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SEAdams711
Member
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Posted: Wed Oct 8th, 2008 06:14 |
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I have seen some information on where to find MP-approved milk, but none that I saw appear to be lactose-free. I can handle cheese okay, just can't do milk or yogurt or anything "stronger" without taking Lactaid pills. Anyone know if there are any options for those of us who are lactose-intolerant?
Let me also say that I just discovered the MP online last week while searching for some alternative to Prednisone, which thankfully I haven't been prescribed...yet. My doctor wants to start with anti-malarial drugs soon, and I'm not even sure I want to do that either. So here I am. In reading and researching here, I'm slowly finding all the information I need to be an informed patient and advocate for my own health. However, there is a lot of information here and it's a little overwhelming, but I'm so glad I found it!! 
Just to give you a little background on me... I'm 38, married, with one child who is 2.5 years old. I developed a lesion on my left cheek near my ear in about 2004, which started out like a pimple that eventually got scaley. Have another in my left ear canal that behaves very much like the one on my cheek. Two years later and after the birth of my son, I finally went to a dermatologist to get diagnosed, fearing cancer. After two biopsies, diagnosis was granuloma, possible sarcoid. Perhaps I should be thankful that I was nursing an infant at the time, and due to his allergy to cow's milk and his adversion to any other option, I nursed for 20 months and there wasn't much they could really do except inject locally with cortisone every 4 weeks like clockwork. Helped a little, but the lesion still grew. Chest xray came back okay. Never got my eyes checked at that time. Dermatologist's office ticked me off and I went untreated for a year.
Recently developed some other symptoms including shortness of breath (unlike wheezing or asthma), which I knew to be on the lookout for, got rightly scared and started making appointments again. Eyes are fine. Dermatologist injected cortisone locally until records from other dermatologist could be sent over. Saw new internist (not on the MP doctor's list, unfortunately) and now have appt with Quest Diagnostics for bloodwork Oct 9th which includes ACE but not vitamin D. Need to make appt for chest xray. Full physical scheduled for Oct 24th and will discuss results of all tests. I am still pretty functional right now, but fear if I don't take action very soon that my health will decline, and I have a little boy who's counting on his stay-at-home Mama to be there for him. I can handle food restrictions, as I had to give up certain foods while pregnant and even more while nursing. The slathering of sunscreen and covering all skin and wearing dark glasses however will be MUCH harder for me. I have very oily skin, I live in northern Virginia which can get kind of steamy, and I'm already night-blind as it is! And how do people handle following the MP with little kids at home? Seems like many are house-bound for many months.
Anyway, at least there is a doctor on the MP doctor's list whose office is closer than my current internist, and less than 5 min drive from home. I am certain many are not nearly as lucky.
Sorry for the ramblings...
Thanks!
Susan
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Starting to avoid vitamin D
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SEAdams711
Member
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Posted: Wed Oct 8th, 2008 18:49 |
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My current internist, who is not on the MP list of doctors in my area, suggested I get a flu shot because of my asthma and also a tetanus shot, because it's probably due. I am scheduled to see her on October 24th to review my blood tests (scheduled for tomorrow), chest xray (need to schedule), and for a full physical. I plan to go with printed info on the MP, mainly because I know she has at least one other patient with Sarc. If she is unwilling to participate, I'll go to the doctor from the list. But I digress...
After reading a post by kermy about his tetanus shot, I'm leary of any shots/vaccinations. I remember reading something about this. Pardon my brain-fog and lack of grasping information (which has only worsened since I was pregnant 3 years ago), but I seem to recall something about the bad stuff being too small to be filtered out in shots and vaccinations. I know I read it here somewhere, but that's about all I could really comprehend. The rest was like reading Chinese.
Any advice would be greatly appreciated.
Thanks!
Susan
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Starting to avoid vitamin D
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Julia
Advocate (on leave)
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Posted: Thu Oct 9th, 2008 17:51 |
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Hi Susan,
You may have read it in Should I get the flu shot?
One member says the MP cured her lactose intolerance As I don't live in your part of the world, I don't know what milks you have available; maybe a US Advocate will have more info.
