 AM

Hi everyone, I was also wondering if an auto-immune disease could discolor your

skin. I have a darkish color on my neck and chest with some white under my neck.

Doctor doesn't know what is causing it because my tests came back negative for

everything they tested me for. They are confused. I keep getting these what

appears to be litle black splinters in my skin now and then. I never go near any

type of wood to get splinters and also I get these (what looks like dried scab

like marks on my back(like my skin opens up like a paper cut mark would open up)

My teeth also hurt for no reason...they ache from the root...I hat eo mentioin

to you all my unusual symptoms to everyone but if I can find just one person who

may recognise this condition it would be a start for me and give me some hope

for a diagnosis.I guess I just don't want to die not knowing what made me so ill

for all these years, Sheila

[Guest guest]

Thank you Judy.  I had to cancel my eye doctor appointment.  Mike, who does

not speak more than two words of Spanish, failed his driver's license test twice

because he did not exactly know what the road signs said in Spanish.  We got a

tutor to help him and he had to go back Friday morning.  At last he passed. 

Just in time too, because today, Saturday was his birthday and the date on which

his NY drivers license expired.  So, I rescheduled the eye exam for next

Friday.  We just couldn't  go in two different directions at the same

time.   Will keep you all in touch with what they find.  Meanwhile, I also

had a CT Scan of the abdomen.  It was a repeat because they found a cyst in one

of my kidneys, a fatty liver and God knows what else. We shall see.  Next

week I see my pulmonologist and see what he has to say about my CT chest exam. 

I swear, I must glow in the dark.  I've had more CT-scans and MRI's lately. 

Can't wait for this

physical to be over with and I have my Minocin back.  Take care, Dolores &

Mike   

From: Zannie <__zannie68@..._ (mailto:_zannie68@...) _

(mailto:_zannie68@..._ (mailto:zannie68@...) ) >

Subject: rheumatic Re: Antibiotic Protocol works and I have the labs to

prove it

__rheumatic _ (mailto:_rheumatic ) _

(mailto:_rheumatic _ (mailto:rheumatic ) )

Date: Wednesday, January 26, 2011, 12:31 PM

Triax still makes the brand name minocin. I just filled a prescription for

it back in 11/10. and the canadian website that has it is

www.buylowdrugs.com

Hope this helps.

SUzanne

>

> From: eson@... <eson@...>

>

> Subject: rheumatic Re: Antibiotic Protocol works and I have the labs

to prove it

>

> __rheumatic _ (mailto:_rheumatic ) _

(mailto:_rheumatic _ (mailto:rheumatic ) )

>

> Date: Sunday, January 23, 2011, 3:39 PM

>

> Â

>

> Dolores,

>

> Can't you order it from Canada? Much cheaper there!

>

>

>

>

[Guest guest]

Hi group,

FYI: just got my script del'd from Universal Drug out of Canada and it's

" Stiffel " brand, pellitized, blue and orange capsules. Just opened one to

check as I always do. I see that some are talking about the Canadian brand not

working. The Stiffel is what many of us have gotten over the yrs and this

drug store fills it. I might have missed something here, and if so, just

disregard this)

thanks,

Judy

In a message dated 2/24/2011 2:25:40 P.M. Eastern Standard Time,

cookee1@... writes:

Dolores,

I am so glad for you! I agree we have to do all the work or nothing gets

done. I hope you get back to remission soon.

Would you please tell me the number for Triax since the minocin we her

from Canada is not Triax and am wondering why so many people on the Canada

minocin have had relapses lately.

Please check into what you will be paying. If the minocin is paid for by

partD of your social security…. don’t forget that what the insurance pays

and what you pay for drug is deducted from the yearly amount Part D pays

for.

Good luck.

cooky

Subject: Re: rheumatic AP docs in NC

I guess Rheumatologists all over are afraid of losing their licenses, That

is why I went to an infectious disease doc and he was a giant help in

getting me into remission. I was bombarded with antibiotics including minocin

because there was laboratory proof that I was infected with mycoplasma

pneumonae and went into remission within 6 months after I started with him. He

used to practise in Pensacola, but last year I got notice that he moved and

that my records are still at the hospital. They did not tell me where he

moved to. But he has a friend doctor here in San . She is two hours away

so I haven't gone to her. My minocin was totally used up by Nov, 2010 and I

had to fight with the Insurance company. Changed to a different Insurance

company and the fight started all over again. I tried using generic minocin

and got worse. so, when they wouldn't give me the Minocin, I wrote my

short story of introductory and passed it to my

cardiologist, pulmonologist, neurologist and other docs, along with my

records of before and after remission. I called Dr. Trentham and with all my

labs, MRI's CT-Scans, lab results, etc. for proof, my doctors all wrote

letters to the Insurance company, The law says that if you can prove this is a

life saving medication for you, they have to approve it. Insurance opened up

an investigation and finally approved that I can and must have Minocin

(Brand Only) for the rest of my life. Then the real fight started. There was

not one pharmacy in Puerto Rico that carried it. I got all sorts of stories

including one that told me that Triax was no longer in business. I tracked

down their number and got the most wonderful person in their pharmacy dept,

who said, " of course we are still in business and making Minocin. " She

asked for the name of my pharmacy (CVS) and within 24 hours, I had my bottle

of Minocin (Brand Only in my hot little hand.)

Most of all the people I spoke to prior, were just too lazy to persue it

or didn't think it important enough.

Lesson learned: Take matters into your own hands. Your life depends on it.

