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Freddie Ash
Member
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Posted: Fri Oct 2nd, 2009 00:50 |
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HI ALL
This is Fred in WV. I was told this week that the NIH has upgraded sarcoidosis from rare to uncommon. But when I looked it up in the dictionary it said UNCOMMON - RARE. So it looks like it is just another joke to play on all the medical people and all the patients. More double talk again.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Oct 2nd, 2009 05:37 |
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Freddie,
It means Jim Kiley's group at NHLBI now has total control over all money spent in Sarcoidosis research, and they don't have to cede any of that responsibility to the NIH Office of Rare Diseases (who helped us before) and FDA's Orphan Drugs program (who helped us before).
Jim Kiley, you will recall, has said that there is no way Sarcoidosis can be caused by bacteria, even though he attended our Chicago conference in 2005, and met you, and many other patients who were recovering on the MP. He has never lifted a finger to help us.
So this move by NHLBI ensures that more and more people will suffer and die from Sarcoidosis. More of the safety nets have been cut.
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Aunt Diana
Support Team
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Posted: Sat Oct 3rd, 2009 20:30 |
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Don't you hope he comes down with Sarcoidosis some day? That would be a divine justice.
It seems that even a little "power" corrupts so many.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Barney
Support Team
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Posted: Tue Oct 6th, 2009 05:28 |
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Ditto Aunt Diana!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Oct 6th, 2009 22:03 |
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I wouldn't wish a chronic and deadly illness on anyone. However, it seems that many people do not wake up until an illness touches his/her life. Even then, many of us know, that unless it touches the person's person, s/he is still apt to be in denial or walk away. We humans are a weird lot. Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Sun Dec 20th, 2009 12:39 |
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Claire,
So true, it does take a personal involvement for others to *wake up*!!! 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Deb Grabetz
Support Team
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Posted: Mon Dec 21st, 2009 13:15 |
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Dr Trevor Marshall wrote: Freddie,
It means Jim Kiley's group at NHLBI now has total control over all money spent in Sarcoidosis research, and they don't have to cede any of that responsibility to the NIH Office of Rare Diseases (who helped us before) and FDA's Orphan Drugs program (who helped us before).
Jim Kiley, you will recall, has said that there is no way Sarcoidosis can be caused by bacteria, even though he attended our Chicago conference in 2005, and met you, and many other patients who were recovering on the MP. He has never lifted a finger to help us.
So this move by NHLBI ensures that more and more people will suffer and die from Sarcoidosis. More of the safety nets have been cut.
I've had Dr. M's post on my mind now for a couple days after reading the above and wanted to comment. For many years I believed there was something bacterial going on in my body. In my mind I felt it was a needle in a haystack...what? go to my doctor and tell him that there is something bacterial going on, please find it?? Yeah!!! Well, in the end when my sarc hit me hard three years ago and I started researching the MP-- it was a no brainer for me when I saw the bacterial connection, that I had found the answer! It is also very obvious from my progress since 2006 that the needle in the haystack has been uncovered!
For many, many years whenever I would take a round of antibiotics for an illness I would have this *surge of wellness*. It clicked way back then that these abx were making me feel better even if for a brief time. It was great to feel good, have energy, even if for a short time.
So it is difficult for me to understand, others flat out disregard for the research, when so many more could be helped by the MP.  I guess if Jim Kiley had spent 30 some years struggling with his health, he might have a whole different attitude about what to believe and invest in!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Dec 21st, 2009 15:57 |
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Surprisingly, Deb, we get the most resistance from those who have struggled 30 years with their health, and then go into deep denial at the thought that their struggle might have been futile, in vain
This is especially the case with Vitamin D. Most middle-aged women have a significant emotional investment in Vitamin D, and it gets in the way when they evaluate our work. This is also the problem with Joe Mercola, and the others who should know better... their 'experience' taints their perception.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Mon Dec 21st, 2009 16:22 |
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In regard to those who have been sick a long time, I think it may also be complete disbelief that one has to feel worse to get better. "You're not telling me I've felt this crummy, been in this much pain, suffered this much, and now, I must feel worse. No magic bullet? That's not fair!" No it is not, but thus far, it is life. It's like holding a grudge against the facts of life and the grudge only hurts the grudge holder.
