| Author | Post |
|---|
jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3861 |
| Status: |
Offline
|
|
Posted: Sat Feb 9th, 2008 00:16 |
|
Sherry Asked
"Does it make any sense to start sending this paper to our congressmen?"
May I recommend that everyone cut quickly to their congressional aide in charge of medical issues.
Find the number of your congress rep and call, then ask for the aide. Keep it short, polite but to the point. Ask if you can email them the pdfs so they don't have to wait for hardcopy mail (anthrax scare changed how hardcopy mail is delivered to your rep).
Tell them you will call back to see what has been done about your information, and that you expect action on this issue as lives are being lost every day there is a stall.
...........
Per Oprah today I left this message, I hope she gets a chance to read it:
Re: Dr. Oz Reveals the Ultimate Checklist For Great Aging Feb 8, 2008 7:07 PM
Please pay attention to the molecular genomics of this century to unravel the truth about what is really going on with the innate immune system and the diseases of aging. In silico mathematical science (like keying in 2+2 to get 4, it comes out the same every time--only with massive computing power required for this equation) is not going to tell us anything except that the molecular receptor responsible for the human immune system responds to a very complex lock and key feedback mechanism with the steroid D's at the heart of turning it on and off.
Yes, the steroid called vitamin D is not just a little important, it is a LOT important, but throwing "vitamin" fortifications and supplements in the form of ingested D in willey-nilley as recommended by OZ actually foils the mechanism and sets up a perfect environment for pathogens to proliferate in the form of diseases that plague mankind. That means the simplistic "vitamin in = goodness out" drivel needs to stop, especially from TV clinicians that base their recommendations on anything but molecular genomics.
Please invite a real expert on what is going on with the VDR, learn about the TWO very important D metabolites tests need to be measured and why one of them is so fragile it must be handled precisely or the results will be flawed. Learn what lab has a proven track record for better success and why it isn't the one your insurance is going to pay for without your insistence, and what that means for your checkbook--and more important, your life.
Learn why animal studies can never get it right, not even with apes. Learn why animal models continue to divert your tax dollars to studies away from the real solution. Learn why Dr Oz and other medical practitioners have no clue yet about the bench to bedside transition that even the FDA director Dr Von Eschenbach told the 2006 NORD conference would change the world of medicine.
When you explore these issues, you will also learn why people with previously incurable diseases are walking away from wheelchairs and putting away their respirators and getting their life back. It all has to do with the genomic science of this century that outstrips the accuracy of opinion-swayed "emperical" studies we all risk our lives with at this time.
If you really want to tell people the truth and have the courage to do so, then you will not ignore this starting point any longer:
1. Marshall TG. Vitamin D discovery outpaces FDA decision
making. Bioessays. 2008 Jan 15;30(2):173-182 Epub ahead of print Online ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565
Available from publisher's website at URL
http://www3.interscience.wiley.com/cgi-bin/abstract/117885976/ABSTRACT
Available from PubMed at URL
http://www.ncbi.nlm.nih.gov/pubmed/18200565
A pre-print full text copy at URL
http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
2. American Academy of Dermatology fact sheet: "Myths and
Realities of Vitamin D and Sun Exposure," at URL http://www.aad.org/media/background/news/skincancer_2004_05_03_myths.html
3. "Rickets .. is not due to vitamin D deficiency but is
caused by not having enough calcium in the diet." U.S. Dept of Agriculture,
Agricultural Research Service, Available from URL http://www.ars.usda.gov/research/publications/publications.htm?SEQ_NO_115=169216
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
|
Plateletgal
Member
| Joined: | Wed Apr 12th, 2006 |
| Location: | USA |
| Posts: | 99 |
| Status: |
Offline
|
|
Posted: Sat Feb 9th, 2008 01:01 |
|
"Cher had done and article in a magazine years ago how she also had CFS."
Hi Reenie,
I just watched an interview with Cher on Entertainment Tonight. The interviewer mentioned her debilitating illness, except he said she had EBV and never mentioned CFS. 
Other celebrities who have Chronic Fatigue Syndrome are legendary film director Blake Edwards; musicians Randy Newman, Keith Jarrett and Dennis DeYoung; actors Morgan Fairchild, James Garner, Alana Stewart and Kathy Crosby; and philsopher Ken Wilbur. And of course, author Laura Hillenbrand and soccer player, Michelle Akers.
