Autoimmune/Inflammatory Syndrome Induced by Adjuvants and Sjögren’s Syndrome

[litliwlowa]

I was STUNNED to learn this:

https://www.ima.org.il/FilesUpload/IMAJ/0/193/96905.pdf
(page 1 start last paragraph, silicone and aluminum specifically mentioned)

http://www.the-rheumatologist.org/article/asia-a-new-way-to-put-the-puzzle-together/

A couple of years ago, best I can recall, I posted a "for the ladies only? on the sensitive topic of breast implants, specifically a video concerning saline.

I have been quiet on the boards for a reason. Since my round of breast cancer, getting sicker and sicker. Finally did get my Ig's tested, Duke refused to test subclasses. I was only low on IgM, which is consistent with being asplenic.

Anyway, I have a second opinion expert immunologist who as a favor is reviewing and following my progress.

When the Ig's came back essentially normal, across my FB feed came an article titled "Breast Implants - The Ticking Time Bomb"

I asked if maybe my implants are the problem. I mean I was told 20 years ago by the PS they were totally safe and lifetime devices.

Immunologist was floored. YES, it is the implants and they MUST come out. So a year after they come out, he wants to repeat all humoral status testing, etc, as in his opinion, we cannot get an accurate result as long as these are in my body.

That is the tip of the iceberg. Numerous AI's of other "breasties" I have come in contact with in recent weeks all started after implants. Anything from thyroid, to Lupus, to scleroderma, to Sjogrens, to MS-like symptoms etc.

Once they get explanted, most make a substantial recovery. Not a complete recovery, especially if they have been in a long time. Mine are 20 years old

I only recently found out that this sjoggie here has another problem lurking in the shadows. I have not been tested yet and I have NO IDEA how my cancer surgeon could have missed it, nor how my medical oncologist missed it,

Possibility of BIA-ALCL. Late onset seroma, fluid around the implants in the scar capsule, is a big red flag that may be developing ALCL. MRI in October 2014 clearly revealed fluid around both implants in scar capsules.

What was supposed to happen, which I only recently learned, is that fluid should have been aspirated ultrasound guided and tested for CD30

We know, I think many of us, that Sjogren's alone increases our risk for lymphoma. Well, ALCL aka Anaplastic Large Cell Lymphoma, is a reportedly rare form of breast implant associated ALCL. Unfortunately for me, it is most associated to date with McGhan biocell SALINE implants subpectoral.

As of my last diagnostic mammogram, the same breast I developed cancer in, left side, something happened. It has been swollen and extremely painful ever since over a month now. I have consult with plastic surgeon Jul 26th. Prayers would be appreciated. I am given to understand she is very experienced in Explant En Bloc. That means removing implant and scar capsule together intact so as not to contaminate the chest cavity.

It is a very risky surgery, especially as subpectorals as old as mine are tend to basically end up like glued to the ribs. She may not be able to get everything out.

As a side note, all implants have silicone shells. All of them do. And the double whammy with the textured shells is as they age, those textured filaments shed and embed in tissued at the microscopic level, including lung tissue

Plus I am Praying she will order the proper tests, including but not limited to CD30, checking lymph nodes for any involvement, checking for fungi and bacterial contamination, as well as biofilm. And that Medicare WILL cover. My endo says they should.

I am posting this for two reasons.

First, what I have gotten a hefty education on in recent weeks is mind boggling. So even if only one sjoggie out there has implants, please feel free to PM me. I am still digesting a lot i have learned in recent weeks and still in shock. Also am a member of a group building fast with over 3100 members with similar stories as mine - within 2 years of implant, started getting all manner of medical problems.

Secondly, I am scared. I cannot shake this feeling in my gut that I am in trouble medically. So rather than wait until after explant, I will be making a trip to meet my new granddaughter (two months old) and her sister, now two years old and visit with my youngest daughter. Something in my gut says may that trip before explant.

As for my Sjogrens? Mostly affects my left side. Getting worse on that side.

Anyway, sorry for the novel.

I felt compelled to share this sensitive subject in case there is someone else like me with implants that keeps getting sicker.

