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le,

I hope things improve quickly for Issabella. It often takes a while for the

medication to kick in and do the job it is intended to do. Also it often takes

trying more then one medication before they find one that works. Unfortunatly it

seems that the doctors often want to wait up to six weeks or longer before they

determine that one med is not working. The fact that you have to change doctors

after just getting the diagnosis may not help much either. Be sure to take all

your records with you and try to schedule an appointment now for when you will

get moved. Don't wait til you get moved and settled to try and call to fnd a

rheumy. I don't know how it works in the military but assume that you have to

use only military doctors unless they do not offer what you need. So I will pray

that the military will have a good one for you in Georgia. If not, then you need

to talk to Robbin on this list and she will probably have more information for

you then you really want. I also have no clue how close Augusta is to Atlanta. I

dont have a map handy to look at and have only been to Georgia once. But Robbin

is in the Atlanta area and she is always very eager to help anyone.? I am sure

you will see a post from her since you mentioned that you are moving to Georgia.

You will have to be patient as you travel this road with JRA. But you will also

have to be very determined and stubborn to get what you need for your daughter.?

Good luck.

Veri & Jaye 14 poly

New Here

Hi everyone! My name is le and I am a mom to a 22 month old

daughter. Her name is Isabella Leilani and she was diagnosed with JRA

in July. It sure has been a frustrating road coming as when we first

wanted to know what was wrong with Isabellas walking and bent stiff

leg. The doctors at Tripler Army Medical center did blood

work,ultrasounds and xrays only to say there was nothing wrong with

her. I know this wasnt so .... So I made the decision to move home to

San with ISabella to take her to the Army hospitals here. She

was diagnosed with JRA. Her diagnoses is still some what new and all

I know is that she has it. I dont know any information really and the

doctors dont seem in a rush to see her more often. Isabella is going

to physical therapy twice a week. In the beginning it was going great

and we have seen a 50% improvement from the beginning. Unfortunatly

now that it is geting cold she is not compliant at physical therapy

which is frustrating to hear her screaming bloody murder due to the

pain.

She does take naproxin twice a day but it doesnt seem to be helping

with the pain. We had an appt on the 30th of this month but I called

today to see if we can get in sooner and we can on thursday. I hope

to find out more information through this group and my doctor. This

will be the second and last time we will visit with this

rhuematologist as we are pcsing to Augusta Georgia at the end of

November. I have rambled enough!:)

I am a full time mom, student, wife and best friend! Life is hectic!

*laughs*....

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Hi , I have a son, 19 yrs, who was diagnosed in 8th grade with

HFA/Aspergers. He is a twin, not identical. The twin is " typical. "

Your note reminded me of my Aspie some. Now he did, with twin, begin

to speak around average time but they never developed the speech

well. They were " pointers " , preferring to point to things, etc. I

had an older child, almost 4 when they were born, who was " typical "

too and he had attended childcare from 8 weeks old and

progressed " normally. " With the twins, my mom kept them while I

worked (I left their dad when they were 2 months old). Anyway, my

Aspie () always seemed to be a couple months behind his twin

in developing skills like sitting up, crawling, beginning to climb,

etc. As he got older, he did seem to have motor skill problems.

Unlike you, I didn't know about things like early intervention

services, etc. To shorten this a bit, LOL, neither twin seemed to

want to begin to progress in talking until they were around 3 yrs.

And then their " articulation " wasn't good, but I had been that way

also and had had speech therapy, so figured it was just " in the

family. " Really, no one could understand either of them, I called

their speech " jibber-jabber. " My mom said my dad apparently didn't

speak until around age 3 either.

So - elementary school. really behind in motor skills, the

fine and gross ones. Very smart kid though, did well at all the

learning. Had done well at home with learning too, just seemed

behind in other ways. I never could " put my finger on it " but he

just seemed " off " in some ways.

Later on as I learned of Aspergers and the more " mild " type autism, I

used to think occasionally that had some of the " traits " but

probably not enough for a diagnosis.

It seemed to stand out more in middle school to me, all the daily-

living type skills he still seemed to lag behind in although he

excelled at school. (not socially though, just in grades/learning)

This could get really long, LOL, he's 19, but fast-forward: he began

to gain much more ground in high school, even socially, although he

never had friends to hang out with outside school. Now he's in his

2nd year of college, still plans a career in medical research (has

almost always said he wanted to be a scientist). He is treasurer of

both the Science Club and the Student Government Association at his

community college and plans to transfer to a university next year.

There are still " problems " in areas, like I do worry about his

getting his driver's license, I think he would do okay in our small

type city, but never a larger one and I don't plan for him to drive

back/forth to university (will try for his license soon). He doesn't

seem to have initiative to do the everyday needed tasks (e.g.,

cleaning, laundry...) so I wonder about what will he do at college??

And I wonder about initiative/ability to be on his own later, after

college. So there are still a few things I worry about but overall

he is doing fine but I don't like to underestimate him, he has

surprised me at times when I've tended to.

Know this got a little long but still so much left unsaid. I would

work on his motor skills, there are fun ways to do this too. And

work on self-help skills. But don't push too hard, frustration will

just slow them down I think. It was 3rd grade...4th? before he

learned to tie his shoes, learned to cut better with scissors, 5th

grade riding a bike (didn't do that much at all, but finally

learned).

