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Yeah yeah and all those great mega high priced scientific drugs killed by sister. They were supposed to slow down the progression of MS. Bull.
I'm sorry for the loss of your sister, but the medicine did not kill her, MS did.
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I'm sorry for the loss of your sister, but the medicine did not kill her, MS did.
The mega drugs she ingested didn't help her. I get angry and at her too as she loved life. And trusted the drugs. We were sisters but very opposite on our healing thinking.
The mega drugs she ingested didn't help her. I get angry and at her too as she loved life. And trusted the drugs. We were sisters but very opposite on our healing thinking.
It is your opinion that they didn't help her. Obviously she disagreed, because she took the. If you are convinced that grape seed extract or some other supplement was going to be the sought after cure for MS you are wrong.
There is no cure for MS, so I'm not sure what you thought would happen.
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I'm not talking cure, again, slowing down not advancing the disease was what all the drugs were supposed to do so says the MD's. She trusted them so she took their drugs. I was not her doctor although I tried to talk to her in the early years but so much went on deaf ears. I said we are totally different in our healing ways. Drugs kill millions annually. Yeah I know they do some healing...that's what will be returned to me.
I'm not talking cure, again, slowing down not advancing the disease was what all the drugs were supposed to do so says the MD's. She trusted them so she took their drugs. I was not her doctor although I tried to talk to her in the early years but so much went on deaf ears. I said we are totally different in our healing ways. Drugs kill millions annually. Yeah I know they do some healing...that's what will be returned to me.
But how do you know what she took DIDN'T slow down the progression? All sick people die before we want them to (not counting that we of course don't want them to suffer). So though we want them to live EVEN longer that doesn't mean what they were doing didn't help some.
There may be individual differences in how a treatment affects you but at least with scientific studies backing up the treatment there is some assurance that there is an impact above doing nothing. If you want to throw in other supplements - by all means - as long as they don't interfere with other treatments with evidence behind them or that the supplements take the place of something more effective overall.
Illness and disease kill a lot more people than the drugs intended to treat them. They may not work as well as we'd like...it's too bad that humans weren't "designed" 100% healthy or born with 100% of the medical knowledge to treat ourselves. But throwing turmeric grape seed oil or acupuncture at everything isn't the answer.
My 19y/o has had aggressively progressive Crohn's since age 10.
She had a saint, I mean a true saint, for a pedi GI. He was brilliant as well. This is a doc who gave parents his PERSONAL email and replied within hours at the latest, even when on VACATION, to all qs. She left his care after 8 years when she turned 18 and went away to Uni.
He had several patients on LDN; he was willing to try anything within reason to help his patients.
He said one of the three responded well and the other two it did no good.
LDN is relatively harmless in comparison to the horrible drugs needed to combat AI diseases such as Crohn's (my daughter has been on ALL the drugs except Stelara and Cimzia and failed them all; is now struggling on Entyvio and a handful of other drugs) so worth TRYING anyhow.
The thing one must remember is AI diseases are VERY very individualized (the Saint told us this) and treatments that work for one do not work for another, which is why no two treatment regimens look alike, usually. My daughter has been on as many as SIX meds at once, to two years with NO meds, just NG feeds.
Yeah yeah and all those great mega high priced scientific drugs killed by sister. They were supposed to slow down the progression of MS. Bull.
Should have included this in my above post.
Jamin, MS is an autoimmune disease. The drugs used to slow the progression of AIs ARE harmful, you are correct. But the disease is destructive as well.
AI diseases are truly a no win. The "cure" (cannot cure an AI disease, laypersons use the term wrongly) is as bad as the disease but it is all we have. Trust me I watched this happen for 8 years with my kid. I avoided drugs for her for 2 years then had to succumb as she was bedridden at age 12.
My 19y/o has had aggressively progressive Crohn's since age 10.
She had a saint, I mean a true saint, for a pedi GI. He was brilliant as well. This is a doc who gave parents his PERSONAL email and replied within hours at the latest, even when on VACATION, to all qs. She left his care after 8 years when she turned 18 and went away to Uni.
He had several patients on LDN; he was willing to try anything within reason to help his patients.
He said one of the three responded well and the other two it did no good.
