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Howard
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| Joined: | Wed Mar 16th, 2005 |
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Posted: Wed May 18th, 2005 02:20 |
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| I have been looking up use of minocycline on the Internet and there is a lot about serious side effects such as causing lupus etc. Do you think they are confusing herx with symptoms of other diseases?
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Memoking
inactive member
| Joined: | Wed Apr 6th, 2005 |
| Location: | Illinois USA |
| Posts: | 314 |
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Posted: Wed May 18th, 2005 02:51 |
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That's a good question, I would like to hear the answer to that myself...My Dermatologist said that Minocycline can sometimes cause Rheumatoid Arthritis...but then he also said that they give Minocycline for Acne, so he said it was safe..
so please reply to the question about HERX...from that other person.....
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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Dr Trevor Marshall
Research Team
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Posted: Wed May 18th, 2005 02:53 |
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Nope,
We are right, they are wrong.
To go into more depth would take quite a while, and I have done that many times before.
..Trevor..
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Dr Trevor Marshall
Research Team
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Posted: Wed May 18th, 2005 03:12 |
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Look, you are both new, so let me explain a little more. We have dealt with this issue several years ago. At one point (in 2002) we were uncertain who was right and who was wrong. Then the first of the sarc cohort started to heal, really heal, and at that point we started to understand that we were right, and all that has gone before was wrong. I know it sounds a bit big-headed, but that's the way it is.
I have even been consulted on this matter (Minocycline side effects) by the Cochrane Group. Through them I will keep in touch with any changes, but at the moment, we are right, and 'the world' is wrong. It's herx.
..Trevor..
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LeAnne
Member in Phase 3
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Posted: Wed May 18th, 2005 17:00 |
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Bacteria cause the illness. Not an antibiotic. The conference cd's held in chicago showed a clip of physicians arguing about a boy having an "allergic reaction" to antibiotics, when in reality it was not an allergic reaction but probably a strong herx. (Tell me Dr. Marshall if I'm wrong.) The doctors gave the boy something to calm down the symptoms of the reaction. This is what modern medicine does these days with all chronic diseases. We don't have these illnesses because of medication, just like we don't have these illnesses because of the lack of medication. We could have all our diseased body parts cut out of us and it still wouldn't cure the disease. There is a root cause, and with Dr. Marshall' protocol it gets to the root cause! Dr. Marshall, you don't have a big head. Your's is just screwed on straight!
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Memoking
inactive member
| Joined: | Wed Apr 6th, 2005 |
| Location: | Illinois USA |
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Posted: Wed May 18th, 2005 17:17 |
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Dr Marshall..
I don't think that you have a big head..I know that you are very smart and that you have figured all this out..I am just new and nervous about it, because I haven't started on it yet..I am still waiting to get over this "virus" ( a cold and sore throat that I have)...But anyway, I guess what scares me more than anything is the HERX..I do believe that the Protocol will work, I am just scared to go thru the Herxing, not knowing what that will be, etc..
And I have a family still, I am not living alone, so I have a lot of things to do that keep my busy..so I am worried about starting on the program..But I do believe it will work, it always made sense to me when I read it....and I'm just a little scared because my regular physician is trying to talk me out of it..you see, he thinks the "Granulomas" will go away on there own, and he says even if I do the MP that I won't know if it was the MP, or the Cortisone shots I am taking, or if the granulomas just resolved on their own..He says I will spend a lot of money doing the MP....and he is basically against it as I told you before because it is not written up in the New England Journal of Medicine, as a peer review..etc..I know that its new, and I told him that, and I do believe that it will work, because the size of my LUMPS....i..e..the Granulomas, the size of them corresponds to how much sun or Vitamin D I get...for example, if I go out in the sun or eat Vitamin D foods, they get bigger, and if I leave off the sun/bright lights and Vitamin D foods, they get smaller, so to me, that is proof right there that the Marshall Protocol works, even though I haven't tried the Benicar and Minocycline yet..So I do believe that your program works, and it all makes sense to me..I do believe that I have had Hypervitaminosis D also,,because of Neural symptoms that I have had..So I do believe that you are saying the truth, and I am willing to try the MP, I am just scared of it because of the Herx, and dont know how sick I will get , I have a lot of things to handle at home, etc, with a husband and kids, etc, even though my youngest is 17, I still have 2 in college that come home, and one of them is home for the summer now..And I still have 2 other kids that come home also occasionally.But anyway, I just am afraid that maybe I can't handle the Herx, since my doctors here are not really monitoring me..My Dermatologist said he would "Monitor" me on it, but basically all he means is that he will see me once a month when he gives me my Cortisone shots for my arm lumps..and maybe I shouldn't even be taking THOSE anymore.. So I need to know if they need to be stopped,,But the MP doctor I chose in a different town says that those small amounts of Cortisone shots once a month won't make any difference..So what do you think? That's all for now.>Thanks again..>Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1132 |
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Posted: Wed May 18th, 2005 17:40 |
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Everybody of us is nervous ,that`s what keeps us unstable of rational thinking and we are giving our`s faith blindly to doctor`s who dosen`t have idea what is happening.Whe can`t blaim them cause they know that much how teachers learned them in school./ Doctor Marshall dosen`t have big head certainly. I have bigger head (thats ironic) because i had D vitaminum deficiency when i was born and my skull is not very similar  Not i have too much vitaminum i suppose ,cause i am going to check it soon.heheheh )
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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Dr Trevor Marshall
Research Team
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Posted: Wed May 18th, 2005 17:42 |
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Memoking.