I learned long ago that there was no such thing as a magic bullet (life would be a dream if there was) and was therefore totally open to the MP.
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Mon Dec 21st, 2009 17:28 |
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Ah, too the Vitamin D aspect Dr. M...Such a small life adjustment, eliminating the Vitamin D on the MP, for such a huge payoff. I don't miss it that's for sure. Used to love salmon...and yes the seafood still looks good when someone orders it but it is never a problem for me resisting it. It resembles poison to me, when I see it all cooked up 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Sedona
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| Joined: | Sat Feb 11th, 2006 |
| Location: | Alabama USA |
| Posts: | 136 |
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Posted: Tue Jan 12th, 2010 18:49 |
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That's interesting since only recently my husbands circle of friends have reported four new cases within their friends and family who have learned they have Sarcoid.
On top of that two have died unrelated to the new cases. In my circle of freinds four new cases since 2004 and none of them are doing well. The family members will not meet with me either. This disease is certainly picking up speed as I never heard of it when I learned I had it and now every time I turn around someone is calling and telling me that someone they know has been diagnosed or died as a result of a confused and perplexed doctor.
Maybe the problem is the complexity of perplexity.
Last edited on Tue Jan 12th, 2010 19:29 by Sedona
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Sedona: Neural/Lung Sarc/ biopsy 9/96| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Jan 12th, 2010 21:13 |
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eClaire
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Posted: Wed Jan 13th, 2010 03:12 |
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Sedona, I am sorry to hear about the incidence of Sarcoid you are seeing. I have been seeing symptoms all around me that I know lead to chronic illness and disability. (Of course once you know some of the signs of Th1, you do see it all around you.) Some people I predict will be disabled before retirement age while other will "just" get the diseases of aging and have less than pleasant retirements. I certainly think there will be fewer and fewer people enjoying healthy active retirements unless we get a handle on this thing.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Sedona
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| Joined: | Sat Feb 11th, 2006 |
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| Posts: | 136 |
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Posted: Wed Jan 13th, 2010 06:38 |
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My frustration at times is with patients unwillingness to try something different when clearly the often used method is not and has not worked.
Why, I wonder, do people continue to allow themselves to be treated with bad medicine. Why, I wonder, can't people read, learn and challenge convention.
When you ask a question and don't get answers that is an answer to a degree. A silent one. Where's the Umph. I don't understand it. I am baffled. Don't people want to live? Sometimes the behavior suggests otherwise. I hope I am not offending anyone.
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Sedona: Neural/Lung Sarc/ biopsy 9/96| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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eClaire
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Posted: Wed Jan 13th, 2010 07:02 |
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I don't think you are offending anyone here!
Actually, sometimes I wonder, as sick as I was (and still am) and the fact that I am totally disabled (and a drain on society... where worth is equated with production) what gives me the right to want to live? To expend precious resources so that I might live....
Well, er, me. The sound of birds, the chance to hear a child laugh, pizza, the cornucopia of stuff in the universe that makes like worth living despite hardship, the chance just to experience whatever I get to experience.
So I'm in the life boat with you, leaving the sinking ship, while folk on boat call out: "Don't you know you are in treacherous waters?!" Hey, as the song says, "I'll take my chances every chance I get."
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
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Posted: Thu Jan 14th, 2010 06:08 |
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Whoa there Claire
"totally disabled (and a drain on society... "
Many, many years ago I met a man who said since he became disabled he found himself able to do many useful things in society. Previously he 'had been earning his living by doing totally useless things'. (how useless are many of the things we buy,
let alone how useful are the people who ring us up in a veiled attempt to sell us something we do not want and can not afford.