Welcome to the group!

>

> Hi all,

>

> I thought I'd introduce myself. My name is and I have 2

> little ones with one scheduled to arrive via scheduled c-section on

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Hi le,and welcome to the group. My name is Lani, and my daughter

is 2 and has ANA+ Poly JRA. I just wanted to say hello, and hang

in there sweetie. It took so long for the doctors to get my daughters

disease under control, but she is walking now, and hasn't had a flare

or contracture in 4 months. Stick to your guns and instincts as you

have been. I pray they find the right combo for your little one. I

know how heart breaking it is to see them suffer and not be able to

move. started on Methotrexate in addition to the Naproxen a few

months back, and it has made ALL the difference. I was so scarred to

put her on such serious meds, and she wasn't even two yet. I know its

all scarry, but the meds really really help. Best wishes to you and yours,

Lani

>

> Hi everyone! My name is le and I am a mom to a 22 month old

> daughter. Her name is Isabella Leilani and she was diagnosed with JRA

> in July. It sure has been a frustrating road coming as when we first

> wanted to know what was wrong with Isabellas walking and bent stiff

> leg. The doctors at Tripler Army Medical center did blood

> work,ultrasounds and xrays only to say there was nothing wrong with

> her. I know this wasnt so .... So I made the decision to move home to

> San with ISabella to take her to the Army hospitals here. She

> was diagnosed with JRA. Her diagnoses is still some what new and all

> I know is that she has it. I dont know any information really and the

> doctors dont seem in a rush to see her more often. Isabella is going

> to physical therapy twice a week. In the beginning it was going great

> and we have seen a 50% improvement from the beginning. Unfortunatly

> now that it is geting cold she is not compliant at physical therapy

> which is frustrating to hear her screaming bloody murder due to the

> pain.

>

> She does take naproxin twice a day but it doesnt seem to be helping

> with the pain. We had an appt on the 30th of this month but I called

> today to see if we can get in sooner and we can on thursday. I hope

> to find out more information through this group and my doctor. This

> will be the second and last time we will visit with this

> rhuematologist as we are pcsing to Augusta Georgia at the end of

> November. I have rambled enough!:)

>

> I am a full time mom, student, wife and best friend! Life is hectic!

> *laughs*....

>

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  • 3 weeks later...

Welcome to the group, ! Feel free to jump in anywhere!

RoxannaYou're UniqueJust like everyone else...

( ) New here

Hi all,I thought I'd introduce myself. My name is and I have 2 little ones with one scheduled to arrive via scheduled c-section on November 24th. My oldest is 4 and his name is J.T., he has just recently been officially diagnosed on the spectrum but very high functioning. The neurologist told me that when he gets older it will be considered Aspergers. My daughter is 3 and her name is and she is a "typical" child. Most of the time people think they are twins (they are 14 months apart) but notice that J.T. is "different".I've always known that something was off when he didn't hit milestones as quickly as most other babies his age but brushed it off when everyone else told me that it was "normal" for first born boys to be a little behind. At 15 months my pediatrician recommended we go for speech therapy since he had no words, not even "Mama" or "Dadda". He also recommended we get and MRI due to his traumatic birth. The MRI came back fine and we went for private therapy to help his speech. He did not like this at all and cried and resisted therapy. Well I continued for several more weeks and when I saw that the therapist really got nowhere with him I decided to take him out. Right before he turned 2 we called Early Intervention. They came out and evaluated him and he started to receive speech, OT, and DT. We soon dropped the DT since the therapist was horrible and didn't do her job and the wait for another DT was so long. We decided to pick up more speech and OT time. I wish I could say he made great gains during this year but I didn't really notice all that much.Right before J.T. turned 3 he was evaluated for Early Childhood and qualified (that was no surprise to us). He still had no words but within the first 3 weeks of summer school (he's a late May birthday) he said "Mama" for the first time! I was thrilled. I wish I could be a fly on the wall to see what they do to get all of this out of him but I know I can't and it's probably best for me to just enjoy him coming home with all this new language and development everyday.I had been asking since he was about 1 if the pediatrician felt he could be on the spectrum. Of course I heard that he didn't see it so we'd just keep an eye on it. I should have demanded more but being a first time mom I didn't. I also asked his therapists if they saw any signs and they told me no as well. Being that I am a teacher I know that legally they can't tell you yes but they can encourage you to seek out professional opinions if they think there could be something going on. Well when it comes down to it, I asked every person that worked with J.T. whether they saw it or not. His EC teacher and therapists said that sometimes they saw it but most days they didn't. Finally, when I switched pediatricians she finally listened to my concerns and referred me to a pediatric neurologist.When we went to visit I was shocked at how fast he came to the diagnosis. Again, it wasn't a surprise but I thought they would have to do a lot of testing to get to that result. I am very pleased to have a diagnosis after feeling that there was something more than just delays but I'm still looking for more help. I'm looking for things I can do to help him get as far in life as possible. I'm concerned for next school year when he's supposed to go into kindergarten (of which I don't think he'll be ready) what's really going to happen from there. I'm looking for other things I can do in general.Well, sorry this was so long. I just thought I'd share a little of my story. I'm looking forward to getting to know you all and hearing how you are moving forward with all of this. I appreciate you taking the time to read my story.

