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LeAnne
Member in Phase 3
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Posted: Fri Jun 10th, 2005 23:56 |
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Hello,
I'm really discouraged. I feel alone when it comes to moral support. Some of my family members are skeptical about me getting this information off of the internet and not just following my doctor. I had one doctor tell me he would rather not treat me, but I should try another doctor that is familiar with the treatment. Why is that? This doctor has been studying vitamin d for a while. I know he was interested in the information I gave him, but not enouph to treat me. I am still waiting on my neurologist to give me a response. He is the doctor I gave the conference cd's to. I gave him my d metabolites results today. I had them tested from the first doctor I went to. I feel when people ask me at church, "What are the doctors doing to treat you?" I try to explain what mainstream medicine believes about sarcoid, and what Dr. Marshall has discovered. I get the same skeptical response. I truly believe the science behind the protocol. I watched the conference and believe it. How do I get the moral support I need? If my neurologist doesn't do the treatment, then I will be traveling to see a doctor.
Alone in Georgia,
LeAnne
Last edited on Fri Jun 10th, 2005 23:57 by 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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Sat Jun 11th, 2005 00:12 |
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LeAnne
It is more difficult to stay strong in the face of opposition when we are unwell.. However this is the only way we are going to get well.. and the proof will be seen ...
We have a strong Community of people here and you may private message each other for support and encouragement..
for support see also these FAQs Why won't my doctor consider the Marshall Protocol?
Why is the Marshall Protocol not being discussed & used by doctors around the world?
First report from ATS, San Diego
I am hesitant to begin MP. Can you help me?
MARSHALL PROTOCOL SUCCESS STORIES
Happy MPers
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Betsy G
Member in Phase 3
| Joined: | Fri Oct 8th, 2004 |
| Location: | Meridian, Idaho USA |
| Posts: | 425 |
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Posted: Sat Jun 11th, 2005 00:20 |
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Hi Leanne,
Hang in there! The board members here are so supportive. Let us/them give you support! Personally, I don't try and explain everything to everyone who asks about my health. I formulated a general response and just don't go into details except for a few family members. It seems others don't quite grasp the situation and maybe you are interpreting their confusion as lack of caring. And that is probably not the case at all! So, give a short answer; maybe tell them the treatment side is still being explored at this time. Then you can relate more once you are implementing the treatment program you want. As far as the dr. situation goes, again, keep trying. It is discouraging; I would venture a guess that almost all members on the MP had to experience what you are going through at this time. Go with your gut feelings about what you want to do for treatment and don't let anyone belittle you or make you feel that you are not capable of making decisions regarding your own health.
Hope you are feeling well,
Betsy G.
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Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E
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kittymin1
Member
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Posted: Sat Jun 11th, 2005 02:57 |
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Hi LeAnne,
I agree. If my pulmonologist tells me he won't treat me with the MP, I intend to ask him why not! It is my right to know. I am in charge of my health. I have to be pro-active. Keep going to doctors, don't you give up. If you are confident that this protocol will work for you, that needs to be transferred when you are "selling" it to your doctor. Also, share the success stories with your doctor. You may want to ask the first doctor for a second consult. Perhaps tell him, he has nothing to lose, but everything to gain if in fact you do well on the MP (and you will!).
As for telling people, I'm quiet about it unless they are very close to me and would like to know. I have told some people at work about it who I know are th1 sufferers too, (except they aren't quite aware of it), and they think it is great.
Admin has a letter in this forum that I have used to send to my doctor. http://www.marshallprotocol.com/view_topic.php?id=238&forum_id
(You'll have to scroll down some, it starts with Dear Doctor X.) I changed some things in the letter for my own situation, but in that letter it states that the MP is an experimental therapy. I think that paragraph can be excluded because Dr. Marshall, himself, has recovered. And so have many other patients. We just are not hearing about all of them.
LeAnne, hang in there hun! If you think that the MP will work for you, it will come across in your attitude (confidence) when you talk to your doctor. If you are feeling unsure about it, you won't come across that way and they may not believe it. Be sure this is what you want to do!
My Best to you and I wish you luck with your doctors.
Mindy
P.S. Have you asked for a referral in your area?
Go to http://www.marshallprotocol.com/forum11/3078.html
Perhaps the Research Team can help!
Last edited on Sat Jun 11th, 2005 04:18 by kittymin1
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Th1 inflammation: lungs, head, skin, spine. Difficulty waking. Effexor, Allegra, BenicarHCT qd, allergy shots discontinued, minimizing Vit. D, NoIRs, Pre-MP.
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LeAnne
Member in Phase 3
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Posted: Sat Jun 11th, 2005 04:12 |
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Hello,
I have gotten a couple of lists of doctors, but they are all at least two to three hours away. I gave my neurologists the conference cd's along with information on the sarc info website. I also wrote him a two page letter asking him to consider the treatment and a small summary of my interpretation of the science and treatment behind the protocol. I'm glad there is someone to talk to. Thanks for the words of encouragement.
