 |
| Author | Post |
|---|
Deb Grabetz
Support Team
|
Posted: Fri Aug 15th, 2008 18:58 |
|
The Chicago Tribune has on their TRIAGE page, a section called Julie's Health Club "Where alternative and mainstream health meet". This section now includes Sarcoidosis in their long list of over 50 categories. From the categories is a drop down menu which redirects you to any information posted about Sarcoidosis, which also includes those blogs for the MP!
http://newsblogs.chicagotribune.com/triage/sarcoidosis/index.html
____________________
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
|
eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
|
|
Posted: Sat Aug 16th, 2008 05:20 |
|
Here's a whole ABC news segment on Sarcoidosis (re Bernie Mac).... John Hopkins "expert" says it is from the clumping together of white blood cells.
http://abcnews.go.com/Video/playerIndex?id=5589749
____________________
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
|
Deb Grabetz
Support Team
|
Posted: Sat Aug 16th, 2008 20:47 |
|
http://www.chicagotribune.com/news/chi-bernie-mac-dies-service-funeral-080816-story,0,3839288.story
Great story about Bernie's "celebration" with Chicago family, friends, fans and celebrities.
Note below: This has a double edged meaning for those of us fighting for our health.
"He was very special," she said. "It's like god sent him here on a mission. He left something here that will never be forgotten."
____________________
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
|
Freddie Ash
Member
|
Posted: Sat Aug 16th, 2008 20:48 |
|
HI CLAIR & ALL
This is Fred in WV. Here is another of my long stories of my life with the Sarc. I went to John Hopkins Hospital in Oct 1982 to see their "Sarc Expert" and I was told that she did not beleive that I even had actaive Sarc. She said she had to see my slides first. She went as far as to say that who ever did my heart cath did not know what he was doing. I was told once that the doctor that did mine at Grandview Hospital in Dayton, Ohio at that time did more than any other doctor and was the only DO that was allowed to teach MDs to do the heart cath down in Texas. The "SARC EXPERT" said she could not find anything wrong with my heart. That sure turned out to be wrong, with me having to have 4 bypasses done twice and am on my second pacemaker. So I do not think too much of the "EXPERTS".
Maybe this story should go into the story part of this site so if any one wants they can move it. This is just one of the things that happened at John Hopkins Hospital. I will try to tell the "REST OF THE STORY" in that section.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
____________________
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
|
Knochen
Member
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
| Status: |
Offline
|
|
Posted: Sat Aug 16th, 2008 21:46 |
|
From the article on Bernie Mac's funeral:
The family requests that donations be made at http://www.berniemacfoundation.org, which aims at finding a cure for sarcoidosis.
Trevor, I think you have to be the one to approach them, since you have the credentials. I only wish I thought you'd be received with open arms. Let's hope they really are doing this with the aim of keeping anyone else from dying of this disease, rather than just "doing something" to make themselves feel better.
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Sun Aug 17th, 2008 01:05 |
|
Knochen,
Actually, I am the worst person to approach them, as I am seen by these sarcies as having a conflict of interest.
|
Knochen
Member
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
| Status: |
Offline
|
|
Posted: Sun Aug 17th, 2008 01:21 |
|
I guess we can't win for losing! Maybe I'll send something to them with references and see if I get any response. We can but try.  Not being a sarcie myself, I assume they would just dismiss me, since I "don't have the same disease"
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
|
Deb Grabetz
Support Team
|
Posted: Tue Aug 19th, 2008 12:17 |
|
It has been interesting since Bernie Mac died, to see all of these "sick people" come out of the woodwork. Personally, I feel this is a flaw in our society that because Western medicine has not found a way to treat sarc, understand it or even acknowledge it, that the best choice we have has been to sweep it pretty much under the rug.
Well, that is, except for the Marshall Protocol which has addressed every angle to sarc and other Th1 disease.
This is a great story written by an Iowan journalist about her father's demise with sarc! I've written to Karris and asked her to please keep writing these stories and keep this disease fresh in peoples minds. Be prepared, this one really pulls at your heartstrings!
(Note: There is reference made to a sarc research site which she says was edited from printing in this Iowa paper. Seems they would not allow any reference to research. I have emailed her though with the MP link for her own reference).
http://www.karrisgolden.com/newspapercolumn.html
____________________
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
|
Deb Grabetz
Support Team
|
Posted: Thu Nov 6th, 2008 11:29 |
|
With the opening of "Soul Men" this Friday in theatres, Bernie Mac is again in the news. I found it interesting that it is again mentioned, as had previously slipped out, that Bernie kept an oxygen tank on the set to "assist" him with his sarcoidosis. If we remember at the time of his death, the media continued to deny that sarcoidosis had any "affect" on his life! Wake up!
http://www.thecelebritycafe.com/features/21377.html
____________________
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
|
expate
Member
|
Posted: Sat Nov 15th, 2008 20:46 |
|
I saw Soul Men last weekend. It was pretty darn funny. Jackson and Mac were both great and clearly had fun with their roles.
 dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
|
Deb Grabetz
Support Team
|
Posted: Sat Nov 15th, 2008 22:03 |
|
Thanks Odette...Sounds like you're giving it a
thumbs up !!!!
____________________
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
|
expate
Member
|
Posted: Sun Nov 16th, 2008 00:42 |
|
It's a definite thumbs up. However, there are some bits that are a bit risque, nudity, etc. Then there's the language, if that kind of bothers you. And there's the stereotyping.
But you know, it felt kind of honest -- nobody comes out smelling like a rose and only those who can laugh at themselves come out on top.
 dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
|
Deb Grabetz
Support Team
|
Posted: Sun Aug 8th, 2010 12:59 |
|
Bernie Mac's wife sues doctor for negligence. Sadly, I believe that too many doctors are just not aware of the long term effects of sarcoidosis. Had they been, they would have realized that it was not the pneumonia causing Bernie's problems but his long battle with sarcoidosis. The article notes that he was given an injection for a "cold", again not connecting the possibility that he was having issues with his sarcoid.
http://www.people.com/people/article/0,,20408495,00.html
____________________
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
|
mdimock
Member
|
Posted: Sat Jan 22nd, 2011 21:07 |
|
To magsmom,
Hi, I've been keeping my eye out for other sarcoidosis or Th1 patients who have neuropathic facial or jaw pain. It looks like you fall somewhere in this category. My facial pain is apparently a trigeminal nerve that was probably (my theory) damaged some time in all the dentistry I've had done. That would have been fine in a non Th1 person, but with the extra inflammation, this nerve flared up. It has been my main symptom, very stable, for over 4 years now. I believe I've had sarc for much longer than that, and that the nerve pain will probably be the last thing to resolve (something I've been told on the MP site, based on others' experience). I've been given various drugs for the pain (topamax, gabapentin, amitriptyline, and the dreaded KLONOPIN). Nothing helps very much except sleep. Pain usually around a 4 each day, worse by end of day. Muscle cramping around the area as well. I am weaning off benzodiazepenes now since I think they are interfering with MP. Would love to hear your experience with facial pain.
____________________
Sarcoidosis/facial neuropathy hypothyroid 125D65 25D16 Ph1Apr07 Mod P2Nov07 P2Dec 07 thyroid Klonopin amitriptyline ambien NOIRs, cover up|
|
Current time is 11:47 | Page:   1 2 |
|
|
|
|