Last edited on Sat Feb 9th, 2008 01:07 by Plateletgal
____________________
CFIDS POTS MCS endocrine imbalance osteopenia 125D58 Apr07 ModPh2 Sep07homeopathic meds NoIRs 25D9 Jun07
|
ShrnHml
Guest
|
Posted: Sat Feb 9th, 2008 01:56 |
|
| Great communicating, Janet. Thanks from all of us. .........Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
|
JCB
Member in Phase 3
| Joined: | Fri Jul 30th, 2004 |
| Location: | Connecticut USA |
| Posts: | 38 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 16:30 |
|
| One of the producer/distributors in this area of "organic" milk supplemented with Vit A & D is Garelick Farms in Massachusettes (owned by Deans Food). According to their rep, they add commercially prepared D3 (contains lanolin) because "the FDA requires us". If that is the case, does anyone know off hand how distributors who do not add D3 can avoid supplementation? Last edited on Mon Feb 11th, 2008 17:08 by JCB
____________________
teenage daughter with chronic Lyme Jul 28 04 25D-23, 1,25D-60 ratio 2.8, Benicar init Sep 14 04 Mino Nov 4 04 Phase 2 Jan 25 05, Mod Ph 2 w/ C currently
|
Dr Trevor Marshall
Research Team
|
Posted: Mon Feb 11th, 2008 17:11 |
|
The FDA does not require the addition of Vitamin D, it regulates its use.
In other words, if a manufacturer wishes to add Vitamin D to their milk, then they have to do it according to the FDA rules. But they can also choose to not add Vitamin D, and several manufacturers do have product lines fortified only with Vitamin A, or with nothing at all.
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 537 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 17:36 |
|
The Homestead Creamery of Virginia says they are required to add A to anything that is not cream, half and half, and whole milk. However, they add less than 6% A. I think a company that says they have to add D just doesn't want to deal with the concerns of the public. I don't know how far they distribute; we have difficulty getting it here.
TM, haven't you said before that if all you are using milk for is to splash a little in your tea (say no more than once a day), then the small amount of D you'd get from regular milk probably isn't going to do any harm? If that's not okay, then I need to know.
Thanks, Claire
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
|
maggie weeks
Member in Phase 3
| Joined: | Fri Jan 28th, 2005 |
| Location: | Vancouver, Canada |
| Posts: | 109 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 17:51 |
|
| I have found the answer to avoiding the D in milk by drinking Almond milk and watering down Goats milk. My husband hates it but it is acquired taste. Another tip for enjoying eggs white only omelettes etc is to add some tobasco sauce to give it some zip!!
____________________
Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
|
scooker48
Member in Phase 3
|
Posted: Mon Feb 11th, 2008 17:57 |
|
I called my local Congresswoman and spoke with her aide, and used some of Janet's follow up questions.
My strategy in dealing with these people is, first of all, be very friendly. They are aspiring politicians or just fascinated with politics (aren't we all now?), and warming them up with appreciation, Thanking them in advance, etc. helps. I also laughing admitted I never tool Molecular Biology in college or graduate school. Humility helps, in my opion, to make them know you're an approachable human.
Then I used Janet's follow up words and sentences; she promised me they would try to follow up. I emphasized the quality of the editorial board for BioEssays, that it represented institutions from around the world. In addition to our own NIH, etc. And those people saw fit to publish this article. The aide got the idea...
Carry onward...
Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
|
Dr Trevor Marshall
Research Team
|
Posted: Mon Feb 11th, 2008 18:01 |
|
Claire,
If the milk is not fortified then the small amount of Vitamin D from it will not be significant, especially if you only use it in tea, and coffee. Half and Half is OK, too, as it is usually not fortified (check the box). It has more fat, but you need less of it (in coffee, anyway).
My hot chocolate mix uses a little non-fortified milk powder. Since AmericanSpice.com seems to have gone out of business, I have recently been getting this powder
http://www.frontiercoop.com/prdDisp.php?I=2852&br=&full=y
Amazon.com no longer lists it, and the price has gone up a little. Nevertheless it is good, and the only milk powder I can find which is not fortified 
ps: I empty the foil bag into a huge plastic food-container, to make it easier to handle.
|
maggie weeks
Member in Phase 3
| Joined: | Fri Jan 28th, 2005 |
| Location: | Vancouver, Canada |
| Posts: | 109 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 18:13 |
|
| Do you know if they ship to Canada.?