By the time you've clothed every inch of skin apart from your face, you don't have too much 'slathering' of sunscreen to do! Light sensitivity
Your son is young enough not to worry whether mama plays with him inside or outside, just so long as she plays with him!
Some introductory reading, in case you haven't found it yet...
"What is the Marshall Protocol?"
Simple Explanations
Sarcoidosis
D-metabolites tests
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
Please ask any further questions here at your own personal thread.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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SEAdams711
Member
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Posted: Thu Oct 9th, 2008 18:18 |
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Julia,
Thank you for the information! I will definitely try to read all of it before I see my internist on the 24th and print out all that she might need.
Wow, MP curing lactose intolerance?! Wouldn't that be wonderful! I've dealt with that for, gosh, over 20 years!
One other question... I know everyone is different and responds and reacts differently to the MP, but I thought it better to ask than not. Is there any data on people who've only had noticeable Sarc symptoms for a few years and the amount of photosensitivity they experienced on the MP? Just trying to get an idea how bad it might be fore me. This is my biggest worry in starting the MP, for right now anyway.
I'm eager to read and learn more about the MP and go to my internist educated and prepared.
Thanks!
Susan
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Starting to avoid vitamin D
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Julia
Advocate (on leave)
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Posted: Thu Oct 9th, 2008 18:52 |
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You're right that it's a bit unpredictable, but see Photosensitivity.
Have you read Suggestions To Get Your Doctor On Board With the MP?
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Always consult a physician
Essential Info; FAQ; Julia's story
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SEAdams711
Member
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Posted: Thu Oct 9th, 2008 18:55 |
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Hi Julia,
Thank you, I'll add both to my list of required reading!
Thanks!
Susan
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Starting to avoid vitamin D
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SEAdams711
Member
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Posted: Wed Oct 15th, 2008 04:29 |
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Just a few questions that crossed my mind today, as I'm trying to restrict my vitamin D.... (slow-going, I might add!)
Bread: Other than making my own, what are my options? Are there any breads out there that I can buy that are okay?
Ice Cream: I noticed that some ice cream is okay as long as it doesn't have egg yolk in it. If the ice cream has milk as an ingredient, wouldn't that milk possibly be fortified with vitamin D? I know one would have to check the vitamin A levels to guesstimate whether it's fortified or not. Just curious about foods with milk as an ingredient.
Lactose intolerance: Seems like I saw on someone's signature that s/he takes Lactaid. Is that okay on the MP? Any luck finding any lactose reduced/free milk that is not fortified? I did a quick search on the internet with no luck.
Light bulbs: I read somewhere on the sites that someone found really low wattage bulbs, like less than 40w. I went looking at my local grocery store (Wegmans) and didn't find anything lower than 40w that would fit my lamps. Granted, a grocery store is probably not the best place to look for that sort of thing.  Any suggestions on where to buy? Brands to look for?
Lux meters: In reading other people's posts, I've seen that people are listing the lux level in their homes. In doing a little online research, I'm guessing I would need a lux meter to check mine and adjust accordingly before I start the MP. I noticed there was a range of prices and types. Any brands/models recommended?
Still working on reading all the links that Julia was so very kind to post. 
Thanks in advance!
Susan
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Starting to avoid vitamin D
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SEAdams711
Member
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Posted: Wed Oct 15th, 2008 04:43 |
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I forgot a couple!
Yellow #5: I think that's the one I read about. I can't find it now. Is that avoidance for food stuffs only? or other products as well? I have a body wash with yellow #5.
Antibiotics and pain killers: What are the antibiotics used in the MP? I'm allergic to Penicillin (anaphylaxsis) and I seem to recall having some negative reaction of some sort to sulfa but I can't remember what the reaction was. I am also allergic to Aleve (hives and swelling around the eyes) but have no problems with Advil.
Thanks!
Susan
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Starting to avoid vitamin D
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Julia
Advocate (on leave)
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Posted: Wed Oct 15th, 2008 17:08 |
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Please see I'm allergic to an antibiotic on the Protocol. Is there a substitute?