Most other people don't give a damn. Now I am making arrangements for my

90 day supply to be delivered to my home forever. And a bottle of (50) 100mg

pelleted capsules, which was all they could get their hands on in short

notice only cost me $15.00. What a fight! I was losing my battle with

remission, now I have to get myself back into remission again. Will keep you

all

updated. Thank you for all the support I received from you all. This was a

story in and of itelf and will go into my book. I am now thinking about

calling up Triax to see if I coul be a sales rep for their company since no one

in Puerto Rico had heard of them. if I had my way, the entire Virgin

Islands will know about Minocin, Triax and all the diseases it helps. They will

know about the antibiotic protocol and hopefully help save a lot of lives.

BTW, I spoke with my ex-cardiologist

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

[Guest guest]

No Judy no one thinks they are not working. There are a few of us who have

relapsed or are having a big flare and I was just wondering about Triax compared

to Stiffel. I also take the Stiffel.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

Judkeels@...

Hi group,

FYI: just got my script del'd from Universal Drug out of Canada and it's

" Stiffel " brand, pellitized, blue and orange capsules. Just opened one to

check as I always do. I see that some are talking about the Canadian brand not

working. The Stiffel is what many of us have gotten over the yrs and this

drug store fills it. I might have missed something here, and if so, just

disregard this)

thanks,

Judy

[Guest guest]

From what I understood is that the Steifel pelletized ones and the Triax

pelletized ones are the same and equal to each other.  I have always used the

Triax ones and when I was told I couldn't get them because they stopped

manufacturing them, I was about to start ordering from Canada, but that would

have been so much more expensive for me as I get a discount through medicare &

my supplement insurance that covers Plan D.  so, I decided not to listen to the

stories and find out for myself.  That is why I got the number for Triax from

my old pharmacy and Bingo, I find out that they are still in business and yes

they will mail it to me in Puerto Rico.  It only cost me $15.00 for 50-100mg

pelletized pills.  so, I figure 100 pills would cost me $30.00 and that is a

huge savings. I went to bed early last night and didn't clean u my cluttered

desk, but will at some point today.  It is early morning and I just let the dog

out and am catching up with the

mail which seems to be growing and growing.  BTW, I am not shouting.  I had

to enlarge my screen

because I had lazer surgery in one eye and I still see blurry from that eye. 

But that is another story!  Take care, Dolores & Mike

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic to Dolores

rheumatic

Date: Thursday, February 24, 2011, 11:06 PM

 

No Judy no one thinks they are not working. There are a few of us who have

relapsed or are having a big flare and I was just wondering about Triax compared

to Stiffel. I also take the Stiffel.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

Judkeels@...

Hi group,

FYI: just got my script del'd from Universal Drug out of Canada and it's

" Stiffel " brand, pellitized, blue and orange capsules. Just opened one to

check as I always do. I see that some are talking about the Canadian brand not

working. The Stiffel is what many of us have gotten over the yrs and this

drug store fills it. I might have missed something here, and if so, just

disregard this)

thanks,

Judy

[Guest guest]

okay Cookie...thanks for clearing that up for me. I did miss something

there! lol

Judy

In a message dated 2/24/2011 11:07:00 P.M. Eastern Standard Time,

cookee1@... writes:

No Judy no one thinks they are not working. There are a few of us who have

relapsed or are having a big flare and I was just wondering about Triax

compared to Stiffel. I also take the Stiffel.

Cooky

From: _rheumatic _ (mailto:rheumatic )

[mailto:_rheumatic _ (mailto:rheumatic ) ] On

Behalf Of _Judkeels@..._ (mailto:Judkeels@...)

Hi group,

FYI: just got my script del'd from Universal Drug out of Canada and it's

" Stiffel " brand, pellitized, blue and orange capsules. Just opened one to

check as I always do. I see that some are talking about the Canadian brand

not

working. The Stiffel is what many of us have gotten over the yrs and this

drug store fills it. I might have missed something here, and if so, just

disregard this)

thanks,

Judy

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

[Guest guest]

You know what Dolores, I am only one of many who will remind you that against

all odds you reached remission once; you can, and there is no doubt in my mind,

you will again. The difference this time is that you have a map, you know how &

what it takes to get there.

You can do this !!!!!!!!!!!!

[Guest guest]

I SECOND THAT MOTION!

rheumatic To Dolores

You know what Dolores, I am only one of many who will remind you that against

all odds you reached remission once; you can, and there is no doubt in my mind,

you will again. The difference this time is that you have a map, you know how &

what it takes to get there.

You can do this !!!!!!!!!!!!

[Guest guest]

Hi again.  I love all the suppport.  Thank you all.  You bet I will.By summer

I expect to be back in the swing of things again.  Meanwhile I will do like the

bears and sleep away the rest of winter.  Love you all.  Dolores

From: Sltfain@... <Sltfain@...>

Subject: Re: rheumatic To Dolores

rheumatic

Date: Friday, March 11, 2011, 8:50 PM

 

I SECOND THAT MOTION!

rheumatic To Dolores

You know what Dolores, I am only one of many who will remind you that against

all odds you reached remission once; you can, and there is no doubt in my mind,

you will again. The difference this time is that you have a map, you know how &

what it takes to get there.

You can do this !!!!!!!!!!!!

[Guest guest]

I love you too, Maz and hope everything is going well for you.  R U still

teaching?  Since you are upside down from me in the under world is it getting

close to being fall for you and when does school start again. How's hubby

taking his retirement .  Did the transfer go well with the property and most

of all, How are you feeling.  so kind of you to give everyone that elimination

diet.  I've got it on the fridge with magnets.  Take care, Dolores

From: Maz <maz.aust@...>

Subject: rheumatic To Dolores

rheumatic

Date: Friday, March 11, 2011, 8:10 PM

 

You know what Dolores, I am only one of many who will remind you that against

all odds you reached remission once; you can, and there is no doubt in my mind,

you will again. The difference this time is that you have a map, you know how &

what it takes to get there.

You can do this !!!!!!!!!!!!