The granulomas will not go away "on their own". Sarcoidosis NEVER goes away "on its own". The scuttlebutt you will read about "60% of sarcoidosis patients not needing treatment" has no basis in science, but is based on anecdotal opinions of pulmonologists, who are just plain wrong. Your doctor is being misled.
Two weeks ago I travelled to the NIH (located in the Washington Beltway) and explained to the Director, Dr Zerhouni, and his Blue Ribbon COPR committee, just where the NIH was going wrong in Sarcoidosis research, and that it was doing nothing to correct the errors in the information being supplied to Physicians and the Public.
There is a copy of our written NIH submission on the web at URL
http://AutoimmunityResearch.org/copr.pdf
and the MP3 audio of my oral presentation is online at URL
http://AutoimmunityResearch.org/copr.mp3
..Trevor..Last edited on Wed May 18th, 2005 18:34 by Dr Trevor Marshall
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shamutooth
Member in Phase 3
| Joined: | Sat Sep 25th, 2004 |
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Posted: Wed May 18th, 2005 18:23 |
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| We should, as taxpayers, be outraged at the treatment we are getting from the NIH and NHLBI. Sam
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MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10
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lab99
Member in Phase 3
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Posted: Wed May 18th, 2005 19:29 |
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| Trevor, is there anything that we as a group or individually could do to help you advocate for the MP and the Marshall Pathogenesis? Petitions to the NIH, government representatives or anything else at all?
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Sjogren's/Hashimoto's/CFIDS/Hypoglycemia/PCOS/C Pneum
Unithroid 50mcg/Cytomel 5mcg
9/27/04: 1,25D-78.9/25D-24.6 10/30: Ben 6hr 12/13: 1,25D-43/25D-14 1/24: P2 3/14: 1,25D-39/25D-9 6/27: 1,25D-31/25D-5 P3 11/22: 1,25D-17/25D-5.9
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wytnez
Member Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 614 |
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Posted: Wed May 18th, 2005 21:12 |
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Trevor,
I just listened to the MP3 of your presentation and I commend you for going to bat for all of us who suffer from Sarcoidosis and all TH1 illnesses. You took a bold stance in revealing the truth about Sarcoidosis being deadly and the misinformation that is being fed to the community about it going away on its own.
And when you said that the Access study indicated that Sarcoidosis was not a benign disease I had flash backs of what one Pulmonary Doctor told me. ***Just deal with it. You should be glad you don't have lymphoma***Hmmm isn't Sarcoid just as deadly?
But what put the nail in the coffin was when you said somebody needs to tell Bernie Mac that he has a serious disease because his physician doesn't know that but we know that. Wow!!!! I wish I could have seen the look on their faces.
I could sense the seriousness and boldness in your tone yet you were sincere in letting them know that the information that they are giving us is misleading and out right wrong and they need to do something about it. If we could start doing public service messages about Sarcoidosis, Lyme disease, CFIDS, CFS, RA and Lupus and let people know there is a curative therapy that would be great.
I know that a lot of people are to ill to fight but for those of us that can we need to have Trevors and the Research Teams back. If there are letters that need to be written then lets do it. If anybody has any suggestions PM me. I am willing to make phone calls and write letters. I even know someone who may be able to get us some air time on t.v and/or radio for this cause.
Trevor what can we do? We have to follow your lead.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Wed May 18th, 2005 21:36 |
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Saj,
Some people wonder why I don't have time to argue through every little question I am asked on the message board. It is because I am doing all sorts of things that are transparent to the web visitors. This week, for instance, I will be attending the American Thoracic Society conference and I have spent much of the last few days just poring through the hundreds of abstracts to see which sessions make most sense for me to be at.
I have so-far held back from letter-writing campaigns because we already have the attention of the highest levels of power.
The better way to go right now (IMO) is to try and get the message out in the media - that there is an answer, that some patients (for the first time) are recovering. Now is a good time because yesterday it was announced that FOX is vacillating on renewing Bernie Mac's show this season, because Bernie "has been suffering from a rare respiratory illness, sarcoidosis, which limits his work schedule."
http://tinyurl.com/dwdwe (free membership required)
So it would be a good idea to talk with your media friend and suggest that a segment showing, for example, MsDale (no longer needing her wheelchair) might be of general interest. After all the Doctors have been saying that Bernie's illness will pass "on its own", even when the NIH studies show it doesn't pass... MsDale can say why that is not true. The NIH knows, but the NIH aren't telling...
..Trevor..