____________________
Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
|
Dr Trevor Marshall
Research Team
|
Posted: Mon Feb 11th, 2008 18:38 |
|
No idea, sorry
|
Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 807 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 20:36 |
|
Organic Valley has powder milk with no Vit D, buttermilk powder too. I also just found this product.
Self Stable milk with no vit D. Their pasture butter looks like it could be ok too.
http://www.organicvalley.coop/products/milk-and-cream/shelf-stable-milks/product/shelf-stable-whole-milk-1-litre/Last edited on Mon Feb 11th, 2008 20:38 by Jeannine R.N.
____________________
CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
|
Aunt Diana
Advocate
|
Posted: Mon Feb 11th, 2008 22:31 |
|
| Organic Valley also has regular pasteurized milk with no Vit. D. They also have regular milk with Vit. D so one has to be sure to read the label. Publix in Fla. carries it.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
|
maggie weeks
Member in Phase 3
| Joined: | Fri Jan 28th, 2005 |
| Location: | Vancouver, Canada |
| Posts: | 109 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 22:35 |
|
| I phoned them and they do not ship to Canada. They called me right back very impressive you lucky southern neighbours.I felt like a change from goats and almond milk, of course I can always have our half and half watered down too!!
____________________
Bartonella muscle pain weak pelvic instab neck instab Lumbar nerve demyl occip headaches thoracic pain| Clonazepam Celexa 40mg| CutD&light 5/05| BeniQ6H Oct05| 1,25D=54 25D=29/ Apr06 25D=15| Mino Nov05| Phase 2 Apr06
|
Rico
Member in Phase 3
| Joined: | Wed May 31st, 2006 |
| Location: | |
| Posts: | 220 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 23:18 |
|
I once tried diluting cream (not totally sure, but I think if it was half-and-half) at a ratio roughly 4 parts water to 1 part cream and it was not far from taste of milk...if you want to have it in cereal, for example. Then again, my sense of taste and smell aren't very good - yet! I drink goat's milk without D in it.
____________________
No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
|
Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 297 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 23:22 |
|
I've been consuming half & half in moderate amounts with no problems. D levels have been good, well under 10 for 18 months or so. 1:1 with water is a good substitute for whole milk in cooking.
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
|
JCB
Member in Phase 3
| Joined: | Fri Jul 30th, 2004 |
| Location: | Connecticut USA |
| Posts: | 38 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 23:35 |
|
In CT, among distributors of so-called "organic" milk, I have found 2 distributors of non-D3 supplemented milk-
Organic Valley (Wisconsin)
Wakefern Food Corp (NY)
and the local Stop and Shop manager has promised me he will look into carrying one of these brands and get back to me about it. We shall see. As I mentioned Garelick Farms does not have a non-supplemented product, and stated to me when asked if they could supply an unadulterated "organic" milk, that "Garelick does not care about consumers".
____________________
teenage daughter with chronic Lyme Jul 28 04 25D-23, 1,25D-60 ratio 2.8, Benicar init Sep 14 04 Mino Nov 4 04 Phase 2 Jan 25 05, Mod Ph 2 w/ C currently
|
Martha
Member in Phase 2
| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
| Posts: | 181 |
| Status: |
Offline
|
|
Posted: Mon Feb 11th, 2008 23:52 |
|
Reenie,
I saw this Oprah show as well. I just posted on the link you provided to Dr. Oz/Oprah. Hope he investigates into the MP.
Martha
____________________
Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3374 |
| Status: |
Offline
|
|
Posted: Tue Feb 12th, 2008 00:33 |
|
Great! All we can do is mark time while getting well and do what we can. And as Kathleen says, no giving up!
Eventually, someone will listen in the media. 
As for the half n half, I gave it up long ago for pure heavy cream in my morning coffee. It tastes MUCH better IMO, but maybe not for cereal.
Last edited on Tue Feb 12th, 2008 00:35 by Reenie
|
scooker48
Member in Phase 3
|
Posted: Fri Feb 22nd, 2008 20:12 |
|
I just spoke with the aide to my local Congresswoman, and she assured me my letter has been received. And...my Congresswoman is writing the FDA regarding the designation of Benicar for Sarcoidosis.
When I receive a copy of this letter to the FDA, I will let you know.
Really not much progress, but I soldier on.
Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
|
Current time is 05:58 | Page:   1 2 3 4 5 6   |
|