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.2/1739 - Release Date: 10/22/2008 7:23 AM

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What kind of band did you get?

With out seing what you are talking about I cannot say... but if you EVER have a question call you ortho!

It may be normal shifting of the bones or the band may need ot be adjusted.

Jen and Luli - almost 3 years old

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New Here

Hi,

My 6 month old son just got his helmet on Monday. The adjustment

has gone well for the most part. My question is, it looks like a couple

of ridges has come up on the back of his head, is this normal? Thanks

in advance.

Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

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Hi and welcome!!!

My first guess would be that it's his cranial sutures - my son's

sutures became really noticeable after a little while in the band. He

has a DOC Band, and he also get a ridge on the top of his head where

the piece in the front comes up hold the band steady - it's pretty

obviously in the shape of the band and it comes and goes - it's just

some swelling of the skin from what his therapist told me. Nothing

serious and totally normal.

Hope this helps! Good luck to you!

Jess

Mom to Luke - 5.5 months old - 6 wks in DOC Band

Mom to JT - 2 years old - beautiful naturally round head!

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Hi--

It is hard to say without seeing it, but I do see somethins similar

with Merrick. There seems to be a ridge on the right side. I pointed

it out at his last CT appt. and was told that it was very normal to

have that bump and then flatness especially because it is where his

helmet comes together. She said its similar to when we wear our

wedding ring..how when it comes off there is a bump and the flatness.

She said that it will for sure go away after he is out of the band.

She said that it may take a week or it may take a month but that they

have never had anyone come back and say that it never went away.

H.

>

> What kind of band did you get?

> With out seing what you are talking about I cannot say... but if

you EVER have a question call you ortho!

> It may be normal shifting of the bones or the band may need ot be

adjusted.

>

>

> ?Jen and Luli - almost 3 years old

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

>

> New Here

>

>

>

>

>

>

> Hi,

>

> My 6 month old son just got his helmet on Monday. The adjustment

> has gone well for the most part. My question is, it looks like a

couple

> of ridges has come up on the back of his head, is this normal?

Thanks

> in advance.

>

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My son had the same ridge, between the velcro closure of his band,

and it has gone away since graduating. I think it took about a month

and a half or so.

Jake-2 (DOCBand Grad 9/19/08)

Jordan-4.5

> >

> > What kind of band did you get?

> > With out seing what you are talking about I cannot say... but if

> you EVER have a question call you ortho!

> > It may be normal shifting of the bones or the band may need ot

be

> adjusted.

> >

> >

> > ?Jen and Luli - almost 3 years old

> > Left tort - Right Plagio - Hanger Band Grad - CA

> > http://www.babiesonline.com/babies/j/jens5th/

> >

> >

> > New Here

> >

> >

> >

> >

> >

> >

> > Hi,

> >

> > My 6 month old son just got his helmet on Monday. The adjustment

> > has gone well for the most part. My question is, it looks like a

> couple

> > of ridges has come up on the back of his head, is this normal?

> Thanks

> > in advance.

> >

>

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Welcome ,

I'm new here too. My daughter Jemma is also 13. She has some type of

arthritis affecting her fingers, probably psoriatic. She has psoriasis

as well. Just this week I found out she has hypothyroidism and

Sjogren's. I think all these autoimmune diseases often come together.

It is so hard when it happens to your child. I will keep you in my

thoughts and prayers today.

Ruth in TN

>

> Hi all my name is and I live in Ontario Canada

>

> My daughter Meghan is heading to the Dr today. Her eyes are so sore she

> has hives ( she has excema a psorisis) her joints are killing her.

> Especially where has had a previous injury. Her knee and wrist though

> she says she is very sore. She missed school Monday.

>

> My friend and nurse talked to another nurse and said get her into the

> Dr. I have a list of blood tests that should be done.

>

> Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

> disease. I so hope she does not have a type of Arthritis but it sure

> makes sense if she does.

>

> SIGH why does it rain and pour on one child all the time.

>

> Thanks

>

>

>

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Hi, . Welcome to the group. I am sorry to hear of your daughter's

struggles. I understand totally about it raining on one child. My son

(like many here) has multiple diagnoses- allergies, asthma, and the

arthritis.

There is a lot of info here. Please update us on your daughter when you

can, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of

Sent: Wednesday, November 26, 2008 9:56 AM

Subject: New Here

Hi all my name is and I live in Ontario Canada

My daughter Meghan is heading to the Dr today. Her eyes are so sore she

has hives ( she has excema a psorisis) her joints are killing her.

Especially where has had a previous injury. Her knee and wrist though

she says she is very sore. She missed school Monday.

My friend and nurse talked to another nurse and said get her into the

Dr. I have a list of blood tests that should be done.

Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

disease. I so hope she does not have a type of Arthritis but it sure

makes sense if she does.

SIGH why does it rain and pour on one child all the time.

Thanks

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So sorry to hear about Meghan. Hang in there. My name is . I have the

website www.kidswitharthritis.com. Take a look maybe some good information for

you. Can you please e-mail list of blood tests that should be done. I want to

talk more about blood tests on my site plus offer something in the future to

familys that do not have insurance.  My e-mail is coachrt@...

