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rebeckah
Member in Phase 2
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Posted: Sat Jun 28th, 2008 18:36 |
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I think this community forum is a great and needed thing. Thank you for creating it!
My current pulmonologist is at the University of Michigan, and unbeknownst to me at the time, they can only prescribe/treat patients in hospital approved ways. I guess they're worried about lawsuits. So I was doomed to "NO" from the start from him. I did find a DO from the DRs list who is treating 2 other MPers and I think some RA patients as well?
So, I am now in Phase 2, but am switching Pulmonologists with the hope that I can get her (my new pulmo) to also treat me with the MP. Since she's never heard of it, I may have a good chance IF I approach her in the right way. I've presented the MP to about 3 DRs so far, and they've all said no, but they're all in UMich. Each Dr had different concerns, one it was the science, the other it was the safety of the Benicar, one, well, I guess it was just being wrong & that I knew something he didn't. Wiener. So, not knowing what their concern would be, I end up having too many print outs, and that worked against me too.
So, I'd like to discuss how you approached your DR and got them to agree to it.
~How did you find them?
~Which printouts if any did you bring in?
~Specifically, what did you say to them that sold them on the idea?
~Are they researching the MP independantly?
~Are they treating others with the MP?
it'd be interesting if we could make a poll.
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Sarcoidosis/lungs 125D39 25D8 Ph1 Jan08 Ph2 May08 oxygen 24/7 famotidine omeprazole lo lux home NoIRs limited outings covered up
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 60 |
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Posted: Sun Jun 29th, 2008 05:50 |
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I was told the best doctor to ask is your own general practicioner. In the end, that is who has become my MP doctor. I'm thrilled. He's a great doc!
I had gone in to an appointment with three outlines of my medical options. I wanted a referral to a rheumatologist who had a great reputation, to investigate MP, or to stay on the Dr Brown's AP. I had started with Dr. Browns protocol. I left these outlines of options along with information downloaded from the packets for physicians site. My doctor knew I was exploring all options. After things progressed and my blood tests came back with a couple bands of positive lyme and a positive RF. At my next appointment he said, well Marshall treats both lyme and RA. Let's set you up with the marshall protocol. I'm thrilled because last week was a follow up appointment with him and he's happy with how I look and blood results were fine. I am doing much better on the MP than I was AP. I've been on the protocol 2 months and am very satisfied. Thrilled to have gotten my life back. (With the exception of sunlight.)
I had asked the rheumatologist about the protocol, and he immediately balked at the idea. He was interested in seeing the DVD, but never looked at it before he returned it to me.
~How did you find them? My own general doctor.
~Which printouts if any did you bring in? Recommended ones from the site.
~Specifically, what did you say to them that sold them on the idea? I let him look at it over a month's time. When I came back to him, it was his idea. I think he's interested in it.
~Are they researching the MP independantly?
After my last visit, he said he'd take a closer look at the MP. Up until that point he was really busy with work and preparing for boards.
~Are they treating others with the MP? Not that I'm aware of, however, one patient has already asked me if she could see my doctor for the MP. My doctor is a true gem even before he said he'd help with MP. He's overall a wonderful doc. He really impressed me a few years ago by calling me at home after work hours to answer a question I'd called in to the clinic for. He heard me over the phone, and said come in first thing for xrays, you have pneumonia! I had a mild fever and some aches and no cough (yet!!). He was deadon right. I'm hoping to keep him as a doc for a long time! I love this guy!
Sometimes it helps to present several options and get them to pick the "best." He's even offered me extra sample benicar. He is so incredibly nice!
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RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
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marion villa
Member in Phase 3
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Posted: Mon Jun 30th, 2008 03:45 |
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I live in Mexico city.
Here the MP is not known. I was a very lucky woman, because an american friend, who also has lupus put me in touch eith the MPsite,in fact, she couldn´t stand the first benicar doses.....But I´m truly grateful to her for this big help.
The issue is that I has plaid for help a lot, I have several doctors, some which are friends others just known of my famuly, NO ONE , no one is interested in commit a little and read or study the MP papers. There is a lack of interest,in learning more then they know, they think they are wisdom owners, guess what, they are deep ignorant people.( they call themselves profesionals though)
I studied dentistry, so that helps me a little to read the MP by myself, and to be a patient for so long and to research on my own for so long also helps. I knew that the prednisone and arava werent doing good anymore, and when I first read Mp I clearly saw this was the path I must follow.
So I´m a little alone here, buying abx and benicar is no problem here, if I have the money. To buy codeine I need prescription, so I treasure my dose .
I´m very happy and confident...
