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Interestingly, Dave, you bring that subject up about the adrenals. I am being

tested for pheochromocytoma at this time. It is an endocrine producing tumor

which can attach itself on the adrenals or sympathetic nerve chains, distal

aorta, ureter, kidneys, bladder, brain stem and possibly on and around the

lungs. It was discovered that I have a sausage shaped ? along my ureter. It is

approximately 4 cm long and 5-6cm in diameter. It was found by and MRI done of

the abdomen looking for a pheochromocytoma on the adrenal glands. 90% of these

tumors attach themselves to the adrenal glands and the other 10% can be

attached to areas listed above. It is called the 10 percent tumor because they

do things about 10% of the time. It takes years to find these and expensive

testing. I have suffered with panic disorder to the greatest extremes since I

was a teenager. I was in and out of the ER from 14-17 years of age because

once I went half way unconscious and I felt like I was dying. Everything was

fading away. Doctors thought I was crazy and hysterical. I evaluated

psychiatrically and was never given an extreme label. It was either severe

anxiety, global hystericus (hysteria) or " this is weird and we cannot figure

it out. " They tried to do the shizophrenia thing, but I had no indications of

loose associations.

Today, at 38, my doctors in a different place, geographically, and time wise

are looking at these same symptoms of greater intensity as real medical

problems. Dave and group, I have been through hell with my health. Finally,

doctors are paying attention after discovering that I had a nickel sized hole

in my heart in 96 which had to be repaired and could explain part of my

feelings like I was dying as I had deoxygenated blood shunting back and forth

between my left and right atrium. Not alot of blood was getting through to my

body as it should. I had the hole grafted with an angel wing device through

means of catheter up the femoral vein and artery to the heart. It is

investigational and I was the 161st person in the world to recieve this

device. So far, it is doing good. Thank the Lord that it was in when my heart

rate was between 150-160 bpm. I would have had a stroke had it not been

repaired. I have had some trans ischemic strokes. Then, I was found to have a

goiter the size of a golf ball and now the endocrine producing tumor is being

explored with the sausage shape in the ureter being a good possiblity. Oh, and

I have major POD of the ovaries and whatever else comes up.

Dave, the adrenal gland is very touchy and stress can do alot. I have been

under alot of stress in my life with major events including my health. I have

felt poor for along time and yet I am blessed that I have almost completed my

MA degree in Counseling in spite of the obstacles and health issues, held down

jobs, run the family business, conduct support groups, kept up on a demanding

social life and everything else. I give the strength to God as I could not

have done that on my own.

Lastly, there is a condition called MEN Multiple Endocrine Neoplasia Type I,

IIA and IIB. If anyone is interested in this, I have information. Sometimes,

rarely, there are one to two other endocrine disorders going on. I had to jump

on the adrenal thing and I apologize for being so lengthy. This is my story

though, in short. The long version would wipe out all memory in your

computers. LOL

I thank God for my sense of humor and childlike ways. It helps to deal with

things more positively and it is better for your immune system. 's

vitamin and mineral knowledge and its effects are very important for the

healing process as well. I feel better even though there are so many things

going on. I can walk two miles at a fast pace. I love to exercise and the

vitamin and mineral program has helped alot with that. You would not believe.

Take care and the best of health to everyone.

Sincerely,

Lissa

______________________________________________________________________

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Whew! . You have really been through a lot. I hope everything can be

taken care of, and your health can be restored! Best wishes, Lori

______________________________________________________________________

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Lori:

Thanks for your concern. A positive attitude is important for recovery and

alot of faith too. Take care of yourself.

______________________________________________________________________

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,

Thank you for your note. I have to admit I'm still confused, I rushed into

RAI (I'm feeling better) but now I think I should have looked into things

before I did RAI. I was a truck driver (over the road) and had a 2 1/2 yr old

daughter and just wanted to calm down ASAP. I'm not sure if I fit into the

hyper or hypo catagory (somedays it feels like both). I will keep in touch

and take care of yourself.