Thank you

________________________________

From: " Tepper, Michele " <MTepper@...>

Sent: Friday, November 28, 2008 9:43:54 AM

Subject: RE: New Here

Hi, . Welcome to the group. I am sorry to hear of your daughter's

struggles. I understand totally about it raining on one child. My son

(like many here) has multiple diagnoses- allergies, asthma, and the

arthritis.

There is a lot of info here. Please update us on your daughter when you

can, Michele ( 21, spondy)

____________ _________ _________ __

From: @group s.com [mailto: @group s.com] On

Behalf Of

Sent: Wednesday, November 26, 2008 9:56 AM

@group s.com

Subject: New Here

Hi all my name is and I live in Ontario Canada

My daughter Meghan is heading to the Dr today. Her eyes are so sore she

has hives ( she has excema a psorisis) her joints are killing her.

Especially where has had a previous injury. Her knee and wrist though

she says she is very sore. She missed school Monday.

My friend and nurse talked to another nurse and said get her into the

Dr. I have a list of blood tests that should be done.

Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye

disease. I so hope she does not have a type of Arthritis but it sure

makes sense if she does.

SIGH why does it rain and pour on one child all the time.

Thanks

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  • 3 weeks later...

,

Welcome! I recall that there is someone out there who treated their

Polychondritis with antibiotics. I think if you google Dr. Trentham,

who is a specialist in this treatment, eventually you will come across the

account of a patient with RP who treated herself with antibiotics and called

Dr. Trentham to tell him of her success. I remember reading it in the past.

Hope this helps. I have had enormous success with the antibiotic treatment

for my own illness after coming across this information online- and my

doctors all told me there was no hope of recovery. I am such a believer! I

was spared all of the immunosuppressant drugs and only use this. Wish you

the best of the luck! Feel free to keep asking questions if you decide to

try this treatment. This group literally saved my life.

Emma

On Fri, Dec 19, 2008 at 12:18 PM, rbblk <spartacus1_1@...> wrote:

> Hi all,

>

> My name is and I was diagnosed with a rare autoimmune disease

> called Relapsing Polychondritis (RP) about one year ago. I'm currently

> on 15mg/week of Methotraxate and recently stumbled upon information

> linking autoimmune disease to intra-cell bacteria. This has given me a

> new ray of hope as I'm not crazy about taking Metho.

>

> I have so many question along with some healthy skepticism, I'm not

> sure where to start. Is there anyone here with RP and has AP helped you?

>

>

>

>

>

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Hi , There are so many people on this site and on the Roadback.org site

that will testify that they got better with antibiotics.  Those toxic drugs will

kill you.  I no longer believe people who have any of these so-called autoimmune

diseases should be seeing Rheumatologists. I no longer call these diseases

autoimmune because they should be called (Infectious diseases) instead. I

changed from a Rheumy to an " Infectious Disease Doctor " and he understands why I

chose antibiotics.  I don't have to teach him anything or argue about why I

won't take steroids and the like.  This is a great weight off my shoulders. He

ordered all the right labs right off without question.  I am positive for

micoplasma pneumonae and for Ebstein Barr Virus.  So, I fight it all of with

Minocin, Azythromycin, Clindamycin and Benicar.  It's a long trip, but I have

lots of patience and now with this doc, I can relax knowing my antibiotics can

be ordered easily without

having to get special permission from any insurance company. If any of you are

not only fighting your disease, but also fighting your Rheumatologist, find an

" Infectious Disease Doctor " .  I didn't even know there were specialists in this

category.  Ironically, it was a Rheumatologist who told me he believed me, but

his hands were tied and he was unable to treat me.  It was he who steered me to

the " Infectious Disease Doctor " and on the way out, he said, " I hope you prove

me wrong " and get well.  I feel sorry for Rheumies who must keep on treating

with steroids because this is what they were taught in school and they must

follow protocol.  They are at least 50-60 years behind.  Antibiotic Protocol has

gotten a bad rap from them.  I think they fight it because if they can't treat

with Steroids, they will be out of a job.  And the Pharmaceutical companies who

make Enbrel, Remicade, Prednisone, Methotrexate and the likes would go out of

business. 

It's a shame that our health care system is in it for the money instead of for

the health of the nation.  No wonder, we are in the mess we are in.  Let's hope

this New Year, we will have the breakthrough we have been looking for.  There is

no doubt in my mind that antibiotics is the only way to go.  Happy Holidays to

all, Dolores & Mike

> Hi all,

>

> My name is and I was diagnosed with a rare autoimmune disease

> called Relapsing Polychondritis (RP) about one year ago. I'm currently

> on 15mg/week of Methotraxate and recently stumbled upon information

> linking autoimmune disease to intra-cell bacteria. This has given me a

> new ray of hope as I'm not crazy about taking Metho.

>

> I have so many question along with some healthy skepticism, I'm not

> sure where to start. Is there anyone here with RP and has AP helped you?

>

>

>

>

>

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Dolores,

To look for an Infectious Disease specialist instead of a Rheumatologist is

a great idea. Overall, Rheumatologists have not only not been helpful to

us, but even detrimental. I just have been dealing with a naturopath and

family doc who are prescribing abx for me, but I have " just " RA, kept well

in check with AP, whereas many people on this list have complicated

illnesses that need more medical care. Good suggestion!