Lux meters are not essential, but if you want to be certain of your artificial light level, they can be bought at major electronics stores, and also online.
Ice cream should only be an occasional treat, due to its sugar content. Use the vitamin A check to be sure it isn't made with fortified milk.
I'll ask one of the US advocates to help with your other questions
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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SEAdams711
Member
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Posted: Wed Oct 15th, 2008 17:40 |
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Thank you Julia!
I read the link you provided I'm allergic to an antibiotic on the Protocol. Is there a substitute? Other than saying, "Beta-lactams antibiotics, like penicillin, can kill some Cell Wall Deficient bacteria..." I didn't see any other mention of the actual MP antibiotics by name.
I don't really consume ice cream much anyway due to my lactose intolerance....just curious about milk as an ingredient in general and that was the first example that came to mind.
I'm so glad I am already accustomed to reading labels, thanks to my 20yr lactose intolerance and my son's previous severe milk protein allergy (anaphylactic reaction no less, which he thankfully outgrew). I think as long as I can remember what all to look for, I'll be fine.
I'll have to read the lux link when my sick toddler isn't melting down.
Thank you for forwarding my other questions to a US advocate.
Take care,
Susan
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Starting to avoid vitamin D
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Aunt Diana
Advocate
| Joined: | Fri Oct 26th, 2007 |
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| Posts: | 78 |
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Offline
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Posted: Wed Oct 15th, 2008 17:55 |
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Hello SEAdams,
In answer to some of your questions
Bread: I know some people recommend Ezekiel breads, I myself will eat whole wheat, rye or pumpernickel in moderation. There is one brand of bread in the freezer section that has no folic acid. It's called "Le Petit francais" and comes in two baguettes or 10 mini baguettes. I love it...it's better than bakery french bread..
Light bulbs: best place I have found for low watt bulbs: hardware stores or Home Depot
My lux meter is LTT Lutren LX100...I bought it on line for (I think??) around 45 dollars
I know nothing about Lactaid. I buy Horizon Organic without D or stick to cream or !/2 & 1/2. By the way...I east quite a lot of cheese....I'm careful to read label for hidden D but if the Vitamin A is 6% or less and there is no "d added" it most be okay, because my D levels have been <5 for a few years.
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| ABC of MP| MP Stories| Bacteriality|
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Julia
Advocate (on leave)
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Posted: Wed Oct 15th, 2008 18:05 |
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As far as I know we have a few members who use Lactaid, but it's best if you ask your doctor.
The MP Phase 2/3 antibiotics are not made public, in case some folks would try to go too fast and end up in hospital  But the link I gave you reassures you that you will most likely be able to tolerate the MP abx, even if you didn't before
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Always consult a physician
Essential Info; FAQ; Julia's story
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SEAdams711
Member
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Posted: Wed Oct 15th, 2008 18:26 |
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Aunt Diana - Thank you so much for responding! I don't have much problem with cheese, and I've been eating Sorrento's Stringsters reduced fat string cheese for some time now. Today I checked the label: 4% vit A per serving. Yea! I'll check for Le Petit Francais at my store. I love carbs (probably too much, as bread is a weakness), so going low carb will be an adjustment. I'm not too concerned though. I had to give up a long list of foods while I nursed for 20 months. I know that this too shall pass and one day I'll be able to eat in moderation whatever I might have missed while on the MP. I'll also check Home Depot for lower wattage light bulbs once my sick toddler is well enough to get out of the house.
Julia - I thought that might be the case.
Any info on the yellow #5 (if that's the correct one to avoid) in non-food items such as body wash?
Thanks again ladies!!
Susan
Last edited on Wed Oct 15th, 2008 18:27 by SEAdams711
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Starting to avoid vitamin D
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Julia
Advocate (on leave)
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Posted: Wed Oct 15th, 2008 18:44 |
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I shouldn't think the amount of dye you're going to absorb through your skin while washing is likely to be a problem, but if you're concerned, find a wash with more natural ingredients
Have you seen our study members' informal website MP-Lifestyles.org? Non-members can read a lot of it, but not post. There's a discussion of non-D items that might interest you.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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