Lori

______________________________________________________________________

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Lori:

You could be both hyper and hypo at the same time. It happens. Did I ask you

if you had a nodule? I wish you full recovery and the best of health. Please

keep in touch. I admire you for your profession as an over the road trucker.

The hours and sitting can certainly have challenges of its own.

Take care,

______________________________________________________________________

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Hi Gang...I am really happy that put this group together, but I'm

noticing that I can't keep up with all the email. I think we need some

guidelines on how we should send stuff...maybe in some cases, we should email

directly to the person we want to speak to. Perhaps the group should only

get questions, or comments that are appropriate to all members. Any

suggestions.

______________________________________________________________________

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Hi everyone,

I think it's important that we get all the email sent,

thats how we learn how to handle our problems, and we see how others are

doing.

I enjoy reading mail that has a great ending, i'm positive that some day we

will all get better and that there will no longer be a link to this.

lets keep all the email comming to all of us, how would we of known about

kathleen if she only told a few?

I love to see this continue as is.

thanks,

Sandy

______________________________________________________________________

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,

Back in Aug. 97 I had a goiter that is how all this was noticed (at the

Dentist) then I started pin pointing my mood swings and hot flashes. I had

thought all that was from having a hysterectomy 1 week earlier. At times I

still feel my heart racing and have been very hot all the time. My last TSH

was .002 and free3T4 was 1.75 these sound low to me after reading a few

emails. What do you think?

Thanks Lori.

______________________________________________________________________

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Hi Esther,

I agree about the amount of e-mail. I want to read it, but time is limited

as everyone's is. I am taking the time however because I don't want to

miss something that will be useful to me. Perhaps, we could use the group

to e-mail our stories, supplement trials/suggestions, etc. All other stuff

can be sent to the author. I open to suggestions.

Terry

----------

> From: DearEsther@...

> hyperthyroidismegroups

> Subject: Re: <no subject>

> Date: Tuesday, September 29, 1998 11:33 AM

>

> Hi Gang...I am really happy that put this group together, but I'm

> noticing that I can't keep up with all the email. I think we need some

> guidelines on how we should send stuff...maybe in some cases, we should

email

> directly to the person we want to speak to. Perhaps the group should

only

> get questions, or comments that are appropriate to all members. Any

> suggestions.

>

> ______________________________________________________________________

>

>

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  • 4 months later...

<no subject>Hi Guys! Metalprotienase??? Hmmmmmm! Then I wonder why the

Macrolides and Quinolones produce effective results in Rheumatic diseases? My

my my! The little boxes we ( they ) live in. ( Sarcastic , Judgemental

observation )! Hugs to all. Al R. Having another wonderful , almost

painless day on the AP.

rheumatic <no subject>

Hello Group,

I know that Arthritis Today magazine published by the Arthritis Foundation is

probably a favorite with most of you (NOT!), but in case you missed it, there

was a little blurb in their September/October '98 issue entitled Medical

Crossovers: Teaching Old Drugs New Tricks. The article states that Minocycline

" was proven by studies in the early '90s to help people whose RA had failed to

respond well to other treatments. " The story goes on to discuss a study by

O'Dell, MD at the University of Nebraska that shows " minocycline may also

be useful as a first line of defense against RA " . A three-year follow-up of

this study is cited in which the researchers learned that " those who benefited

from the drug initially and have since taken it continuously have experienced

ongoing improvement. Those who stopped have experienced flares of their

disease. " I was happy to see the Arthritis Foundation acknowledge minocyline,

but I was disappointed with their blanket statement that minocycline's " effects

on RA are believed to have less to do with its ability to kill bacteria than to

block the actions of enzymes called metaloproteinases. . . " I know that, even

among medical advocates of minocycline, there is some dispute over how the drug

actually works; it is unfortunate, but I guess it isn't surprising that Dr.

Brown's theory of mycoplasmas wasn't even mentioned.

