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debbiej
Member
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Posted: Tue Jul 24th, 2012 16:29 |
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I just stumbled onto this site quite by accident but it has been nearly 2 years since my diagnosis of sarc. Everything I have read on this site rings true to my condition!!!
But I need help! I live in the Minneapolis, MN area and really want to connect with any health care professionals in this area willing to try MP, but I am running into walls. It seems no one has heard of it up here.
Does anyone have any information that will help me get this treatment started? I am 100% convinced that MP is the correct way to go.
Thank you
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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Cynthia Schnitz
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| Joined: | Tue Jul 29th, 2008 |
| Location: | USA |
| Posts: | 3334 |
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Posted: Tue Jul 24th, 2012 18:35 |
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Hi Debbie, and welcome to the MP forums. Here is the info on asking for the doctors list, but you may have to travel or you may have to figure some way to sift thru your local doctors for an open minded doctor. The fact that no one has heard of the MP is about the way it is everywhere. There are so many hurdles for doctors to overcome in their understanding of the true cause of autoimmune and chronic disease, that it is both a hard sell because it flies in the face of current assumptions about vit D and the cause of disease, current treatment involving making the patient feels better, but not get better, and the issue of using olmesartan at very high doses and the concern about insurance issues it causes.
Requesting a list of area doctors (please click here)
Good luck on your quest. Most of us have been there. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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Sallie Q
Board Staff
| Joined: | Sat Aug 9th, 2008 |
| Location: | NSW, Australia |
| Posts: | 1099 |
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Posted: Tue Jul 24th, 2012 21:29 |
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when you do see a doctor
It is a good idea to take a small amount of carefully chosen material from the MPKB
and also the Bacteriality reference for the web site built by Amy Proal Ph. D.
http://bacteriality.com
for a quick look, try links in my signature line at end of my reply here 
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index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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zdanr
Member
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Posted: Thu Jul 26th, 2012 00:49 |
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Debbiej,
I am a registered nurse and I just started on the MP on May 1st. I knew that because I felt so crappy that I wold not be able to communicate my feelings about the MP effectively to my doctor. However, I was absolutely convinced that it was the only cure available and that palliative treatments were not working for me. I sat down and read the actual Marshall Protocol, so that I knew what I was talking about. Next, I typed up a list of all of my related symptoms to reinforce the Sarcoidosis diagnosis. Then I wrote a letter to my doctor. I wrote the letter like a term paper with references and I also attached a copy of all of the supporting material. I included the summary of the plan, I quoted the NIH which did a study called ACCESS and included their pamphlet. The NIH conclusion was that prednisone is only palliative and can actually make sarcoid worse.
I really like my doctor and did not want to change. She knows how ill i am, but did not know what would really help. Ultimately, I left my "introduction" appointment with a commitment from my doctor that she would read my letter and an appointment for two weeks later. She read not only my letter, but also every piece of reference material that I had printed out! If you like your doctor go back and present the information again, with your letter and some take home materials for your doctor to read. The only thing that he or she can say is "yes" or "no"! If the answer is no then, your doctors mind is made up. Then go and look for another doctor. I am thrilled to be on the MP with my regular doctor. On the other website, there is an area for medical professionals where your doctor can ask questions and even talk to Dr. Marshall if there is a problem!
Think about spending some time preparing to "introduce" your doctor to the MP. That is by biggest recommendation!
Your friend on the MP,
Zdanr
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MP MAY '12 (NO BREAKS)| SARCOIDOSIS '12, Raynaud's, Coro. Stent w/normal chol., granuloma L lung, systemic and coronary vasospasms, lymphadenopathy | FIRST 25D=14NG/ML FEB '11, LAST 25D RESULT PENDING
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GillyB
Member*
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Posted: Sun Jul 29th, 2012 15:01 |
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debbiej:
Welcome! I've also recently started the MP, and went through the reluctant doctor routine. I drive two hours to see the doc I finally found to treat me. Before that, however, my naturopath of 4 years refused to treat me with the MP. I really worked hard at educating her, but ultimately she just wouldn't go there. I am one of those folks that when I've made up my mind, anyone in my way is going to get mowed down. I purchased the olmesartan without a prescription and began. I found my doc about two weeks later.
I don't really recommend this route, especially if you are severely ill. I'm not as bad off as many folks around here, and no one can say I suffer from an excess of common sense.
I like Zdanr's route, and it may work. If it doesn't, use the same documents for the next doc you try. Keep the faith, and you will eventually find an open minded and curious doc who will get you through this.
Good luck, and check back in and let us know how you're doing.
GillyB
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(MP 6/8/12, degenerative disc disease ‘95, osteoarthritis ’84, neuropathy, brain fog/memory, joint/muscle pain, benign thyroid tumors, skin issues. oral vit D3 discontinued 3/2012, 25D=20, 1,25D=56 4/20/12, NoIRs 4/30/12
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debbiej
Member
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Posted: Sun Jul 29th, 2012 17:53 |
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Hi Zdnar,
Thank you for your common sense help to get started! I have a very fine internist and she is the doctor that I am planning to introduce her to MP. So, I am preparing all my documentation and letter for her.
I am a little anxious to begin the treatment right now because I am a very busy music teacher with choirs and several piano students on top of classroom teaching. My goal (because I am not extremely ill with sarc) to begin the MP is at the end of my next school year June 2013. That will give me 3 months of quieter time to really kick off the treatment.
If you are beginning your treatment, can you let me know how it is going? I am so excited I found this discussion and thank you for helping me begin!!
debbiej
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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debbiej
Member
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Posted: Sun Jul 29th, 2012 18:00 |
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HI GillyB,
Thank you for your reply! Please let me know how you are doing and how you are feeling! I appreciate your help- and I plan on going Zdnar's direction first because I really like my internal med dr and she is ( I think!) open to new ideas and a thorough researcher.
