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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Fri Sep 12th, 2008 04:22 |
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| Well, she doesn't need to necessarily write the copy (both she and Paul must be up to their eyebrows), but she could point out research as well as areas of her own writing where the issues are clearly spelled out. Plus, she could review what was written to critque it and to provide feedback to insure that it would not contain anything that would make it easily dismissed. That's if she is open to either idea. Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Fri Sep 12th, 2008 05:53 |
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Aunt Diana,
I think you just may be on to something here...Washington D.C. here we come! If MADD could take over the country the way it did and change laws that have to do with alcohol, why not MAVDA? It only takes getting the interest of one knowledgeable and willing politician, to get the ball rolling!
When I was about eight, my grandma thought it wise to give me daily doses of cod liver oil. Unfortunately I cannot document how long I continued this. From what I have experienced as an adult, I am (of course) extremely sensitive to fish and have connected becoming ill both times I've flared, from the level of fish I was consuming at the time. Cod liver oil was also given to my father and his sisters. My aunt died in her early 60's from lymphoma and suffered her whole life with diabetes, weight problems and was legally blind by 58. My dad has had fatigue issues for as long as I can remember and although 76, has had a triple bypass, corroded (sp?) artery surgery and is now fighting macular degeneration. Another aunt has suffered with what my guess would also be Th1 for many years. They all seemed to fight anxiety, depression issues their entire lives. Fish oil, the new subsitute for the age old cod liver oil! (Sorry, got off track there a bit with the cod liver oil fad).
Imagine what these newly campaigned cereals are going to do to the future of childrens health! As if there wasn't enough fortification already in the existing products....Consuming cereal with milk every morning for breakfast and snacks, (I know at our house cereal was a good snack when my kids were growing up). COUNT ME IN!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Aunt Diana
Support Team
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Posted: Fri Sep 12th, 2008 07:28 |
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Not only that, Deb, but you eat that cereal with milk that is also fortified with Vit. D.
I truly believe if we make it simple, stick to the one subject Vit D, and what the new research has revealed about it, we might be able to change this dangerous dogma. If no one stops it, the next generations will simply suffer more and more chronic illness resulting in a weakened nation and costing a fortune in money and suffering. This is a very serious and good cause, IMO.
We could accomplish much if we could simply educate the public at the grassroots level on this one simple topic.
I also think people are a bit more sophisticated and realize how the large companies will do and say anything to sell a product. What they don't realize is the magazines, newspapers and news programs do not substantiate what they report. There is no accountabiity anywhere for the false claims that are made every day.
As I said earlier when I suggested the reading group....I am not an organizer or a motivator...but I do have some good ideas. And I think this is one of my better ones.
Do you think we can form a small committee to formulate a plan and develop our tactics? Anyone ever done anything like this before?
(The hidden bonus would be we would pave the way to make the MP more understandable....since the Vit. D dogma is a large challenge in and of itself.)
I really think we could do this.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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jrfoutin
Member
| Joined: | Tue Aug 9th, 2005 |
| Location: | Orem, Utah USA |
| Posts: | 3846 |
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Posted: Fri Sep 12th, 2008 08:56 |
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From my personal experience of trying to expose D as the bad guy, I've seen it is not a top-level leader in the discussion, but more as a support detail. If, D, the vitamin supplement is the focus, people just don't "get it."
The "vitamin" D message is important, it is big and has certainly changed everyone on the MP's perspective, but food additives and diet is not the kingpin info set.
The important news that needs to get out is that new technologies have made the awareness of molecular level detail possible, and that there is one nuclear receptor that has far reaching kingpin power to empower the correct immune response to protect the human host from the pathogens.
You will see that Marshall's work has always included the D fortification problem set, but the recent focus is clearly on the pathogens and the molecular level technologies that show why an angiotensin II receptor blocker is a dose dependent requirement.
In reality, it takes a while to get the priority message right even if one has been on the MP for a while.
If we get the priority wrong, you know most of humanity might get the whole idea wrong and a "vitamin" perspective might rip through the popular press first. Some can get into quite a bit of trouble by radically removing that steroid from their system, so that might not be the humane thing to do. Unfortunately for all of us, the public has a very "fad" attitude about including new foods or supplements into their diet and the can easily miss the bigger picture.