Kari

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Hi Kari: Thanks! If the MDs. did'nt have to practice defensive medicine

so much, and were allowed to use more of their intuition, I'm sure they

would be more open to new ideas. Our medical bills would be less, for those

of us who dont have insurance. A Big Hug for you. Al R.

rheumatic <no subject>

>From: " Rominski " <skifamily@...>

>

>Hello Al,

>

>Thanks for your response on horses and antibiotics. I accidently deleted

it

>after I read it, so I can't respond specifically to all you said. You're

>certainly right, though, about how sensitive horses are to just about

>everything. I have to say, too, that I get my very best medical advise

from

>vets. I know. I know. They aren't supposed to give advise to people! My

>husband and I often wish that one of our vet buddies would become an MD,

>because he is so knowledgable about so many health issues, and he is always

>open to learning more and unafraid when his current knowledge is challenged

>by new discoveries. If only more MDs would have that attitude, I think

>medicine would advance very quickly.

>

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

>To unsubscribe from this mailing list, or to change your subscription

>to digest, go to the ONElist web site, at and

>select the User Center link from the menu bar on the left.

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  • 1 month later...
Guest guest

Kari, regarding your daughter, it is not the least bit uncommon for

Raynauds to precede these diseases. As for those negative blood tests,

20% of rheumatoid arthritis patients never do show positive on the

normal tests used to verify diagnosis of the disease.

If she were my daughter, I would waste no time getting her started on

the antibiotic protocol.

Ethel

Rominski wrote:

>

> Hello Group,

>

> I'm back on-line after a really wonderful vacation, and I wanted to

> update you on my daughter and also on my own progress and seek advice

> and guidance from all of you wise, experienced, terrific people!

>

> MY DAUGHTER: As some of you know, my 13 year old daughter saw a

> rheumatologist a few weeks ago for aches, red eyes, alternatingly

> sweating than freezing hands, etc. As I mentioned at the time, he did

> find some swelling in one ankle, and he was concerned enough to do

> some tests. I spoke with his nurse yesterday and learned that my

> daughter's tests were all normal, but the doc says she has primary

> Raynaud's and should be seen again in one month. We are all relieved

> that her tests did not indicate RA, but we are obviously concerned

> about Raynaud's and the fact that it sometimes accompanies RA. She

> continues to have pain in her fingers, knees and one ankle.

>

> QUESTION: Since my daughter is having continued joint pain and there

> is history of RA from three different family bloodlines, should we

> just wait and see what happens or should we take some further action?

>

> MYSELF: After 15 weeks on antibiotic, I am thrilled to be feeling

> better, and I sure hope that the Minocin is stopping permanent damage

> and ending this ridiculous illness. I still have a little discomfort

> in my hands, feet and knees and some true pain in my left foot and

> occassionally in one finger, but I was able to make some fairly

> intense rainforest hikes on our trip. There is no way I could have

> done that a few months ago! Also, my voice hasn't been hoarse for

> weeks, and that horrible morning stiffness where fingers and feet just

> don't work for hours is GONE! (I do still have to be somewhat

> protective of my feet, but they do work now!) My energy level has

> increased incredibly. I went to the barn with my husband this weekend

> for the first time in months, and riding didn't send me into a flare

> and wear me out completely as it had been doing.

>

> On Monday, I went back to Boston to see Dr. Trentham. My lab results

> aren't in yet, but he was very encouraged by my improvement and said

> it looks like I'm on the road toward remission. I am not 100% yet,

> but I am so much better than I was even one month ago. (And one month

> ago, I was happy to be feeling as good as I was compared to last

> Fall!) Dr. Trentham also says that it is still pretty early in the

> minocycline treatement, and I can expect to see continued improvement.

> I am anxious to see the results of my bloodwork and whether the tests

> will show any changes yet. At this point, Dr. Trentham wants me to

> see somebody locally (Minnesota) every three months and wait for one

> year to return to Boston.

>

> QUESTION: At what point does the " two steps forward " stop including

> the " one step back " ? Is there ever a time when the symptoms are " gone

> forever " , or should I just be greatful for the incredible improvement

> I've had and accept that I will flare occassionally?

>

> I have to be out-of-town on business from Sunday to Friday, so I'll

> probably temporarily unsubscribe on Saturday night, but I am anxious

> for any input from the group.