Take care,

Ute

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Mike, Delores, and Emma,

Thanks for all your thoughts. I've ordered the " New Arthritis

Breakthrough " which will hopefully answer some more of my questions.

Is the theory behind all this that ALL autoimmune diseases are really

just infectious, OR that some infectious diseases mimic autoimmune

disease? For instance, I know that Lyme disease it the great

mimicker. If it is the latter, than it seems like having a full panel

of testing would be very important, otherwise AP could be useless. If

the former, than this raised my skepticism a little more because it

wouldn't explain why a stem cell transplant which effectively

replaces one's immune system will put a patient into remission, or

why T-cell vaccines work.

Anyway, maybe it's not important and if AP works even if the exact

mechanism is not known it really doesn't matter.

I'm so exhausted with study in the past year. One thing I've learned

is that you have to be your own advocate...and I realize that. But,

quite frankly from what I've read so far it seems like AP is much

more complicated—if you want to do it right—than traditional

treatments because there are a whole spectrum of diseases that one

needs to be tested for and then treated with the appropriately ABXs

and dosages accordingly. Are there Doctors out there that I can trust

to leave this all to them without having to spoon feed them and

double check everything? I've heard some good things about Dr. Franco

in CA.

Am I making this out to be more complicated than it is, or do you all

just get on Minocin without any specific infectious disease and

microplasma testing?

Thanks for your help and patience with me.

>

> > Hi all,

> >

> > My name is and I was diagnosed with a rare autoimmune

disease

> > called Relapsing Polychondritis (RP) about one year ago. I'm

currently

> > on 15mg/week of Methotraxate and recently stumbled upon

information

> > linking autoimmune disease to intra-cell bacteria. This has given

me a

> > new ray of hope as I'm not crazy about taking Metho.

> >

> > I have so many question along with some healthy skepticism, I'm

not

> > sure where to start. Is there anyone here with RP and has AP

helped you?

> >

> >

> >

> >

> >

>

>

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Hi ,

not everyone is on Minocyn. I am taking Biaxin do to the problem I had with the

sinus, I am now on both Minocyn and Biaxin, alternating days, per my doctors

recommendation. I have a doctor here in Texas, but as Dolores already said, you

may want to find an infectious disease doctor and see if he could help you. Most

of us are open to help where we can get it.

Stay well,

Eva

From: rbblk <spartacus1_1@...>

Subject: rheumatic Re: New Here

rheumatic

Date: Saturday, December 20, 2008, 1:58 PM

Mike, Delores, and Emma,

Thanks for all your thoughts. I've ordered the " New Arthritis

Breakthrough " which will hopefully answer some more of my questions.

Is the theory behind all this that ALL autoimmune diseases are really

just infectious, OR that some infectious diseases mimic autoimmune

disease? For instance, I know that Lyme disease it the great

mimicker. If it is the latter, than it seems like having a full panel

of testing would be very important, otherwise AP could be useless. If

the former, than this raised my skepticism a little more because it

wouldn't explain why a stem cell transplant which effectively

replaces one's immune system will put a patient into remission, or

why T-cell vaccines work.

Anyway, maybe it's not important and if AP works even if the exact

mechanism is not known it really doesn't matter.

I'm so exhausted with study in the past year. One thing I've learned

is that you have to be your own advocate...and I realize that. But,

quite frankly from what I've read so far it seems like AP is much

more complicated—if you want to do it right—than traditional

treatments because there are a whole spectrum of diseases that one

needs to be tested for and then treated with the appropriately ABXs

and dosages accordingly. Are there Doctors out there that I can trust

to leave this all to them without having to spoon feed them and

double check everything? I've heard some good things about Dr. Franco

in CA.

Am I making this out to be more complicated than it is, or do you all

just get on Minocin without any specific infectious disease and

microplasma testing?

Thanks for your help and patience with me.

>

> > Hi all,

> >

> > My name is and I was diagnosed with a rare autoimmune

disease

> > called Relapsing Polychondritis (RP) about one year ago. I'm

currently

> > on 15mg/week of Methotraxate and recently stumbled upon

information

> > linking autoimmune disease to intra-cell bacteria. This has given

me a

> > new ray of hope as I'm not crazy about taking Metho.

> >

> > I have so many question along with some healthy skepticism, I'm

not

> > sure where to start. Is there anyone here with RP and has AP

helped you?

> >

> >

> >

> >

> >

>

>

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Emma,

BTW, I think the person you're thinking of is Connie H. I had emailed her but it

bounced

Hope she is OK.

> >

> > > Hi all,

> > >

> > > My name is and I was diagnosed with a rare autoimmune

> disease

> > > called Relapsing Polychondritis (RP) about one year ago. I'm

> currently

> > > on 15mg/week of Methotraxate and recently stumbled upon

> information

> > > linking autoimmune disease to intra-cell bacteria. This has given

> me a

> > > new ray of hope as I'm not crazy about taking Metho.

> > >

> > > I have so many question along with some healthy skepticism, I'm

> not

> > > sure where to start. Is there anyone here with RP and has AP

> helped you?