There is a real danger that a nutritionist perspective alone will emerge and that will not help people to find out about the colonies of multigenomic bacteria or the human nuclear receptors that are impacted by bacteria or by enabling the disease process with D sources or other ways of shutting down the immune response (Capnine, Chlorogenic Acid... etc.)
When I march on DC (LOL.. not in the light for a long period of time) or beat down the door of the popular press, it will be about new comprehension of both the bacteria that cause chronic disease and the understanding that new molecular technologies have brought that are currently ignored, even swept quietly into an FDA file if they are included without really helping anyone there determine if a substance being brought to marketing approval process will impact a kingpin nuclear receptor in silico and in vivo.
Just something to think about.--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Julia
registered
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Posted: Fri Sep 12th, 2008 09:01 |
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| I have a popular-style heads-up fact sheet about fish oil that I wrote for my school, but I don't know how to attach it. I use Photobucket.com but it doesn't accept Word documents. Maybe if I photocopied it and put it in Photobucket as a photo...?
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jrfoutin
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| Joined: | Tue Aug 9th, 2005 |
| Location: | Orem, Utah USA |
| Posts: | 3846 |
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Posted: Fri Sep 12th, 2008 09:04 |
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Does it take PDFs?
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Aunt Diana
Support Team
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Posted: Fri Sep 12th, 2008 09:23 |
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Janet,
What I like about simply identifying the one component of the argument that is dead simple....if you position it that way. It is not complex....everyone can understand about the issue that affects them immediately and in this case I see that as every time a mother goes to buy cereal for her family. If she has the information to make an informed decision she will opt for not fortification. If we could accomplish that one little step....I think it would open the door for the rest of the discussion...that is so complex and is so above the average persons 10 second sound bit. I say we take the complexity out of the discussion....make it simple for anyone to understand and the rest will follow.
I am seeing this as a completely separate matter....one that is worthy of its own right and needs to be corrected.
Perhaps I'm pie in the sky, but this seems like it could be doable within a reasonable short timespan....a year perhaps.
Meanwhile, the MP people can be refining their tactics and their strategy but we could be trying to take one of the confusing aspects away...so people can understand why we have become vitamin d dysregulated.
I'm tired and maybe I'm not making sense and maybe this wouild be more difficult than I think.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Julia
registered
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Posted: Fri Sep 12th, 2008 09:39 |
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Does it take PDFs?
I thought it did, but it won't accept mine!
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Deb Grabetz
Support Team
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Posted: Fri Sep 12th, 2008 11:37 |
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Aunt Diana,
I think I understand where you're coming from and Janet's point is well taken from a more advanced stand. From my point of view, which is what I believe led into this discussion, this is going *overboard* by adding more vitamin D to already fortified cereal. Why not ask the questions, "How much vitamin D is too much?" and put it out there for public awareness.
Again, sadly, this is marketing, not health issues for the companies out there trying to buy into the "Big D" gimmick that is sucking everyone in. If people are not made aware of the consumption dangers that these kids are being exposed to in these cereals by someone, they will never know and we'll have more sick adults! When I read that 10 minutes of sun exposure was the daily recommended requirement for vitamin D for adults, I KNEW we had a big problem.
Deb
p.s. Julia I'd love to read this fish oil report that you speak of. My daughter, who has Th1 issues I believe, was taking 3-4 capsules a day and experiencing all kinds of neuro problems, until I found out she was taking this *garbage*! She stopped and eventually started feeling better, hope there was minimal damage done.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Freddie Ash
Member
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Posted: Fri Sep 12th, 2008 13:09 |
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HI DEB & ALL
This is Fred in WV. I also had to talke cod liver oil back in the 1940s. Remember, I had Ricketts. Keep up the posting, we will come up with something we can all do. When I tell any one about the vit-D problem I always bring up the fact that we only need 15mins per day of sun to get enough vit-D so why do we need to add more to our foods.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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magsmom
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| Joined: | Thu Aug 7th, 2008 |
| Location: | Oklahoma USA |
| Posts: | 45 |
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Posted: Sun Sep 14th, 2008 05:45 |
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| May be - onece the literature is figured out and this project moves into the promoting stage - - -we could have task force to work our local "health / fitness expos / tradeshows & other promotions" that we have in all our communities. Picture even getting "Pseudo" support of this subject by actual manufactures of MILK - those that is who do make their milk without the "added D" - - Picture handing out the pamphlet along with a "sample" of natural milk that is not "D fortified" - - - This could even be done at local 'health food' stores - - who are supportive of alternative "non mainstream' voices. Feel free to critique as I may really be herxing ~ Magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Aunt Diana
Support Team
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Posted: Sun Sep 14th, 2008 06:20 |
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I really like this idea....but the more I think about it, the more I realiize what a huge effort this would take. Soon the MP will be better recognized and accepted by mainstream.... The MP is really the more important issue. Maybe our work is already done. It will be much easier to take on Vitamin D additives, once the MP has been validated by mainstream medicine. After all, we have to get the medical establishment on board first. That is the most critical issue now.
