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caroldeleah
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| Joined: | Mon Jan 21st, 2008 |
| Location: | Maine USA |
| Posts: | 50 |
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Posted: Fri Jan 25th, 2008 18:42 |
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| My teen daughter has been diagnosed with chronic idiopathic uveitis and is using the following meds: alphagan, timolol, azopt, predforte, q-var(asthma), levothyroxine, methotrexate (Monday only-20mg), folic acid (1mgx6days). Will any of these meds affect the results of the D Metabolite tests? Is it necessary for both tests to be sent to Quest? Do both tests need to be done on the same day? My doctor ordered the Vitamin D Hydroxy to be done at a local lab (done 1/22/08) because our insurance would pay for it. At the same time, a Western Block (Blot?) test was done. He gave me a written script for the Vitamin D, 1,25-Dihydroxy to take to a facility that would send it to Quest Labs. Quest lists a facility in our town who sends labs to them, but as it is now, I would have to pay the $236 Quest charges. Do you have any suggestions for other coverage of this cost. Thanks, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Sat Jan 26th, 2008 04:05 |
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Carol,
Reporting medications at the same time you submit D test results on the study site is what is normally done. Although it would be worth it to you to read these links too:
Medications to Avoid While on the Marshall Protocol
SARCOIDOSISlink
EYE INFLAMMATION and Th1 diseases << Adequate eye protection will be particularly important for anyone with eye inflammation.
Also, no matter who does the 25-D test it generally comes out fairly reliable. The more touchy assay that has most value for being correctly done at the beginning of the MP is the 1,25-D test. Quest is recommended for accuracy, and the drawing lab must follow Quest's instructions to the T or your money spent on the test (little or lots) will be wasted.
As for the cost of the Quest charges, you alone can decide what you have already paid in medical bills for your daughter that has not got her well. Compare to Quest costs and MP treatment costs (very low compared to numerous test/treatment regimines that are far less effective to help one return to wellness).
Along with a copy of the Phase 1 guidelines, you may want to review:
D-Metabolites tests
Normal lab ranges
Which diagnostic tests do I need?
What tests do I need to monitor my progress on the MP?
What to include in your preliminary test result reports.
Policy regarding posting lab test results
Children on MP has Information for parents who have questions about using the Marshall Protocol with their children.
CHILDREN & MP Information and Links
Can children be treated with the Marshall Protocol?
Best to you and your daughter Carol--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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caroldeleah
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| Joined: | Mon Jan 21st, 2008 |
| Location: | Maine USA |
| Posts: | 50 |
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Posted: Mon Jan 28th, 2008 19:40 |
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I am in urgent need of contact information for occular immunologists or ophthalmologists who are pro MP, who I may contact, and/or who also would consider a consultation role for my docs. I have been unable to obtain information by using the links on the MP website. My 17 year old has chronic idiopathic uveitis and is on MTX and folic acid (not good, I know!!) Would anyone tell me whether it would be OK to take my daugher off folic acid while on the MTX ? I am so appreciative of Dr Marshall's sacrifical contribution to the world of medicine--my world. I do not have internet access at home and wonder if it is possible to communicate in any other way -- I am limited to the amount of time on the computer at the library. So far, I have copied reams of info and taken it home to read. Thanks, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Julia
Advocate (on leave)
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Posted: Mon Jan 28th, 2008 20:58 |
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Carol,
To find a doctor in your area who might be willing to prescribe the MP, go to REQUEST FOR DOCTORS LIST. There are no expert MP doctors yet, and most of us have to try to persuade our own doctor to 'think outside the box'. See Suggestions To Get Your Doctor On Board With the MP. Most of us have had more success with our own doctors than with specialists, who tend to think they know everything there is to be known.