LDN is relatively harmless in comparison to the horrible drugs needed to combat AI diseases such as Crohn's (my daughter has been on ALL the drugs except Stelara and Cimzia and failed them all; is now struggling on Entyvio and a handful of other drugs) so worth TRYING anyhow.
The thing one must remember is AI diseases are VERY very individualized (the Saint told us this) and treatments that work for one do not work for another, which is why no two treatment regimens look alike, usually. My daughter has been on as many as SIX meds at once, to two years with NO meds, just NG feeds.
The scary thing about Crohn’s is that despite all the research it’s still not clear if it is AI or not.
“The causes of Crohn’s disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.”
I feel for your daughter because the hope is really about finding a new treatment and staying ahead of the disease. I’ve never needed more than 5-ASA or Entocort, but know others with bad strictures, multiple surgeries and constant biologics.
Jamin, MS is an autoimmune disease. The drugs used to slow the progression of AIs ARE harmful, you are correct. But the disease is destructive as well.
AI diseases are truly a no win. The "cure" (cannot cure an AI disease, laypersons use the term wrongly) is as bad as the disease but it is all we have. Trust me I watched this happen for 8 years with my kid. I avoided drugs for her for 2 years then had to succumb as she was bedridden at age 12.
OverItAll: does your child have both crohns & MS? I'm piecing your posts together.
Bedridden at age 12. I didn't realize MS could hit a young child. My sister's first encounter with the possibility that it was MS was at age 21 or so. How is your child now?
I know it is destructive. I know some other people who take very few drugs if any and work with many alternatives to control their MS. I'm just angry about all the toxic harmful drugs and how my sister's body went down so terribly in the last few years, she could not talk starting a couple yrs ago ... yes, I'm blaming the drugs a LOT. She was not good on the nutrition issue but maybe she changed some, we lived 3000 miles apart so I didn't see her much after 2005 and was not "watching over her". Did the doctors talk nutrition? I have no clue. But they talked drugs and pushed them.
OverItAll: does your child have both crohns & MS? I'm piecing your posts together.
Bedridden at age 12. I didn't realize MS could hit a young child. My sister's first encounter with the possibility that it was MS was at age 21 or so. How is your child now?
I know it is destructive. I know some other people who take very few drugs if any and work with many alternatives to control their MS. I'm just angry about all the toxic harmful drugs and how my sister's body went down so terribly in the last few years, she could not talk starting a couple yrs ago ... yes, I'm blaming the drugs a LOT. She was not good on the nutrition issue but maybe she changed some, we lived 3000 miles apart so I didn't see her much after 2005 and was not "watching over her". Did the doctors talk nutrition? I have no clue. But they talked drugs and pushed them.
No MS, (bedridden was from pure weakness, though well nourished via NG feeds of formula) Crohn's since age 10 as I said and within the last 1.5 yrs, suspected RA as well.
Recommended to get a rheumatologist consult but she is refusing as she works 2 jobs and is at Uni so is trying to "ignore" her symptoms. So foolish after I took impeccable care of her until she moved away, she knows better but I think is desperate to feel normal. Fun fact re: big pharma costs. Her Entyvio costs 16K that is sixteen thousand dollars PER infusion which she gets every six weeks.
Her current GI (NOT a saint like the pedi GI, barely adequate in fact) said given the aggressiveness of her disease course he is not surprised to see her display symptoms of another AI.
@markjames, yeah, I too agree it is likely of different etiology in different pts. Some seem to have a bacterial component at the base of it (MAP) but in cases as my daughter's (ZERO fam hx, early and aggressive onset, an inflammatory "type" of asthma that appeared for 2 years then vanished) she is believed to have an AI version. She was seen by every specialty (rheumatology, cardiology- she has POTS as well- neurology, hem/onc, GI and general peds) in the early days.
She has been living with a known stricture in her TI since 2015, sx is highly recommended and she is stalling because school.
Odd coincidence, my son in law aged 34 developed Crohn's and had a blowout that nearly killed him (peritonitis, sepsis, 3wk in hosp another 2wk off work) last year, from stricture. He was undiagnosed until the perforation. He lost 18in of bowel. Ironically he is an NP!
Last edited by VexedAndSolitary; 10-10-2017 at 11:34 AM..
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