> > >

> > >

> > >

> > >

> > >

> >

> >

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Share on other sites

I need to disagree. Maybe I am just lucky, but I go to a top rheumatologist in

NYC, and he tried me on the antibiotics. When he saw how amazing my reaction to

them was, he kept me on them. When the doxycycline stopped working for me, I had

no problems having him prescribe minocycline. At first he had tried me on the

usual rheumie drugs, but he was definitely open to other things, when they

didn't work for me.

I have now started the l-lysine treatment that I read about on this website

(thanks Soheila). I do really well now with my reactive arthritis, except for

when the rain or snow comes in, and then I'm in so much more pain, and I am also

so much more tired. I'm hoping that the l-lysine will take care of that.

I had experience with a infectious disease doctor that my rheumie sent me to at

the beginning of this illness, but he wanted to have nothing to do with me. This

wasn't my first bad experience with I.D.'s. I don't have much respect for them.

Mona

rheumatic Re: New Here

Emma,

BTW, I think the person you're thinking of is Connie H. I had emailed her but

it bounced

Hope she is OK.

> >

> > > Hi all,

> > >

> > > My name is and I was diagnosed with a rare autoimmune

> disease

> > > called Relapsing Polychondritis (RP) about one year ago. I'm

> currently

> > > on 15mg/week of Methotraxate and recently stumbled upon

> information

> > > linking autoimmune disease to intra-cell bacteria. This has given

> me a

> > > new ray of hope as I'm not crazy about taking Metho.

> > >

> > > I have so many question along with some healthy skepticism, I'm

> not

> > > sure where to start. Is there anyone here with RP and has AP

> helped you?

> > >

> > >

> > >

> > >

> > >

> >

> >

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Hi Mona, Yes, you are very lucky that you have found a Rheumy that will work

with you.  My experience has been that, except for a few handful of Rheumy's

around the country, most want to treat with steroids and such toxic meds.  I

have met so many blind sided ones that I do welcome the Infectious medical

doctor who is not giving me a difficult time.  I also went to that same doc in

NY, only he treated me at his private office in NJ because he said he couldn't

treat me with antibiotics at the NY Hospital for Special Surgery where he works

with some patients who because of Insurance must see him in NY on Wednesdays

only.  The doctors that run the Rheumatology dept at that hospital did give me a

very hard time at all the meetings I went to.  I thought I was going to have to

fight the world when I had to move twice this past year.  When I found an

agreeable doctor, I was and am so very thankful.  If you notice, I asked at the

beginning of my post

that if people were tired of fighting with their Rheumy for A/P, they should

try to get their antibiotics thru an infectious disease doctor.  It is just so

much easier.  But if they have a compliant doctor, well they have it made.  You

are one of the lucky ones.  I was too, when I first went to Dr. Trentham in

Boston who started me on the Minocin.  I did extrememly well.  But 18 months

later, when I decided to go on MP is when I ran into problems trying to find a

compliant Rheumy who would do MP.  Dr. Whittman said he would manage me on the

MP, but on the first visit, he changed all the dosages and meds so that it

didn't even resemble the protocol I wanted to try.  I never went back and

instead found an internist, who knew nothing about MP, but was willing to try. 

My other doctors (not rheumy's also begged me not to do MP.  But I was

determined and have been hanging by my coattails searching for compliant docs. 

Now, I am just elated with my

new doc.  I don't advise anyone to change docs unless they are struggling to

keep getting their antibiotics and be able to do the protocol of their choice. 

I don't believe that a doc is there to cure me.  I believe a doc is there as a

partner to help me cure myself.   As to the questions raised whether these

diseases are of Infectious or autoimmune origin.  Well, that is the answer that

will come in time with more research.  And it will take time because there are

so many different diseases that mimic each other.  That is why I believe there

is such controversy regarding treatment.  And I don't believe that enough

research has been done to give a positive answer one way or the other.  And to

add complications, not all people respond equally to the same protocol even with

the same disease or similar ones.  There is no proven theory yet.  We are all

experimenting.  As for me.  I am sold on antibiotics.  They have saved my life

so far. 

I am happy with my progress and I am happy with my doctor.  And finally, my

point was, if you are not happy, keep on searching. If you believe in some cure

fiercely, do not let anyone deter you from trying out the protocol. 

Experiment!  Only you know how you feel. The best to all of you, Dolores & Mike 

From: Mona Goldstein <spellers@...>

Subject: Re: rheumatic Re: New Here

rheumatic

Date: Saturday, December 20, 2008, 10:47 PM

I need to disagree. Maybe I am just lucky, but I go to a top rheumatologist in

NYC, and he tried me on the antibiotics. When he saw how amazing my reaction to

them was, he kept me on them. When the doxycycline stopped working for me, I had

no problems having him prescribe minocycline. At first he had tried me on the

usual rheumie drugs, but he was definitely open to other things, when they

didn't work for me.

I have now started the l-lysine treatment that I read about on this website

(thanks Soheila). I do really well now with my reactive arthritis, except for

when the rain or snow comes in, and then I'm in so much more pain, and I am also

so much more tired. I'm hoping that the l-lysine will take care of that.

I had experience with a infectious disease doctor that my rheumie sent me to at

the beginning of this illness, but he wanted to have nothing to do with me. This

wasn't my first bad experience with I.D.'s. I don't have much respect for them.