I too am not very sick- I have the tickly cough and really horrible coughing spells with any viruses I pick up (which I do get from all the kids I teach!). My plan is to research, study, arm myself with lots of info, find a dr (hopefully my current one) and get started June of 2013. I am a little anxious to begin this at the beginning of my school term which is starting up in less than a month!
Hopefully one day we will all be written up in the new england journal of medicine as proof that sarc is curable!!
Blessings,
debbiej
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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debbiej
Member
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Posted: Sun Jul 29th, 2012 18:03 |
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Thanks Cynthia!
I am beginning to really understand this disease and the MP. I am arming myself with info and going to start with my internal medicine dr who I really like. Thankfully, I am not very sick now but my lungs are filled with granuloma.
Thanks again,
debbiej
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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zdanr
Member
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Posted: Sun Jul 29th, 2012 22:20 |
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Debbiej,
I was a school nurse for about ten years. So I know that those summers pass very quickly. You can start preparations, if you are determined to postpone starting the MP, by working on reducing your Vitamin D level during the school year. Start by reducing your exposure to sunlight and removing all Vit. D foods out of your diet, including most milk products, some yogurts, cereals, and margarines, including the Omega 3 margarines. You will be shocked by what foods contain Vitamin D. Ask for a Vitamin D level so you know how much you need it to drop. I understand the Jarish-Herxheimer (Herx or IP) reaction is less if it is under 12.
Spend time learning what is needed to prepare. As you learn and read, you will be surprised what other conditions are related. You also can review with your doctor what medications you need to or can wean off prior to the protocol. There is a list in the actual protocol at http://www.marshallprotocol.com.
Zdanr
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MP MAY '12 (NO BREAKS)| SARCOIDOSIS '12, Raynaud's, Coro. Stent w/normal chol., granuloma L lung, systemic and coronary vasospasms, lymphadenopathy | FIRST 25D=14NG/ML FEB '11, LAST 25D RESULT PENDING
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Cynthia Schnitz
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| Joined: | Tue Jul 29th, 2008 |
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Posted: Sun Jul 29th, 2012 23:00 |
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zdanr wrote: I understand the Jarish-Herxheimer (Herx or IP) reaction is less if it is under 12.
Actually, the herx/IP is more when your 25D is under 12 ng/mL. 25D is immune suppressive, so going under 12 seems to allow the immune system to work much better.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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zdanr
Member
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Posted: Mon Jul 30th, 2012 01:13 |
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Yes, I remember that now...brain fog. It would help her to get the level down while she is waiting though...right? Makes me curious if that is what has increased my symptoms.
Zdanr
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MP MAY '12 (NO BREAKS)| SARCOIDOSIS '12, Raynaud's, Coro. Stent w/normal chol., granuloma L lung, systemic and coronary vasospasms, lymphadenopathy | FIRST 25D=14NG/ML FEB '11, LAST 25D RESULT PENDING
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debbiej
Member
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Posted: Mon Jul 30th, 2012 13:26 |
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Zdnar,
Thank you for your reply. I have just begun the vitamin D elimination- you are correct when you say how many products contain vitamin d. I also stopped the multivitamin and fish oil pills. What if any vitamins/supplements are good to take? I will also look at this website to see if I can find any answers.
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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Cynthia Schnitz
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| Joined: | Tue Jul 29th, 2008 |
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Posted: Mon Jul 30th, 2012 17:12 |
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You can use the macro minerals calcium, magnesium, or potassium if there is sufficient reason to think you are not getting enough in your diet, but potassium is an unlikely need as olmesartan causes potassium sparing. Other than these, your would have to have a clear medical requirement by medical tests to justify using other vitamins. Iron and folate are two that should not be used. Even with medical tests showing a need, one should not supplement iron.
http://mpkb.org/home/othertreatments/vitamins
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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debbiej
Member
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Posted: Mon Jul 30th, 2012 18:58 |
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what is potassium sparing? I always think I need potassium, but I noticed that since I've eliminated my multivitamin and cut back on vit d, I stopped having night leg cramps, so I probably was not in need of potassium supplementation! I am really having to relearn about vitamins, etc- I have been a big user of health products and especially anti oxidants in the last decade- now I can see it's probably exacerbated my conditions!
thanks
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diverticular disease, sarcoidosis diagnosed 2010, breast cancer 2010- double mastectomy, no chemo or radiation, taking tamoxifen
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Cynthia Schnitz
Board Staff
| Joined: | Tue Jul 29th, 2008 |
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| Posts: | 3334 |
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Posted: Tue Jul 31st, 2012 03:29 |
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Potassium sparing means that the body reacts to the olmesartan by holding on to the potassium more than without the olmesartan. That does not mean for sure that you won't still need a little if you needed it regularly before. My significant other still has cramps and the potassium still seems to help (he is on the MP too), and his potassium lab tests have never shown an excess. For me, it was always calcium that reduced cramps. And in the early stages of the MP, my potassium was at the upper end of the range, so I cut back on tomatoes and it came back to the mid range. I never liked bananas.
I was a big supplement fan too, as was many people here. Seems people that take their health into their own hands are the ones that find this protocol and take the time to understand it. I took omega 3 oil to knock down the inflammation in the pads in my back for a dozen years to make my life livable. But the omega 3 oil didn't prevent other areas of my back getting slowly worse. You will definitely see the world differently after studying the MP, and seeing how so much of your past and current experiences fit into the science.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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