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jillian
Member in Phase 2
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Posted: Wed May 18th, 2005 23:58 |
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I don't have the brain yet to do this, but my favorite national radio station, NPR (National Public Radio) has a place to submit story ideas. Here's the info and link for someone more clear headed than me!!!
http://www.npr.org/about/pitch/
Suggesting Story Ideas to NPR
The producers, editors, reporters and hosts of NPR programs are always eager for new stories, fresh ideas, and articulate guests to communicate those ideas and stories. NPR programs cover every subject: international news, science, health, business, media, sports, education, the arts, and entertainment. A number of programs offer analysis, commentary and opinion, and we are always interested in the remarkable things people do and the odd things that happen as a result of life's quirks and coincidences.
How do I submit a commentary or essay?
Please visit our commentary guidelines page.
How to suggest a story: listeners or PR professionals
Please use our story idea submission form.
How to suggest a story: journalists and producers
Most news reports by freelancers and member station reporters come to NPR's programs via one of our four newsgathering "desks"-- foreign, national, science and arts information. These desks take pitches and also solicit coverage. Desk editors work with reporters to shape and focus the story for broadcast. Please do not e-mail our programs if you want to do a story; contact our liaison to independents at: freelance@npr.org. Besides news stories, NPR also accepts audio postcards from freelancers.
'til later,
Jillian from North Dakota
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Chris
Member Advocate
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Posted: Thu May 19th, 2005 15:43 |
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Memokinkg,
Been there, done that: having sarcoid, raising kids (well, trying to, my wife had to pick up a lot of slack), going to work.
I've had sarcoid since 83, my kid's were born in 79 and 83. The youngest is graduating from Cornell this year. I'll be missing the graduation, as I'm hiding in the dark this year, and they have an open air ceremony. It's a reasonable trade-off, I get well and get to go to his wedding next spring (also outdoors).
The worst of the sarcoid symptoms put me in the hospital for weeks at a time, out of work for up to 6 months. The worst time of worry were the first 9 years, when there was no diagnosis.
The herx you can handle. You get to control the amount and timing of the herx. The worst single episode of my herx was a one afternoon of severe shakes, when I stepped up the minocin a bit too aggressively. That beats 3 weeks in the hospital with 103-105 degree fever. Now, I did take off the month of December so I could alternate days of herx and recovery. However, I think that the difficulty of recovery is based on the time the infection has had to spread, in my case over 20 years. I've been back to work since January, but am lucky to have a job where I can work from home most days.
The prednisone/cortisone you are getting is just a way to ease your slide down. Prednisone eventually damaged my sight, and was giving me diabetes and thinning bones. The mood swings are not pleasant for those around you. The severe symptoms of Sarcoid would not show up for years at a time, but the time between became shorter and shorter.
Of the choices you have, the MP is the most pleasant. If you have any neuro symptoms, you will know it works the first day you take Benicar.
Any time you need a pep talk on the MP, drop a note.
Chris
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Memoking
inactive member
| Joined: | Wed Apr 6th, 2005 |
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Posted: Thu May 19th, 2005 16:21 |
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| Thanks, Chris, for the encouragement.. I am a mother, 56 years old, and will be 57 in June, my husband works full-time. I am not working right now because I am on Disability due to some knee problems I had from my last job. In my last job, I took care of Retarded people, it was pretty strenuous. I fell a few times, I hurt my knee, I had a torn Moniscus, I had an Arthroscopy, and then after that, my knee didn't heal up good, still had pain in the knee for a long time, and arthritis in both knees, so the Dr said I could go on Disability, and my work-place agreed...So then I quit my job..and have been not working since 2000...Anyway, I don't know if I had Sarcoidosis at that time or not....but in 2003, I got some bruises on my arms, and they wouldn't go away, they got bigger, and I thought they would heal up on their own, but they didn't. I finally went to the Dr in August of 2004, but he didn't know what the problem was...He told me to get an MRI on my arms, but I didn't....Then I went back to him in October, and he said "Get a biopsy from a Surgeon", so I picked a surgeon and got a biopsy in November of 2004, but I didn't receive the results til Dec of 2004...That's when my Dr said it was "Non-caseating granulomas consister with Sarcoidosis", I didn't know what Sarcoidosis was and he didn't explain it to me either.......but he offered to give me Prednisone and see if that would clear up the arm lumps....(the granulomas)..He said I had 2 choices, I could take the Prednisone or he would schedule me to see an Infectious Disease Specialist for a 2nd opinion...So I chose to see the Infectious Disease Specialist, and saw that Dr in January of 2005..That doctor thought it was Rheumatoid Arthritis Nodules, so I went back to the my Regular Doctor and told him that, but he said that was wrong..So then he wanted me to see a Dermatologist and I saw him in late Jan of 2005, and that Dr wanted to do some biopsies, so I had 2 more biopsies done, but didn't get the results until the end of March 2005, So by then I had looked up Sarcoidosis on the Internet and found out about the Marshall Protocol, but the Dermatologist wanted to give me Cortisone shots once a month...so he started that in April 2005, and then gave me more Cortisone shots in May of 2005, so that's where I am at..I have been researching the Marshall Protocol website, and have been trying to find an MP doctor...and I finally found one.That's all for now.>>>Mary
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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