Thank you for sharing your philosophy in so many ways in these pages
PS Aunt Diana 'there aint no justice'
Sallie
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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eClaire
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Posted: Thu Jan 14th, 2010 08:05 |
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Sallie Q... I was highlighting the sort of internalized feelings one can have growing up in a culture that measures people by their production. Sort of like internalized homophobia experienced by homosexuals.
So the idea is that we are more than what we can do. However, given how many of us become isolated, even from friends with whom we had mostly being relationships rather than doing relationships (e.g., sharing meals and conversation versus, say, tennis), I think we can begin to doubt our value. People certainly often treat us (my experience and that of others) as if we do not have value.
In that context, referring back to Sedona's comment "Don't people want to live?", perhaps some people do not believe in their core that they do deserve to live or that they are worth the effort. Perhaps they have internalized cultural messages and feel that they are a drain on their families, etc. Not saying it is conscious. Look at how many of us are in denial about our illness progression for so many years and only come into awareness about it as we come to accept that we are facing total disability, are totally disability, or are given a death sentence (told we are terminal by a doctor).
So I suppose my assumption that that would be clear was wrong, eh?
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Thu Jan 14th, 2010 15:33 |
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In that context, referring back to Sedona's comment "Don't people want to live?"
I'm reading Gilbert Barr, Jr's book "Me and Sarcoidosis: A Lifetime Partnership" and I can honestly tell you, Gilbert wanted to live!! Is it that people get so caught up in mainstream practices that they cannot imagine taking "the road less traveled"?? Gilbert was not only a smart man but also writes with a very humorous flair...so being smart, doesn't necessarily make you wise, when it comes to making the right health choices. Gilbert was aware of Dr. Marshall's work, as Trevor notes in earlier posts of this thread...so he had access to Trevor's work way back in 2003...just imagine what eight years could have done to turn his health around.
So the more I pondered this I realized that I was having such a difficult time on steroids---weight gain, high blood pressure in the danger zone, psychotic episodes, heart rate over 110 that I took the MP seriously to get off of steroids. For someone who "felt well" on this poisonous stuff, not aware of or ignoring the future risks of taking steroids long term, it makes sense that they would want to feel well. This the trade-off I believe of the MP...Invest! Yes, it takes time for most of us and much of the time we are dealing with some level of IP and don't feel well, yet we are investing in something, that I for one am already able to look back and realize is making a difference in my life.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Lee
Member
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Posted: Thu Jan 14th, 2010 18:46 |
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| My sis who has been diagnosed with some type of th1 disease (they can't decide which one) has been educated by me and now even her chiro of the MP. She has see me firsthand go from totally ill to almost 100%. She has opted to go on steroids even though she is obese. We are all upset! I give up asking "why" though. Some folks have to learn for themseleves. It matters not, that I, have almost beat sarc. She has her own journey to take. I do feel very sad because I feel we could save alot of folks alot of pain and possibly early death. Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Deb Grabetz
Support Team
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Posted: Thu Jan 14th, 2010 22:48 |
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Lee,
Must be so difficult watching your sister make such a decision to take steroids.
My daughter tells me all the time how fortunate I was, although not diagnosed for many years, that I weathered "it" without steroids. The patients that she treats at the hospital who have been on steroids have such poor health and are in and out of the hospital...one ailment leading to another. It is a total breakdown of the human body.
The following piece is from Dr. Marshall's post, of a letter written by Gilbert Barr...this was the result of his choice of treatment (steroids) and as he notes "in order to survive".
" I must take prednisone, synthroid, monopril, DDAVP, neurontin, starlix, lipitor, prevacid, tylenol and multiple vitamins on a daily basis along with getting a biweekly depo-testosterone injection and sleeping with a CPAP machine nightly...I total 15 pills a day along with 4-5 nasal sprays of DDAVP...everyday...in order to survive! Needless to say my life has been turned upside down."
It seems that I have been greatly affected by Gilbert's death, even though I did not know him personally, it is tragic when someone loses their life at such a young age of 53. I am hoping that by reading his book, it will help me to better understand his journey and his choices, although, far different from those I have chosen.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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