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
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Posted: Sat Jul 5th, 2008 21:06 |
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My first MP doctor was just happy I was willing to try anything giving that I had been totally disabled for three years. I wrote a letter to him, briefing explaining the MP, gave him supportive printouts, and the DVDs. I then read him the letter, explained the safety of Benicar and the organ protective qualities of it, the names of the abx used and how prescribed, and since he saw nothing wrong with the drugs used, he immediately agreed to do it.
When I needed to find another doctor, someone told me of a doctor whose wife had CFS. I personally think that is a great strategy. In any large city, there have to be docs who have spouses with an illness we've been diagnosed with. My new doc, hearing that I was already on a protocol, was willing to walk down this road with me, not only to help his spouse, but to see if this would be something he'd want future patients to try. I'm not saying he's entirely on board, as I think he is just watching me. However, when I get well, I think he will begin suggesting the MP to other patients.
I also provided the second doctor with a cheat sheet with the best quotes and links I could find regarding Benicar safety, drugs to avoid, what to do in an emergency, important Bacteriality.com links, and a description of my responsibility as a co-hort and the link to my progress reports.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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rebeckah
Member in Phase 2
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Posted: Sun Jul 6th, 2008 00:15 |
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wow Marion are doing the MP on your own then? If so, you are very brave and strong.
Gee Claire, you were really prepared. I'm impressed. When I first presented the MP to Drs I was so much sicker and had a much harder time just understanding the MP myself.
When I first started researching the MP like everyone else I started reading on the forum and then opened a link, started reading, opened another link, read, opened a link, re-read the thing I read 3 pages ago, opened a link, read, opened a link.... well you know how that goes. I was reading the same material over and over, and even on the same page I've found material repeated, like two paragraphs down, word for word even! I'm not complaining, I think everybody has and is doing a great job here, I'm only discussing how frustrated and overwhelmed I was as a very sick, brain fogged person trying so very hard to get CLEAR information that I could present to someone else. That's HARD when you're sick. Anyway.... I recently found
http://www.ginariggio.com/MP/PHYSICIANSGUIDE.pdf
which I think is the PERFECT thing to introduce the MP. In fact everyone should start by reading that packet. It's clear, concise, to the point and answers directly what we all need to know. It's ONE packet of info, about 40 pages long (some blank pages). I WISH I had come across this when I was first researching the MP. Between that & the quick reference printouts.... which I just wasted 30mins of my life trying to find and didn't...
sigh. anyway, those two things will help.
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Sarcoidosis/lungs 125D39 25D8 Ph1 Jan08 Ph2 May08 oxygen 24/7 famotidine omeprazole lo lux home NoIRs limited outings covered up
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
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Online
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Posted: Sun Jul 6th, 2008 00:33 |
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There's also the new link that Amy has on bacteriality.com that provides the science behind the MP. It is absolutely fabulous. I will be giving this link to my doctor the next time I see him. It's an 80 some minute slide show with audio.
http://bacteriality.com/2008/05/07/mpintro/
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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carol
Advocate
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Posted: Sun Jul 6th, 2008 07:15 |
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Hi Rebeckah:
How is your doctor search going? I will send you a PM with the name of my MP doctor. He is a GP, not a pulmonary doc, but is near you geographically.
He initially agreed to consider the MP because he had to admit that my RA had gotten much worse after I started taking the large doses of vitamin D he had recommended. My D metabolite test results sealed the deal. He has been pleased with my progress and respectful of my desire to do the MP “by the book“.
I decided early on after my diagnosis with RA that I would spare myself the stress and aggravation of trying to work with a mainstream rheumatologist. That was a big hurdle. When you have a serious illness it seems like you should seek out the care of a specialist, right???
I bring this up because I think it is worth asking yourself the question “Do I really need a pulmonologist?” Perhaps you already have contemplated this. I see you are on O2, so I realize your situation is different and, I‘m sure, more complex than mine was when I started the MP.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Meg Mangin R.N.
Former Staff Member
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Posted: Sun Jul 6th, 2008 08:03 |
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Marion, we understand that in some countries it is possible to obtain the MP medications without a prescription. In the USA this is illegal and we require all subjects in our study to be under the care of a doctor who is aware of all the medications they are taking. Please see your doctor regularly and be honest with what you are doing. S/he is responsible for your welfare and cannot ensure your safety if s/he is not fully informed. 
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marion villa
Member in Phase 3
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Posted: Sun Jul 6th, 2008 19:56 |
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hello Meg:
I talked to my doctor, and handed her all the MP info I printed, ( the guidlines)
She agreed to read them and study them, but I noticed she hasn´t done that in a responsable, or efficient way, because sometimes she ask me how is it going , and when I respond about the IPR, she doesn´t know very well what I am talking about, sometimes she has tried to prescribe things not blendable with the MP, or I see her face that if she were surprised by what I tell.