>

> Thanks and my best to all of you,

>

> Kari

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Guest guest

Everyone's different with one step forward and two back. Don't look a gift

horse in the mouth and enjoy.

As for you're daughter I would IMMEDIATELY PUT HER ON THE AP. Dr. Brown himself

said if doctors would treat people with RA at the first onset of the symptom of

fatigue he would be able to halt this disease much more effectively.

You have everything to gain and nothing to loose.

I don't want to scare you but one of my first symptoms was Raynaud's.

Donna

Ottawa, Canada

Scleroderma, Raynaud's 01/95, AP 10/97

(My Story) www.compmore.net/~donray

rheumatic <no subject>

Hello Group,

I'm back on-line after a really wonderful vacation, and I wanted to update

you on my daughter and also on my own progress and seek advice and guidance from

all of you wise, experienced, terrific people!

MY DAUGHTER: As some of you know, my 13 year old daughter saw a

rheumatologist a few weeks ago for aches, red eyes, alternatingly sweating than

freezing hands, etc. As I mentioned at the time, he did find some swelling in

one ankle, and he was concerned enough to do some tests. I spoke with his nurse

yesterday and learned that my daughter's tests were all normal, but the doc says

she has primary Raynaud's and should be seen again in one month. We are all

relieved that her tests did not indicate RA, but we are obviously concerned

about Raynaud's and the fact that it sometimes accompanies RA. She continues to

have pain in her fingers, knees and one ankle.

QUESTION: Since my daughter is having continued joint pain and there is

history of RA from three different family bloodlines, should we just wait and

see what happens or should we take some further action?

MYSELF: After 15 weeks on antibiotic, I am thrilled to be feeling better,

and I sure hope that the Minocin is stopping permanent damage and ending this

ridiculous illness. I still have a little discomfort in my hands, feet and

knees and some true pain in my left foot and occassionally in one finger, but I

was able to make some fairly intense rainforest hikes on our trip. There is no

way I could have done that a few months ago! Also, my voice hasn't been hoarse

for weeks, and that horrible morning stiffness where fingers and feet just don't

work for hours is GONE! (I do still have to be somewhat protective of my feet,

but they do work now!) My energy level has increased incredibly. I went to the

barn with my husband this weekend for the first time in months, and riding

didn't send me into a flare and wear me out completely as it had been doing.

On Monday, I went back to Boston to see Dr. Trentham. My lab results aren't

in yet, but he was very encouraged by my improvement and said it looks like I'm

on the road toward remission. I am not 100% yet, but I am so much better than I

was even one month ago. (And one month ago, I was happy to be feeling as good

as I was compared to last Fall!) Dr. Trentham also says that it is still pretty

early in the minocycline treatement, and I can expect to see continued

improvement. I am anxious to see the results of my bloodwork and whether the

tests will show any changes yet. At this point, Dr. Trentham wants me to see

somebody locally (Minnesota) every three months and wait for one year to return

to Boston.

QUESTION: At what point does the " two steps forward " stop including the

" one step back " ? Is there ever a time when the symptoms are " gone forever " , or

should I just be greatful for the incredible improvement I've had and accept

that I will flare occassionally?

I have to be out-of-town on business from Sunday to Friday, so I'll probably

temporarily unsubscribe on Saturday night, but I am anxious for any input from

the group.

Thanks and my best to all of you,

Kari

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  • 6 months later...

sorry i just read the page i sent u & yes it does, click on treatment then

under complications click arthritis u can read about it

rheumatic <no subject>

> From: " Ana D. Willson " <ana@...>

>

> Hi all, my name is Ana, and I have been diagnosed with RA this past

April.

> Have been taking

> drugs prescribed to me by my internist (celebrex - to which I'm allergic,

> arthrotec, and now Vioxx. It seems they all work for a short period of

time,

> then I have to switch to something else. Have an appointment on the 20th

of

> this month to see a doctor that was recommended in my area, that treats

> patients with rheumatoid problems, with AP. Will ask to be placed on this

> therapy - will keep you posted. My question to all out there is: does

> anybody know if there is a link between having had rheumatic fever as a

> child, and then developing RA as an adult? Thanks.