I have really enjoyed thinking and talking about this, however. Last edited on Sun Sep 14th, 2008 06:22 by Aunt Diana
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Deb Grabetz
Support Team
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Posted: Sun Sep 14th, 2008 13:30 |
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Hi Aunt D-
No doubt the MP is bringing light to the Vitamin D issue and will continue to do so. I follow a few sarc sites, just to keep up with information that is being posted, should I say *theories* that have no substance and a lot of doom and gloom! But, beginning to see others take note of the Vitamin D issue.
I find my sensitivity rise though, when it comes to children. Cereal is the main breakfast staple for American children. I know when my daughter went to Australia, she mentioned that the cereal aisles there were nothing like ours here in the states. (Note: This was long before I knew I had sarc or was educated about the consequences of excess vitamin D). Could anyone confirm this? I would love to see some feedback from MP members from other countries as to fortified cereals. Are they as common as we see here in the states.?
There is some very interesting reading, just by googling vitamin D toxicity. Here is a clip from Mayo Clinic:
Vitamin D toxicity can result from regular excess intake of this vitamin, and may lead to hypercalcemia and excess bone loss. Individuals at particular risk include those with hyperparathyroidism, kidney disease, sarcoidosis, tuberculosis, or histoplasmosis. Chronic hypercalcemia may lead to serious or even life-threatening complications, and should be managed by a physician. Early symptoms of hypercalcemia may include nausea, vomiting, and anorexia (appetite/weight loss), followed by polyuria (excess urination), polydipsia (excess thirst), weakness, fatigue, somnolence, headache, dry mouth, metallic taste, vertigo, tinnitus (ear ringing), and ataxia (unsteadiness). Kidney function may become impaired, and metastatic calcifications (calcium deposition in organs throughout the body) may occur, particularly affecting the kidneys. Treatment involves stopping the intake of vitamin D or calcium, and lowering the calcium levels under strict medical supervision.
I read documentation like this, along with all of Trevor's work and research from the MP and continue to realize what a problem we have here in the U.S.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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natalie17
Member
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Posted: Sun Sep 14th, 2008 13:50 |
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Deb,
From what I gather speaking to US friends etc, over here there are generally more healthy cereal options available (healthy as in, less sugar-filled ones). Some of the cereals I've heard of existing in the US I don't know how people eat for breakfast.. they sound like desserts?
For the most part though our cereals are all* fortified with folate. I'm not sure I've ever seen one fortified with D (though I haven't been to a supermarket in nearly 2 years). I certainly haven't seen 'D' cereal advertised though... I've only just started to see milks being advertised with added D, even though I know they existed before.. but my impression is the dairy in the US is mostly fortified with Vit D, where as here it's mostly not.
*a few organic etc ones aren't.
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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
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Aunt Diana
Support Team
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Posted: Sun Sep 14th, 2008 23:34 |
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That was an interesting quote from the Mayo Clinic. Looking back to my early days of Lyme disease, I exhibited just about every one of those symptoms.
Lately, not only are cereals and more and more cheese products fortified with Vit. D, but it is a frequent drumbeat on certain ads on TV...."it is thought that Vit D may lead to better breast health" or some such drivel.