Mona

rheumatic Re: New Here

Emma,

BTW, I think the person you're thinking of is Connie H. I had emailed her but it

bounced

Hope she is OK.

> >

> > > Hi all,

> > >

> > > My name is and I was diagnosed with a rare autoimmune

> disease

> > > called Relapsing Polychondritis (RP) about one year ago. I'm

> currently

> > > on 15mg/week of Methotraxate and recently stumbled upon

> information

> > > linking autoimmune disease to intra-cell bacteria. This has given

> me a

> > > new ray of hope as I'm not crazy about taking Metho.

> > >

> > > I have so many question along with some healthy skepticism, I'm

> not

> > > sure where to start. Is there anyone here with RP and has AP

> helped you?

> > >

> > >

> > >

> > >

> > >

> >

> >

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Hi Eva,  This just goes to show that all we all react differently to same &

different antibiotics.  There is no one antibiotic that fits all.  Minocin,

seems to work on micoplasmas best.  But there are many Cell-wall-deficient

bacteria we carry, that we must keep experimenting  with various antibiotics

until we are able to kill off the offending organisms.  Biaxin may be great for

you and not for another.  I think we need lots of research to get to the bottom

of the problems.  It is going to take many many years before a cure is found and

then some new germs will be found and then we start again searching for a cure

for those germs.  This is a never ending battle.  All we can do is keep trying. 

My best to you all,  Dolores  

From: rbblk <spartacus1_1@...>

Subject: rheumatic Re: New Here

rheumatic

Date: Saturday, December 20, 2008, 1:58 PM

Mike, Delores, and Emma,

Thanks for all your thoughts. I've ordered the " New Arthritis

Breakthrough " which will hopefully answer some more of my questions.

Is the theory behind all this that ALL autoimmune diseases are really

just infectious, OR that some infectious diseases mimic autoimmune

disease? For instance, I know that Lyme disease it the great

mimicker. If it is the latter, than it seems like having a full panel

of testing would be very important, otherwise AP could be useless. If

the former, than this raised my skepticism a little more because it

wouldn't explain why a stem cell transplant which effectively

replaces one's immune system will put a patient into remission, or

why T-cell vaccines work.

Anyway, maybe it's not important and if AP works even if the exact

mechanism is not known it really doesn't matter.

I'm so exhausted with study in the past year. One thing I've learned

is that you have to be your own advocate...and I realize that. But,

quite frankly from what I've read so far it seems like AP is much

more complicated—if you want to do it right—than traditional

treatments because there are a whole spectrum of diseases that one

needs to be tested for and then treated with the appropriately ABXs

and dosages accordingly. Are there Doctors out there that I can trust

to leave this all to them without having to spoon feed them and

double check everything? I've heard some good things about Dr. Franco

in CA.

Am I making this out to be more complicated than it is, or do you all

just get on Minocin without any specific infectious disease and

microplasma testing?

Thanks for your help and patience with me.

>

> > Hi all,

> >

> > My name is and I was diagnosed with a rare autoimmune

disease

> > called Relapsing Polychondritis (RP) about one year ago. I'm

currently

> > on 15mg/week of Methotraxate and recently stumbled upon

information

> > linking autoimmune disease to intra-cell bacteria. This has given

me a

> > new ray of hope as I'm not crazy about taking Metho.

> >

> > I have so many question along with some healthy skepticism, I'm

not

> > sure where to start. Is there anyone here with RP and has AP

helped you?

> >

> >

> >

> >

> >

>

>

Link to comment
Share on other sites

Thanks Ute!  Except for a handful of Rheumy's across the nation, most Rheumy's

are totally against using antibiotics.  They were taught to depress the immune

system and that, to me, does not make a whole lot of sense.  How can we fight

off diseases without and immune system intact?  I just got so tired of fighting

with Rheumy's and giving them handouts on A/P which, I'm sure got tossed into

the garbage, that I was so delighted when I finally found a doc who understood

me and is willing to give me any and all antibiotics I need and who is doing the

correct blood work needed to find the offending bacteria or virus or fungus

responsible for my diseases and treat them with the best antibiotic, antiviral

or antifungal for that parasite or group of parasites.  I feel, aaaahhhhh!  At

last I can rest knowing I'm going in the right direction. I wanted to pass that

feeling on to those who are tired of struggling.  What a relief!-----My best to

you Ute. 

Thanks, Dolores 

From: Ute <nowyoga@...>

Subject: Re: rheumatic New Here

rheumatic

Date: Saturday, December 20, 2008, 1:01 PM

Dolores,

To look for an Infectious Disease specialist instead of a Rheumatologist is

a great idea. Overall, Rheumatologists have not only not been helpful to

us, but even detrimental. I just have been dealing with a naturopath and

family doc who are prescribing abx for me, but I have " just " RA, kept well

in check with AP, whereas many people on this list have complicated

illnesses that need more medical care. Good suggestion!

Take care,

Ute

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Hi Dolores,

This is what I'm struggling with. From what I read, it can take

months if not years to see results from AP. Surely people aren't

experimenting on which ABX combination to take...it could take a

lifetime to to get it right, if ever. Is there a standard set of

tests that should be done first to determine the right ABXs to fight

the right bugs?