LW

[Tharrell]

Oh my goodness Amanda! I have been wondering where you were and how you are doing! How utterly frightening for you. Strange how something pops in your head and a doctor has a light go off! Thankfully it was the right doctor! I have a strange, severley painful, burning pain in my chest everytime I wake up and also when I get a bad hot flash. It doesn't feel like heartburn, but the pain is so severe I don't want to wake up at all. I mentioned it to several doctors, but they may have been the wrong ones, because I get the look like I'm a complete idiot so I stopped mentioning it. All I know is that xrays and ct scans have been normal, done for other reasons, so I'm hoping that eventually whatever I get treated for will make it go away.
I don't have implants, at times I thought to get them, but then I remember they are a bad idea when having autoimmune diseases.
I will check out your links!
And please don't hope the doctor will do the test, ask to make sure!
I'll be saying lot's of prayers that all will go well!

[litliwlowa]

Tharrell,

Implants are a DEEP rabbit hole as I am finding out. That group in the past couple of days had gotten 50 new members.

Samantha can't remember her last name at the moment, but she plays Alex the DA on Law & Order SVU. She came out publicly with her horrific implant story. I think she was on  Wendy Williams show the other day. And of course reportedly Williams said the usual "oh but this is a rare complication".

Also, a woman in FL was featured on Monsters Within Me and all those years of doctors scratching their heads and it turned out to be her implants. She is doing so well now healthwise, she has started a non profit Called The Implant Truth Survivor and is currently going around the country (US) educating people.

It is workout to find a PS who either will only send them back to manufacturer or one who doesn't push replacing them.

Yes, when I have my consult, I will know exactly what I need done. And I will get it in writing. I will have my ducks in a row by then. Already have been referred to THE authority on BIA-ALCL and he emailed asking for my number as it is easier for him on the phone than in email. Good as it is easier for me to have a real conversation than back and forth in email.

That group just got a new member today with Sjogren's and a boatload of AI's, all started AFTER she was implanted.

Thank you so much for your Prayers. Much needed for sure.

And what you said about AI's? Unlike back when I got mine, NOW they say not a good idea for people with autoimmunes.

And it is only since 2011 that FDA came out with these are not lifetime devices and supposedly recommend MR every two years to check status of implants.

I have a lot of emotions running through me recent weeks. And apparently I scared my MO's nurse as she has not gotten back to me since last week Tuesday when I asked her why my MO (Med Oncologist) is apparently not aware of this implant associated ALCL which is not breast cancer but is a cancer of the lymphatic system.

If my PS cannot have the right whole punch of tests run, I will request they send it all to Mayo.

Thank you so much Tharrell. Feels good to know I have been missed!

((((((((((Hugs)))))))))))

[Jasper]

Amanda .....  I have also wondered how you are and where you have been. It is good to see you posting again.

I am sorry that you are going through all of this, but I hope you get some answers and some resolution soon.

Thank you for posting the links. I never had implants but I have had immunizations and have taken various medications over the years. I find the articles quite interesting and informative.

I know you have more procedures and treatments in the future. I really hope everything goes well for you. Please keep us informed about how you are doing.

[litliwlowa]

Amanda .....  I have also wondered how you are and where you have been. It is good to see you posting again.

I am sorry that you are going through all of this, but I hope you get some answers and some resolution soon.

Thank you for posting the links. I never had implants but I have had immunizations and have taken various medications over the years. I find the articles quite interesting and informative.

I know you have more procedures and treatments in the future. I really hope everything goes well for you. Please keep us informed about how you are doing.

Thank you Jasper! Also good catch on the aluminum in vaccines. I don't get them at all anymore. I can't.

Best I can say on that part is it behooves everyone to get the manufacturer inserts for whatever immunization they are considering. Most can be found online. Then read the inserts, then you can truly make an informed decision. Or request from pharmacy if can't find it online.

Everything we need to know to make an informed decision is on the manufacturer inserts, not the warm fuzzy handouts doc offices give out. Even the warnings on who should not receive a particular immunization.

oh and the Law and Order actress's name I referenced is Stephanie March.

I will update as things progress.

Hugs,

Amanda

[Joe S.]

It is nice to know you are still with us. Aluminum from pop cans?

[litliwlowa]

It is nice to know you are still with us. Aluminum from pop cans?

Unclear about that, but there is a lot coming out about aluminum in cookware. Aluminum is a known neurotoxin.

I don't drink sodas anyway for a number of reasons. Even the sugar free contain under various names aspartame, another known neurotoxin.