It is practically impossible to buy rice that has not been fortified with folic acid. There is only one store in a ten mile radius of me that carries one line amongst 15 or more others. Yes, we have millions of choices but there is very little to differentiate the products, such as rice.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Freddie Ash
Member
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Posted: Mon Sep 15th, 2008 00:26 |
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HI ALL
This is Fred in WV. One other thing about vit-D is, as far as I can tell from everthing I have seen that there has not been in reduction in heart disease or cancer since they have been adding all this vit-D to all the foods and such. The only thing they can say is that the ones with cancer has low vit-D when they do the blood tests. But they are looking at it in the wrong way. To me it only shows me that Dr Marshall is correct in the fact the bactiera uses it up and suppresses the immune system so it can work with ease. But no one wants to believe this but us MPers. That is what we have to focus on I think. I try to do that when I talk to any one about the vit-D. In fact the cases of heart diseases and cancers have gone up over the years, even more because of all the added vit-D. But it seem like no one is reporting this figures. All they want to do is sell us more vit-D in any way that they can.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Carricol
Member
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Posted: Mon Sep 15th, 2008 01:13 |
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Having read most of the recent posts on this matter, I tend to agree with jrfoutin but want to take it a step further. Before anything can happen the conventional paradigm must change. Conventional medicine needs to recognize that all of these chronic illnesses are not caused by something mysterious or in the case of autoimmune disease, the body attacking itself, which never made any sense to me anyway. Once conventional medicine recognizes that these diseases are caused by L-Form bacteria and things will change. They will begin to recognize that all these diseases are in one way or another caused by the bacteria or side-effects of the immune system attempting to attack the pathogens. What looks like autoimmune is really collateral damage resulting from the immune system attacking the stealth pathogens. Then it no longer makes any sense to suppress the immune system with sterroids, but to support the immune system in its effort to fight the pathogens. It then becomes not much of a leap to recognize Vitamin D as a sterroid. Right now conventional medicine looks at people with chronic illness and notes a high correlation with low 25-D. When Vitamin D is added symptoms improve and they wrongfully conclude that a Vitamin D deficiency was causing or at least contributing to the problem. Conventional medicine needs help in recognizing that their model is flawed. They need to see that what is really going on is that Vitamin D suppresses the immune system so that it is no longer effictively attacking the pathogens. The apparent improvement is illusory and is in reality simply a reduction in immunopathology. It may provide temporary improvement but helps set the person up for a day of reckoning down the road. I think that the focus needs to be on getting conventional medicine to recognize the cause of these illnesses. Once that happens the recognition of the role of Vitamin D will slowly change.
Last edited on Mon Sep 15th, 2008 01:17 by Carricol
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Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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Julia
registered
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Posted: Mon Sep 15th, 2008 01:15 |
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I think I've got it - Photobucket is now accepting my jpeg file... can you read this?
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carol
Support Team
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Posted: Mon Sep 15th, 2008 06:35 |
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Chiming in late here.....
I agree that we have to accept our limited sphere of influence when it comes to the vitamin D issue, until the MP becomes more generally accepted.
But building on what Deb said, we can do our best to help our immediate family avoid being poisoned with vitamin D. My children are young adults, but they both appreciate the importance of steering clear of D fortified foods. My son drinks alot of orange juice, but he's careful not to buy the D fortified brands. Both kids now prefer the flavor of organic full fat milk, the only kind you can get that is not D fortified.
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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Scarlett
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| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 35 |
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Posted: Mon Sep 15th, 2008 14:31 |
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Carol,
I so agree with you as to alerting our families. My niece's daughter was born 3 months premature and was in NICU first three months of her life. Abby, my great-niece has alot of medical issues and just this weekend I was talking to her mommy about D and the ill effects, including cereals now being D fortified. My niece was very interested and as she is a x-ray tech has some medical background. If she listens, tells one person and so on we have at least informed a few. That is how and where it all starts.
Also, maybe not place for this question but am curious. If D is not a vitamin (because it is produced by body) why do we still call it Vit. D here on web site? Should we change that to also get public informed? Just wondering.
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia, initial (2/08) 125D48, 25D58, 4/18/08 25D37, MP-3/3/08, PhaseII-3/28/08 Ambien, NoIRS, low lux home & work, lt exp r/t commute
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