lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
this is a little political but not "lyme" political. it is like how we talk about drug companies and insurance companies wanting to make money off us...
and its not really off topic cuz many of us have both cancer and lyme now and of course the whole immune issue...if you get one you're more apt to have problems with the other
ive had lyme most of my life-it took 15 yrs after sx got bad to get dx and tx
so i have been fighting lyme and what it did to me about 30 yrs. then last spring breast cancer was found.
what a roller coaster ride that was. all of a sudden i was "really" sick and i felt like i was on a down hill train without brakes.
there were social workers and support groups and many different docs...this big well oiled machine i was on...and i tried really hard to research stuff...asked "smart" people i know and respect to help...but now-7 months later i am really questioning what happened
my point here is to help those who find themselves having to make decisions about cancer tx . im just going to post a link and a short quote from it. its just like when an idsa doc says..."youll be fine-this 3 weeks of doxy is just a precaution-you dont really need it"(or any of the other ignorent things they say)
cuz just cuz its cancer...doesnt mean the docs know what they are talking about. they are following "standards of care etc" and being good little robots to keep their jobs and grow their practices....
so-one of about 6 pretty invasive procedures i had to have required a lot of pain, no anesthesia, and over 20 mammo shots while this guy who didnt seem to have a clue what he was doing stuck a wire guide into my breast for the surgeon to follow since my lump was so small(3/8") the surgeon would not have been able to find it
and now...when i am recovered enough to start to understand what i read about how to prevent cancer from coming back i find out 3 of the procedures they gave me...some over and over again...can actually cause cancer
so here is the link and the short blurb that has me the most upset. i would really like to find the actual studies but havent yet. and please dont be upset about this guy coming from yale...it really seems like he might be like one of our hero llmds - not afraid to speak up when something really wrong is happening. and if this thread stays maybe add more research...
Dr. Smith maintains that many imaging devices do not work as advertised by their manufacturers, produce many false positives and subject patients to needless rounds of potentially harmful radiological testing. Moreover, he says they waste enormous amounts of federal Medicare aid. Dr. Smith said that his sole goal in making his complaints was to protect Americans from harmful medical devices and that money was not a motive. His concerns are now getting another look. The Office of Special Counsel, which investigates whistle-blower grievances, found in a confidential review this spring that Dr. Smith’s allegations raised a “substantial likelihood” of serious problems and required a full review. That has triggered an investigation by Kathleen Sebelius, the secretary of health and human services.
A graduate of Johns Hopkins University and Yale Medical School, Dr. Smith was a respected radiologist who set new standards for diagnosing kidney stones with groundbreaking research in the mid-1990s. Colleagues described him as both brilliant and bombastic, and he clashed with supervisors in his jobs on the medical faculties at Yale and Cornell.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Great post kayak. I'm sorry you went through what you did. How are you feeling now?
Posts: 1728 | From USA | Registered: May 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
This is a great post LP.
It is good to have this so it shows up when LNers do searches and also to keep dialogue open about experiences-good and bad.
Not easy to talk about...but I really appreciate you posting this. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I hope you continue to be OK, kayak. What a hard path we all take.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Im ok now...but its never really over. They keep checking..there are protocols...but i am especially concerned about mammos squishing the breast and spreading cancer cells or just causing it since the new 3 d machines have 3 x the radiation. Also they say biopsys can spread cells.
I would really like to see the whole study that shows these things but havent found them yet. If anyone knows where they are please post a link here I feel very lucky y to have found this new gyn doc who is also concerned and wants to see the studies
Thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lp, I'm so sorry to hear you went through this. I share your concern over squishing breast tissue, and biopsies. I think I posted this on one of your other posts, but I saw a segment once (think it was on the news) where the doc or scientist stated that the body is actually trying to encase the cancer and kill it (cyst). There was more, but that's all I remember (sorry).
I generally like to take note of anything related to health issues, prevention, etc (I watch a lot of Dr. Oz). Even Dr Oz has said that modern day medicine is actually 50 years behind what is really going on (think cigarettes and the surgeon general 50 years later telling everyone that they cause cancer).--Think evidence based medicine model (seriously flawed for anyone with chronic issues).
I recently watched an episode where Dr Oz suggested that everyone follow their gut when it comes to their own health, procedures, etc. He said that patients know their own bodies better than doctors do, and if something doesn't seem right, don't do it. So that's my plan.
IMO, no one is going to risk arguing that mammograms and biopsies are bad. I'm sure the radiologists all need their jobs, and the companies that manufacture the equipment stand behind them because they believe they are of value. I don't have 50 years to find out, so I'll follow my gut and pass (my choice, not theirs).
I would also focus on diet. Have you read: The China Study yet (Campbell)? Really good book. Also: The Food Revolution (Robins). Worth reading.
There is info here about squishing the breasts and cancer.
Hang in there Lp. I know it's tough to follow your gut.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ty catgirl-i'll read them soon. I totally agree about following gut feeling
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lp, I can't even image your thought process you have had to go through over this whole thing.
I'm so sorry. I wish I could have been there sitting at your home with a cup of tea or coffee, while you expressed all your doubts and fears. I wish I could have been your sounding block, your research buddy, your strength.
Whistle blowers must scream loud. Whistle blowers must go against of grain. Their heart and soul will not allow them to be part of something that is so ugly, so untrue and so illegal.
Can you image the stress of being a whistle blower? To know you are putting your whole career and lively hood on the line?
Whistle blowers can and will be made out to look like criminals and some actually must leave their homeland, the great USA in order to hide from the powers that be. Can you image what that would be like?
What would it feel like to have your own US government following you, reading your email, spying in your home, making you out to be the BAD guy because you have enough proof to blow the powers that be to kingdom come?
Would our elected officials/gov and the higher ups in Corp America actually do anything to protect their vested interest in some wrong doing?
You bet they would. This whole experience for the last 15 years has taught me so much about the way the SYSTEM wants us to think, behave and just go with the flow and trust them.
I'm so disappointed to learn that this world is truly a dog eat dog world. The evening news scares me. I can't comprehend what some people do.
I'm so happy when I see good stories....it gives me faith that there is still good in this crazy world. I truly believe that good will always outweigh evil.
Not to far from my city a family suffered a horrible house fire last week. Mom and 7 of her children died in that fire. Dad and one daughter survived. They are in hospital suffering from burns and emotional pain and a horrible nightmare.
The Band Perry, country music band, stepped up and paid for all the funeral expenses for all those people they didn't know.
There is good people in this world. The Band Perry will be repaid in so many ways in life. Not just monetary payment, but blessings from doing something so wonderful for something so sad.
God Bless The Band Perry! If you are a fan, download a song, buy their music. Honor them by doing something good for someone in your city or town that is suffering. Follow their example.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I just brought this up cuz i think dr mercola sent me the good study today but i cant get at it from my phone...when i can move better and get to my computer i hope i can find it and bring it up
Sometimes stuff happens and i dont follow thru so if anyone can get it and put it here it would be good
And i'll ask my question again
After my biopsy and lumpectomy a lot of pathology was done and it clearly showed a very specific cancer
At least thats what they told me...and. just like how marketers lie to me all the time i just dont know if i should believe them
Can someone tell me if they say its cancer...can they be wrong?
I know of two ppl who were told they had brain cancer and after a surgery that left them very dibilitated they were told it wasnt cancer after all...of course i thunk in both cases it was lyme as they both were in very endemic areas with ppl all aound them having lyme
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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