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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Wisdom in next steps for hopeful healing and medical care

Messages
37
Location
Atlanta, GA
Friends with ME,
I've been in a crash since getting vaccinated (Pfizer) which may or may not be a coincidence. Especially since the 2nd shot, my level of functioning and quality of life dropped down a notch. This, along with some recently inherited money, has triggered new zeal in my search for answers and healing.

Way back in 1998, when I was 20 years old, I got saline breast implants. Shortly after I was sick with IBD and eventually diagnosed with Crohn's disease. The Crohn's is now mostly under control, but back in 2007 when I was 29 I fell ill with ME/CFS. At the time they found reactivated EBV and basically called it chronic EBV. Since, they've occasionally found elevated EBV titers but nothing so high as to explain my unrelenting, oppressive CFS symptoms. I had an augmentation revision back in 2011, this time with new silicone implants. It was for a national breast symposium of plastic surgeons and I had one of the best in the country (may be significant as best procedures used with many doctors watching). No changes in my ME/CFS after, it remained the same. I've also never had problems with the implants themselves as far as pain, etc.

A few years ago, an integrative/functional doctor found some labs that my body was reacting to mold toxins, and urinalysis revealing high levels of 3 different mold toxins. Though our crawlspace has some mold, it is barely circulating in the house but I'm sure it wouldn't hurt to have our crawlspace remediated and waterproofed.

The current course of action that I'm most heavily contemplating is having my breast implants removed. I've researched BII (breast implant illness) and I have several of the symptoms. I consulted with the top plastic surgeon in my city and she is currently doing explants as well as research to help find biomarker to diagnose BII. She said the timeline of the breast surgeries and the onset of my ME/CFS do not necessarily line up as BII usually occurs within 5 years of getting the implants. I wonder how having foreign objects in my body is affecting my immune system and overall health. Once considered inert, they are now finding that toxic substances from the implants do end up in circulation. I have textured implants, which have been specifically recalled because they can cause a rare form of cancer called BIA-ALCL. My insurance will not remove the implants unless I actually develop the cancer and the maker of my implants (Allergan) will not pay to have them removed either. I'm not even certain that having them removed will cause one iota of healing or improvement for my 14+ years of suffering with ME/CFS.

I'm so sick of suffering and missing out on my life and my daughters life, it is almost unbearable. I've seen so many different kinds of doctors and tried so many treatments and diets to heal, with limited or no improvements. I've tried to just accept my illness and do the best I can to pace and rest, while waiting for a cure. But it seems worth it to try anything that has even a slight chance of helping because my quality of life, and of those closest to me is so significantly impacted by my disability. I can no longer work, but want to so badly.

I could spend the money on seeing a new integrative/functional doctor instead of having my implants removed. Although I know there will be an initial worsening of symptoms, I would do a detox as recommended post explant for BII and hopefully help rid my body of toxins that I can't while I have these implants (so they say). There is also a slight chance that there is mold or other biotoxins in or around the implants themselves.

Any and all wisdom or experience is welcome. Thanks for reading and your support. I'll also add that I am not a superficial person, please don't judge my getting implants. I come from a dysfunctional family where my mother was and is anorexic and my dad and alcoholic, gambling addict and sex/porn addict. My implants were paid for by my family because they thought I would have a better life and it would even out my proportions. Now I'm emotionally healed from all of those lies and recovered from the damaging messages I received. I want the best for my daughter.
 

bensmith

Senior Member
Messages
1,547
I dont think anybody is going to judge you for that, nobody worth a damn. I hope you find a way with this terrible disease.
I really dont nnow which would be better, but i hope one of them
Works. Good luck.
 

andyguitar

Moderator
Messages
6,595
Location
South east England
I wonder how having foreign objects in my body is affecting my immune system and overall health. Once considered inert, they are now finding that toxic substances from the implants do end up in circulation. I have textured implants, which have been specifically recalled because they can cause a rare form of cancer called BIA-ALCL.
There was a court ruling in France recently that has allowed 1000s of women who have implants to claim compensation for illness caused by implants that used industrial grade silicon (which is not fit for human use). However that case was specificaly about using the wrong type of silicon. What you say about the type of implant you have being associated with BIA-ALCL sounds like something worth worrying about. Get the best advice you can about the risk.
 

lenora

Senior Member
Messages
4,913
Like so many decisions, we're essentially on our own when making them. If the cancer risk is higher then I would seriously consider removal. There are so many opinions today....it almost makes it harder for us to move forward.

I missed many years of my daughters' lives b/c of this illness. I've made my peace with it, as have they. As in so many areas of life, we just do our very best....and what seems best at the time. Surgeries become more and more difficult as you become older....I can tell you that much. Build yourself up if that's your decision, it will help greatly. I'm talking physically and emotionally. Like everyone else, I wish you well. Yours Lenora.
 

lenora

Senior Member
Messages
4,913
@BonitaApplebum....I forgot to mention this earlier. One thing I really, really wish I had done was to get my family in for counseling. It would have saved all of us a tremendous amount of suffering...and expense.

True, I would have been too ill at the time, but my daughters definitely needed it and it would have helped Rod deal with them. The fallout was not good and I would hate for anyone to miss out on a prime opportunity.

It's just a necessity and we place to little value on it. I'm lucky, the relationship with our girls was salvaged, but so many aren't. Why not give them help when even they may not realize it? Wishing you well. Yours, Lenora.
 
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