What I meant by, " or do you all just get on Minocin without any

specific infectious disease and microplasma testing? " , was not

necessarily Minocin, but some random ABX combo. Or is there some

rhyme/reason to the specific ABXs like blood testing to help target

specific bugs. Sorry for all the questions but just trying to learn

where to go next.

> >

> > > Hi all,

> > >

> > > My name is and I was diagnosed with a rare autoimmune

> disease

> > > called Relapsing Polychondritis (RP) about one year ago. I'm

> currently

> > > on 15mg/week of Methotraxate and recently stumbled upon

> information

> > > linking autoimmune disease to intra-cell bacteria. This has

given

> me a

> > > new ray of hope as I'm not crazy about taking Metho.

> > >

> > > I have so many question along with some healthy skepticism, I'm

> not

> > > sure where to start. Is there anyone here with RP and has AP

> helped you?

> > >

> > >

> > >

> > >

> > >

> >

> >

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Hi , You ask many questions that even the doctors don't know all the

answers to.  That is why, for the most part, doctors are hesitant to give

antibiotics for long term.  I, like you, had to weigh the options in the

beginning.  My disease is basically Scleroderma.  It is a terminal illness, they

tell me.  So, when I was presented with either use steroids and toxic med, chemo

and such or try A/P.  Well, it didn't take a genius to realize that I had no

options.  I was definitely in the dying phase.  I thought about Lance Armstronag

who conquered over end stage cancer and with determination he fought back.  That

to me is a hero.  If I did nothing, I would surely die a horrible death and

fairly soon.  If I took the toxic meds, all they could promise me was that I

would be comfortable. A/P was a straw to draw to.  I chose A/P after having

read, " Scleroderma, The Proven Therapy Can Save Your Life " , by Henry Scammell. 

I looked at the title

and saw that there was no promise there.  The words stood out.  The word

Therapy told me this was just that.  " A Therapy! " " Can save your life! "   No

promise there either.  It didn't say will save your life.  It said Can. Either

way, I was doomed.  I had nothing to lose.  Since that was the case, I took the

plunge and went for the antibiotics.  I don't know what others do.  As for me, I

have never looked back.  Like I said before, I went from totally bedridden to

totally functional.  This life does not come with guarantees.  Some day we will

all die from something.  It is the quality of life that counts.  I believe as

Dr. Franco believes that people should go for testing first before starting the

antibiotics.  At the time I chose, I hadn't heard about Dr. Franco nor read his

writings.  However, I did finally get tested and yes, for sure, there it was.  I

had micoplasma pneumonae and Epstein Barr.  I may have others still and every

day, we can become reinfected with something else.  That is why I chose to do

the Marshall.  I will start adding my third antibiotic soon and go into Phase

3.  The way I see it, this is a fight for lifetime.  I am buying time and living

better with antibiotics than I would have been without.  As more and more info

comes in, I am open to other protocols and will keep on fighting. I'm not

counting time.  We have little control of our births and death dates.  Quality

is what matters to me.  Not all your questions have answers that I know of. 

Just research your disease and go with what your body tells you.  If you are on

antibiotics and have not seen any progress then, after giving it at least 6

months to a years trial, then keep on researching, keep on being tested and keep

on trying for an antibiotic that will work for you.  Whatever you do, do not

take anything to suppress your immune system.  You need that up and working well

in order to

fight back.  Then add, nutrition, exercise, no smoking, no drinking and a

healthy lifestyle.  Get lots of rest and keep a good mental attitude.  Make

friends and give to others the knowledge you have learned and share your story

so others can also benefit.  You are doing the right thing by posting on this

site.  Find a site for your specific disease.  Also remember, Some doctors label

you without testing and the (disease label) may just not be totally correct or

you may have overlapping diseases.  That is not unusual.  It is a long hard

journey.  So, my best to you and your search.  Keep posting and sharing. 

Dolores & Mike    

From: rbblk <spartacus1_1@...>

Subject: rheumatic Re: New Here

rheumatic

Date: Sunday, December 21, 2008, 2:53 PM

Hi Dolores,

This is what I'm struggling with. From what I read, it can take

months if not years to see results from AP. Surely people aren't

experimenting on which ABX combination to take...it could take a

lifetime to to get it right, if ever. Is there a standard set of

tests that should be done first to determine the right ABXs to fight

the right bugs?

What I meant by, " or do you all just get on Minocin without any

specific infectious disease and microplasma testing? " , was not

necessarily Minocin, but some random ABX combo. Or is there some

rhyme/reason to the specific ABXs like blood testing to help target

specific bugs. Sorry for all the questions but just trying to learn

where to go next.

> >

> > > Hi all,

> > >

> > > My name is and I was diagnosed with a rare autoimmune

> disease

> > > called Relapsing Polychondritis (RP) about one year ago. I'm

> currently

> > > on 15mg/week of Methotraxate and recently stumbled upon

> information

> > > linking autoimmune disease to intra-cell bacteria. This has

given

> me a

> > > new ray of hope as I'm not crazy about taking Metho.

> > >

> > > I have so many question along with some healthy skepticism, I'm

> not

> > > sure where to start. Is there anyone here with RP and has AP

> helped you?

> > >

> > >

> > >

> > >

> > >

> >

> >

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