Thankyou,
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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jillian
Member in Phase 2
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Posted: Sat Jun 11th, 2005 05:35 |
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LeAnne,
A friend of mine came up with and idea on how to explain to people what's happening with me. Because it's taken me nearly three years and 6 docs to find a doc who will do the MP with me, I've been wearing Noir sunglasses and covering up for years! (My recommendation is to go directly to a doc familiar with the MP...) I used to go into detailed explanations, but I usually got eyes that would glaze over at the details.
Most people have some understanding of how diabetes and blood sugar works--blood sugar goes up and down in response to food eaten or not eaten. Our condition is similar, we experience surges in vit. D which make us sick, in response to what we've eaten or how much light/sun we've been exposed to.
This usually brings nods as people get it. If they're still 'with' me, I then explain that my illness is caused by bacteria that are so tiny they're smaller than viruses. They make and use the vit. D to survive--it even makes it easier for them to replicate. There's so many of these bacteria in my body that when the antibiotics kick in the chemicals the dying bacteria give off make me sick too. In fact, if I killed them all at once, these toxins could kill ME. So, I have to take a couple of years to kill them at a rate that doesn't destroy me.
And, if they ask, I just explain that this is a very exciting development in the treatment of my illness because it WORKS. In fact it's so new that not all the docs understand it yet, and that I can't wait to get well so I can live a normal life!
'til later,
Jillian from North Dakota
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Cultivate an Attitude of Gratitude!
Last edited on Sat Jun 11th, 2005 05:38 by jillian
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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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hrts4me
Member in Phase 2/3
| Joined: | Sun Oct 17th, 2004 |
| Location: | Texas USA |
| Posts: | 590 |
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Posted: Sat Jun 11th, 2005 06:39 |
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LeAnne,
I would suggest to you that a two or three hour drive is very worth it---considering the time, energy, and disappointment/stress, and financial loss one faces when trying to convince the "unconvincable" of the merits of treating you with the MP.
There are many patients who travel much farther than that in order to get the treatment they want. Some states away or across the country.
I know it's an inconvienance, I have a four hour total trip for my MP practioner, but it is worth it, to be on the protocol, have someone whom you do not need to educate, and who will support you even if the going gets a little rough, not pulling the rug out from under your feet and discontinuing the protocol. You need a doctor who will be your advocate, not someone to go head to head with.
I have gone through the stress of trying to have a ill family, and myself receive treatment, being shot down time and again. It is very stressful, and not worth it, if you can be inconvienanced by a bit of a trip---do it---it's very well worth it to begin your quest of getting well.
Come here to enlist the support of those "in the know". Very few people in life really want to know all the details of someone with chronic illness or their treatment. I find it best to simply say, my illness is being treated by a new protocol. That seems to be a clear and simple statement that makes them happy, and myself less tired *grins* I don't find it necessary to debate with "doubting Thomases", it is stressful and tiring.
Best wishes,
Hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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DNStog
Moderator
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Posted: Sat Jun 11th, 2005 07:02 |
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Leanne,
I sent you a "wordy" private email, but Hrts said it best. Most people don't want a lengthy explanation. Only one of my friends has an interest in how it works and she is a former lab tech with two master's degrees in science.
By the way, I spoke to my MP doctor about you and he would be happy to see you should you choose to come to Atlanta.
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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LeAnne
Member in Phase 3
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Posted: Sat Jun 11th, 2005 13:02 |
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Hello,
Thank you all for your advice. It makes sense to go directlly to a doctor that is already treating people with the mp, so that one may avoid being let down by their doctor in the process. I do think though, that the "word" has to get out in order for them to be educated. How will these doctors know unless we are the voices. Hopefully I have at least planted a seed in their minds. I am still hopeful my neurologist will do the treatment. Otherwise, I am not going to keep searching. I will go directly to the doctor in Atlanta. Donna, thanks for helping me, and thank you for mentioning me to your doctor.
LeAnne
Last edited on Sat Jun 11th, 2005 13:23 by 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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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1163 |
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Posted: Sat Jun 11th, 2005 14:00 |
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I spoke to my Polish friends and they don`t believe in this too  There is no one who is willing to try MP ,how can You explain that medical breakthrough has happened? Everybody would be sceptic ,the only whay to believe is to be enough sick ,try MP and find out on own skin .
I have explained some man who has sarcoidosis and explained him everything ,i told Him that Dr Marshall spent 14 years behind dark glasses ,avoiding D and it is new science etc.
He answered me that propably Dr Marshall had eye sarcoidosis ,and his doctor did not tell him to avoid sun and he has pulmonologic sarc. Of coursse i gave him Dr Marshall x rays of the lungs. They just don`t understand what is beeing talked to them ,propably by brain fog and bad experiences with other doctors.
Hashimoto discussion group is talking that i am propably trying fraud them ,and they don`t understand fact that i can`t tell them infos about my doctor cause it is medical experiment and my doctor needs to be protected from others bad doctors who will destroy everything for profit.
That is situation in Poland ,if somebody offers You free help ,You are beeing told that propably You are fraud and want to make money on sick people. That is sad but true.
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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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