>

> >

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Don't know if there is a link but I had rheumatic fever at age about 8

and RA now. But 2 people I grew up with also rheumatic fever and no RA

Sooooo I don't know.

cooky

" Ana D. Willson " wrote:

>

> From: " Ana D. Willson " <ana@...>

>

> Hi all, my name is Ana, and I have been diagnosed with RA this past April.

> Have been taking

> drugs prescribed to me by my internist (celebrex - to which I'm allergic,

> arthrotec, and now Vioxx. It seems they all work for a short period of time,

> then I have to switch to something else. Have an appointment on the 20th of

> this month to see a doctor that was recommended in my area, that treats

> patients with rheumatoid problems, with AP. Will ask to be placed on this

> therapy - will keep you posted. My question to all out there is: does

> anybody know if there is a link between having had rheumatic fever as a

> child, and then developing RA as an adult? Thanks.

>

>

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Ana,

Interesting question. I have RA and never had rheumatic fever, however,

my mom also has RA and did have a bad case of rheumatic fever as a

child. I believe she was bed-ridden for the better part of a year. I'd

never heard of this but if there is a connection, that might explain my

mom's predisposition.

a Peden

" Ana D. Willson " wrote:

>

> From: " Ana D. Willson " <ana@...>

>

> Hi all, my name is Ana, and I have been diagnosed with RA this past April.

> Have been taking

> drugs prescribed to me by my internist (celebrex - to which I'm allergic,

> arthrotec, and now Vioxx. It seems they all work for a short period of time,

> then I have to switch to something else. Have an appointment on the 20th of

> this month to see a doctor that was recommended in my area, that treats

> patients with rheumatoid problems, with AP. Will ask to be placed on this

> therapy - will keep you posted. My question to all out there is: does

> anybody know if there is a link between having had rheumatic fever as a

> child, and then developing RA as an adult? Thanks.

>

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  • 2 months later...

I have the same problem. Lots of ads and web addresses. I keep deleting

them before I send them. There is nothing on this

but my typing...let me know if it happens again...if it does, this is part

of our ER site and I don't think we can do much about it. Anyone have the

answer?

OKC

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In a message dated 01/03/2000 4:49:03 PM Mountain Standard Time,

sparrow@... writes:

<< is there a reason i keep getting these messages with nothing in them but

ads? >>

I sent him a private message explaining that this is a health related issues

list and that I personally was not interested and was requesting that he

stop. If it doesn't work, we will have to report him to the person who is

supposed to be monitoring the list. I am surprised it has gone on this long.

The other lists I subscribe to would have hung him by now! :>)

Pam

Pamacs Selkirk Rex

Please check out my website at

http://hometown.aol.com/sharpcats/myhomepage/index.html

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  • 1 year later...
  • 6 months later...

,

You are ssssoooooo lucky to have the backing of the doctors and the school

cook!!! I can't see my school cook being anything but uncooperative and

have not even tried to talk to that person. What is this teachers problem.

Certainly there are kids that bring lunch from home? Other parents-- she

should tell them that Rebekah is on a special diet so has special food, and

leave it at that. Sound like she is afraid this might involve some extra

explaining by her and extra work.

Do keep up with the diet. I hope you are seeing some changes. Good Luck

and enjoy the holidays

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From:

>

>

> ---Hi

>Having read up on gf/cf diet I decided about 6 weeks

>ago to try Rebekah on it. In the U.K. it is quite an

>unusual thing although I immediately had the backing

>of my doctor and paediatrician. I was delighted when

>her school nurse rang to say that the school cook

>would produce her school meals in accordance to the

>diet. However her class teacher (who I feel still

>thinks I am just loopy in thinking she's autistic)has

>spent the last 2 weeks asking me if I am going to let

>her have normal food over Christmas? Making me feel

>decidedly guilty in depriving Rebekah on just another

>of my trouble making crusades!Having met with the

>school cook she had put together a menu for Rebekah

>which consisted of tuna, veg and potatoes followed by

>fruit. I pointed out that I could provide substitutes

>for practically everything her school friends were

>having(thinking of her poor face as they ate burgers

>and chocolate cake whilst she ate tuna and fruit)The

>cook agreed saying that if I sent in a months worth at

>a time she would freeze them. 2 days before starting

>the diet at school I get a letter home from Rebekah's

>teacher to say I either have the tuna diet or she'll

>have to have packed lunches otherwise all the parents

>may want the same kind of treatment and then it would

>be chaotic. I have tried to point out that I am not

>being awkward and that I am doing this for Rebekah.

>Has anyone else encountered this type of attitude?If

>so do you have any tips on how to deal with it?

>A really angry

>-mum to Rebekah 3 (u.k.)

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>>

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--- Scherbert <Scherb@...> wrote: >

Hi

thanks for that,yes we feel we are seeing an

improvement already in many areas especially the head

banging and hyperactivity. It was brought home to us

more this week as the self harm has made a comeback

and Rebekah has been given chocolate at school every

day.

Hope you and your family all have a great Christmas

and New Year.

mum to Rebekah 3(u.k.)

>

>

> ----------

> >From:

> >

> >

>

> > ---Hi

> >Having read up on gf/cf diet I decided about 6

> weeks

> >ago to try Rebekah on it. In the U.K. it is quite

> an

> >unusual thing although I immediately had the

> backing

> >of my doctor and paediatrician. I was delighted

> when

> >her school nurse rang to say that the school cook

> >would produce her school meals in accordance to the

> >diet. However her class teacher (who I feel still

> >thinks I am just loopy in thinking she's

> autistic)has

> >spent the last 2 weeks asking me if I am going to

> let

> >her have normal food over Christmas? Making me feel

> >decidedly guilty in depriving Rebekah on just

> another

> >of my trouble making crusades!Having met with the

> >school cook she had put together a menu for Rebekah

> >which consisted of tuna, veg and potatoes followed

> by

> >fruit. I pointed out that I could provide

> substitutes

> >for practically everything her school friends were

> >having(thinking of her poor face as they ate

> burgers

> >and chocolate cake whilst she ate tuna and

> fruit)The

> >cook agreed saying that if I sent in a months worth

> at

> >a time she would freeze them. 2 days before

> starting

> >the diet at school I get a letter home from

> Rebekah's

> >teacher to say I either have the tuna diet or

> she'll

> >have to have packed lunches otherwise all the

> parents

> >may want the same kind of treatment and then it

> would

> >be chaotic. I have tried to point out that I am not

> >being awkward and that I am doing this for Rebekah.

> >Has anyone else encountered this type of

> attitude?If

> >so do you have any tips on how to deal with it?

> >A really angry

> >-mum to Rebekah 3 (u.k.)

> >>

> >>

> >> [Non-text portions of this message have been

> >> removed]

> >>

> >>

> >>

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  • 3 years later...
Guest guest

I am located in Manhattan. 212-369-4138. Please call.

ce

the blessings already are.Lela <JannaLeLa@...> wrote:

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  • 1 year later...
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Hi, everyone. The plot thickens. Get this ... I was explanted on 3/10. The surgeon saw a shiny gooey spot on one of my implants so he swabs it and sends it to the lab. Turns out it’s Staph and it seems I have been contaminated since the implants were put IN! (Almost 7 years.) Could it be that all of the autoimmune symptoms we all are experiencing (tiny fevers, joint pain, neuropathy, etc. ad infinitum) are because we ALL have been contaminated during our original surgeries ... (the staph normally lives on the surface of skin and if the surgeon did not take proper care to sterilize everything or he even bumped your breast that was not properly sterilized, boom – the staph adheres to the silicone sack). I know it sounds crazy, but what if Inamed and Mentor are right and so are all of us? What if it’s the surgeon’s fault? How come all saline implants aren’t causing our symptoms for everyone? Staph (especially internally) is a serious germ. It can kill you. I am so happy I had them taken out. - Nahum

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