It was through severe uveitis that I was first diagnosed with sarcoidosis four years ago. My doctor was wary of prescribing Benicar at first, and he just gave me minocycline, which I took in very small pulsed doses like the MP. My eyes began to heal even before I started the MP proper, and now they're fine 
Please ask all your questions here at your own personal thread. Post test results on the main site in the Preliminary test results forum.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Jeannine R.N.
Research Staff
| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 50 |
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Posted: Tue Jan 29th, 2008 06:37 |
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Hi Carol,
Just wondering if you recieved my email and the emails from the MP members that also contacted you via email? They were sent to you at your private email address.
Thanks,
Jeannine
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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Dr Trevor Marshall
Research Team
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Posted: Tue Jan 29th, 2008 07:08 |
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Jeannine, (and all)
Thanks for trying to help Carol. Reaching out to folk who don't have Internet access is our next great challenge. Maybe we need to loan out some of those new XO laptops 
I don't see the medical establishment in the USA changing at a fast enough rate to save the sight, and lives, of the current generation of patients. That is one of the reasons we are starting to focus our growth Internationally during 2008. But there must be a way to help the folk who know they need help. I am open to any ideas
..Trevor..
Last edited on Tue Jan 29th, 2008 07:11 by Dr Trevor Marshall
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caroldeleah
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| Joined: | Mon Jan 21st, 2008 |
| Location: | Maine USA |
| Posts: | 50 |
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Posted: Tue Feb 12th, 2008 18:17 |
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Hi Jeannine, I looked back in my e-mails and found yours. I have been so intense on gathering information (copying it off and taking it home to read) that I skipped over it too quickly. I am so sorry! Thank you taking the time to send me all that information. I appreciate your concern, as well as Dr Marshall's so much. A nice computer was given to us a couple of years ago (Windows xp), but in 2001, my husband was dx with NHL, and so because of financial limitations, we chose that having internet access not be a part of our budget. The story of how I learned about MP is nothing short of miraculous, and so I look forward to seeing how we will be able to comply with all the MP-Phase I guidelines, including having internet access!! We are trying to be creative!! Considering my family's history of uveitis or iritis (4 family members in 3 generations), a sister, mother and niece with psoriasis and a brother with crohn's, as well as the information that has been given us by our current group of physicians, my daughter and I believe that MP is the ONLY hope. She has read much of the material I have brought home and believes, along with me, that the cause of her uveitis is bacteria. I will do my best at navigating the website in the proper manner. Hopeful, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Jeannine R.N.
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| Joined: | Wed Oct 17th, 2007 |
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Posted: Tue Feb 12th, 2008 18:33 |
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Hi Carol,
I am so glad that you and your daughter think the MP is the right step for you. I also believe in my heart that it is the right step too.
I am glad you found the information! Let me know if I can help you out with anything else.
I also know that Margo who has a daughter with uveitis and who is on the MP was also trying to contact you via email and private message. Did she get intouch with you?
Hugs to you and your daughter
Jeannine
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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caroldeleah
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Posted: Tue Feb 12th, 2008 19:03 |
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| Jeannine, I believe I have read all of Margo's correspondence. Thanks, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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caroldeleah
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Posted: Mon Feb 18th, 2008 18:27 |
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Has the FDA Office of Orphan Products Development yet approved the Foundation's application for designation of Benicar in the treatment of Sarcoidosis (request filed Sept 29, 2005)? I understand that this approval is not necessary to use Benicar for MP.......Just wondering in case my doctor should ask. Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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caroldeleah
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Posted: Mon Feb 18th, 2008 18:48 |
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| My brother, suffering from Crohns, is a long-distance trucker 5 days a week. He has had bowel surgery twice and now has a nodule on his lungs possibly from the use of Remicade. He is interested in learning more about MP. Is there anyone with a similar profile? Or any encouraging words?
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Julia
Advocate (on leave)
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Posted: Mon Feb 18th, 2008 19:38 |
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Carol,
As far as I know, there is no designation of Benicar for sarc yet
See Crohn's
Jeanne, KenC
It would be good if your brother could read the website for himself. Members who do their own research tend to do better on the MP!