I haven´t found an enoughly desperate doctor willing truly to commit and study, for example, one with a son or wife badly ill, as us, as you said Claire. I have some medical experience with my carreer, although is not a complete doctor, I was a good student ( odontology). I don´t want to be ill more time of my life, just waiting for a doctor kind and smart enough to help me.
I´m being very careful, and respect every aspect in the MP,and I try to teach my doctor, as much as she lets me. and MP is working for me and I am very happy and with hope for the first time in almost half of my life.
Look Meg, I'm being very honest with you and with my doctor, I would feel much better if my doctor wished to know better the MP matters. I keep telling every doctor I meet about the MP, to see if there is one interested in helping, but not finding one yet..
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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rebeckah
Member in Phase 2
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Posted: Mon Jul 7th, 2008 18:56 |
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thanks Carol. I think a pulmonologist is helpful because he tracks my PFTs, does MRIs, CAT scans and such. And if I get URIs he's the one who'll prescribe abx. MY GP is booked 7 months out and I won't ask the MP dr. about it, as he always refers me to my pulmo. Actually, so does my GP. My pulmo tells me to talk to my MP DR. Round and round we go. whee. 
I'm always changing Drs as I usually don't like them. lol. They also get really locked in to seeing me only one way: sick. So, in the past as I've made big improvements in my health I've needed a DR who has an updated opinion/vision of who I am and how my health is. I found in Texas my DRs just could not revise their opinions of my status. So I had to change DRs. Worked for me.
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Sarcoidosis/lungs 125D39 25D8 Ph1 Jan08 Ph2 May08 oxygen 24/7 famotidine omeprazole lo lux home NoIRs limited outings covered up
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
| Status: |
Offline
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Posted: Sat Jul 19th, 2008 20:40 |
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We got lucky with our doctor. She knew that we'd been researching everything we could to push back CFS and MCS without any real luck, though we'd tried loads of approaches and spent enormous amounts of money on supplements. And she couldn't find any solutions within the medical science she'd looked at that we hadn't tried already with poor to no results.
So when we arrived with the MP site's print-outs and discussed what we understood from reading through the site information, she weighed out the risks of the meds and then wrote out the needed prescriptions. Was immediately on board as the drugs have low risk factors and we are very sick people who need any help that can be offered. She didn't feel it would be ethical to say no just because she didn't have the time to really sink herself into the science and information here.
And then she moved. 
But we were very, very lucky that her friend that she'd mentored through the last phases of her medical training was moving to the small town we were moving to. So she recommended us to this new doctor and she agreed to the MP because she trusted our first doctor. This new doctor hasn't dropped herself into the material either, but she's a very good person and as we heal, I know her interest will be seriously peaked.
Our only concern now is that she's pregnant and we won't know if her hand-off doctor will supporting us while she's on maternity leave. She'll write us out all the prescription scripts we need before she leaves, but if we get into trouble? Could be fun.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Dr Trevor Marshall
Research Team
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Posted: Sat Jul 19th, 2008 21:22 |
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Juanita, you also need to make sure that your doctor lets the physicians at the local hospital know that you are on special study meds, and they should be very careful before beginning any interventions. Take a look at this info:
http://www.marshallprotocol.com/forum23/10332.html
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
| Status: |
Offline
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Posted: Sun Jul 20th, 2008 06:04 |
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Thank you very much for that, Dr Marshall! We will make sure that we take care of that, including paperwork by her if need be. Thank you, I wouldn't have thought of that precaution.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Deb Grabetz
Advocate
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Posted: Sat Aug 9th, 2008 14:15 |
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My doc came from the MP referral list. I chose this route rather than using my local GP as I was too ill to deal with training him on the MP. I do intend to share this with many local doctors in time...including my pulminologist, who saw there was real validity to the science and told me so but was not willing to step out of his very guarded box!
It just so happened that the doc I chose, was enlightened with the MP by Morris Milnes. Morris was his very first MP patient and he had been treating Morris until he passed. Still remembering you dearly, Morris! My docs name popped out at me from the list every time I picked it up to review it..as if it had it's very own neon light going off. I'm a believer in things happening for a reason...and after so many doctors in a lifetime...I left his office thinking for the first time in my life I had found my pot of GOLD at the end of the rainbow with the MP! Now, 18 months later, I KNOW I HAVE!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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kenc
Member in Phase 2
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Posted: Sat Aug 16th, 2008 22:44 |
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| I know someone who since January has been going from doctor to doctor trying to convince each one to administer the MP for her. Does anyone have any personal experiences convincing doctors that could be of value to her. Last edited on Sun Aug 17th, 2008 02:13 by kenc
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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kenc
Member in Phase 2
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Posted: Thu Aug 21st, 2008 02:00 |
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I realize now that this topic is the same or similar to the the topic How did you get your DR to do MP? in the discussion "How is the MP working for you?"
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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