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HeaCat
Member
| Joined: | Thu Jan 17th, 2008 |
| Location: | |
| Posts: | 1 |
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Posted: Thu Jan 17th, 2008 21:09 |
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Hello all,
I am new to the MP sites and hope that this program will work for me. I have sarcoid and have had it for about 5 years. I was not symptomatic until after the birth of my son, 2 years ago. Since then, but mostly over the last year my breathing has seriously deteriorated to the point where I use O2 at home on a regular basis. At times I will have periods of good health where I function without O2 perfectly. Since this summer those times have been far and few in between.
My doctor has given up on me and at this point will only refer me to a University Hospital to get on a transplant list. He won't prescribe Prednisone anymore and is insistent on weaning me off of it because of the harmful side effects. I am desperately trying to find a doctor in NJ who will at least try the MP. I am not ready to give up living and loose the opportunity to watch my son grow up. Everyday I feel like I become more of a shadow of the person I use to be. I can barely walk without having to stop and catch my breath. If anyone knows of a doctor or nurse in NJ who will work with you, I beg of you to let me know. The doctor list that I received from the other site was outdated as most of those doctors are no longer using the program.
Please tell me that there is hope for me and that this is not the end. I would give anything to get my life back and be able to play with my son like a normal parent. I fear everyday that this will take more control over my life to the point where I am totally incapacitated and loose everything. I continue to hold out hope. Please help.
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GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
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Posted: Thu Jan 17th, 2008 22:07 |
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Hi, Welcome to the MP!!! You are in the right place.
Dr. Trevor G. Marshall, Phd, was given an eighteen month 'notice' quite a few years ago, to go home and get his affairs in order and enjoy life as well as he could. He is very much still alive today!!! Thankfully!!!!
To give you that hope, go to http://www.bacteriality.com and read the Interviews that are in the links in the right hand column. You might also read some of those articles in the links of the right hand column. They read somewhat easier than the forum posts. You can use them as 'foundation' for study of the MP forums... to help guide you.
It is good that your med doc is recognising that Prednisone has harmful side affects!!! Be sure that he weans you off, not let you go 'cold turkey'. Do read from this forum... Weaning From Steroids Forum
Since he said that he has given up on you, try to persuade him to continue with you by assisting you to do the MP. Give him a release from liability to encourage him to do so and make him more relaxed about assisting you. But YOU will have to read and read and read, and study to know the MP yourself. That is what most of the members have had to do. The MP thinking/treatment is not the standard yet of "modern medicine".
I suspect that some of the Advocates that have been given a diagnosis of 'sarcoidosis' will add to these comments. Just remember, names are what the med docs use. It is all ONE cause, "Th1" inflammation, no matter what the name for the malady of unknown or autoimmune cause..... pleomorphic bacterial L-forms.... a soup or stew of some fifty-three possible, causing a soup or stew of symptoms.
Wish you, and all, wellness!!! 
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Fri Jan 18th, 2008 03:20 |
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HeaCat,
George has pointed you in the right direction. I agree!
Many doctors have been willing to continue working with clients when everything else has failed. If you have a good working relationship with your doctor, this is the first avenue to try.
Suggestions To Get Your Doctor On Board With the MP
and
Letter of introduction for your MP supportive doctor
Like George, I would suggest you invest a good block of time each day to study the MP using the Phase 1 Guidelines as the starting point of reference, and provide your doctor with a copy after you understand them fairly well and ask any questions on this forum.
It took about 5 years for me to see a significant downhill slide after my initial Sarcoidosis diagnosis, but I found the MP at that point and was and still am extremely grateful to have my life back now, and I look forward to many more years to enjoy my family and friends.
Best to you HeaCat--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Reenie
Member
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Posted: Fri Jan 18th, 2008 19:35 |
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Hi HeaCat,
There are many members on the main study site that are listed as living in NJ.
You might want to do a search for other members HERE and see if one of them may be able to offer you some assistance with finding an MP Dr.
Just simply send them a private message. (you would click on their username and then click on "send a private message") I just sent one member from NJ a pm on your behalf so hopefully he will pm you back or post some info for you.
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sat Jan 19th, 2008 20:50 |
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Hello,
Please check your messages.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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wytnez
Advocate
| Joined: | Sun Jan 20th, 2008 |
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| Posts: | 16 |
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Posted: Sun Jan 20th, 2008 15:08 |
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Hi HeaCat,
I just sent you a PM. Please hang in there. There is hope. If you don't have luck with your current Doc, usually D.O's are more open. I sent you my email address so email me anytime.
Saj
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