Please keep all your questions here in your own personal thread by hitting the reply button
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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caroldeleah
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| Joined: | Mon Jan 21st, 2008 |
| Location: | Maine USA |
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Posted: Wed Feb 20th, 2008 19:05 |
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Just wondering......If two in my family qualify and we decide to begin MP and we darken the windows and limit interior light, how might that physiologically affect the other members of the family ( 3 children 13 and younger and dad with NHL) who may have Th1 inflammation but not on MP? Could that cause them to experience an immunopathological reaction? I hope it is not a silly quesiton. I don't mean to be paranoid. It seems a relevant question, considering many of our health issues, after informing myself through this website. Thanks, Carol
P.S. Did I click on the correct "reply" to ask this question?
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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caroldeleah
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Posted: Wed Feb 20th, 2008 19:08 |
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| Thanks, That is what I have been telling by brother. Just thought I'd give him a little head's up for when he gets off the road next time. Your point is well taken and I'm glad to pass the message on to him. Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Julia
Advocate (on leave)
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Posted: Wed Feb 20th, 2008 19:38 |
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Carol,
You got the 'reply' right! You can actually hit any reply button on the thread and it will put your new post at the end.
Your question about the rest of the family reacting to light limitation is a very valid one. Please see Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar? I must admit I compromised a bit on light in the home in order to give the family a more normal life. But then I was working part time, so I never eliminated light as much as some members. You have to find what works for you.
See What are the latest recommendations regarding sun exposure? and Light Sensitivity.
Cutting vitamin D in the family's diet will probably have an effect too. Take it slowly and carefully for them, as they won't have the help of Benicar.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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caroldeleah
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Posted: Wed Feb 20th, 2008 20:02 |
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I buy bulk oatmeal, and 7 grain cereal at our health food store. Are these ok to have for breakfast as a hot cereal?
This is a quote from the MP site: Grains (wheat, barley, rice, etc) do not contain VitD but may be supplemented with folic acid. Whole grains are preferrable. I'm sorry, but I have to ask if someone could please elaborate on the meaning of this.
Can I make my own yogurt with raw milk (unfortified) or is the use of raw milk not recommended?
Where can I obtain the Droste Cocoa which Dr Marshall recommends? Thanks a lot, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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caroldeleah
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Posted: Wed Feb 20th, 2008 21:04 |
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| 13 months ago my husband had a lung biopsy for relapsed NHL (2001). The verbal report was a different kind of lymphoma (transformed) and after being treated (CHOP/R),he feels no different. If the pathologist did not check for sarc then (1/07), is it too late to ask for it to be done now? His case has continued to puzzle the oncologists. I am going to request a copy of the pathologist's report. Thanks, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Julia
Advocate (on leave)
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Posted: Thu Feb 21st, 2008 18:48 |
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Carol,
I don't see why it would be too late to test for sarc, after all it won't have gone away. What about asking for D-metabolites tests? A number of sarc members have had false cancer diagnoses.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Julia
Advocate (on leave)
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Posted: Thu Feb 21st, 2008 19:09 |
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Carol,
For a discussion of raw milk, see Bacteria In Cows' Milk May Cause Crohn's Disease (scroll down). It would appear that raw milk should be organic to be safe.
I think the grains quote means that grains themselves don't have vit D or folic acid, but when used for breakfast cereals, bread, etc, they tend to get 'fortified' along the way... whole grain products are healthier, and also tend not to be fortified as much... but always read the labels!
Oatmeal should be okay. When you say 7 grain cereal, do you mean a processed breakfast cereal? You would need to read the label for any additions such as folic acid.
Droste Cocoa
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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caroldeleah
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Posted: Thu Feb 21st, 2008 20:49 |
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| Thanks, Julia, I have placed a call to the pathologist lab and learned that the specimens are still available, even back to 2001!! This is good news! Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D 9(12/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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