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Deedee
Member
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Posted: Thu Aug 14th, 2008 01:43 |
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Briefly list your diagnosis or symptoms. (around 2 lines at the most).
-The date the blood was drawn 7/31/08, 4 days after diagnosis sarcoidosis
-Which lab did the tests? Quest
-Was the 1,25-D sample was frozen for shipment? I don't know.
-How long have you been avoiding foods with vitamin D in them? I had not been at time of test, but now I am.
-How long have you been avoiding sun/lights? No, I had not at time of test, now I am.
-List all meds, supplements (both prescription and OTC) you have been taking and why. Niacin, Red Yeast, CoQ10, metformin for lipids, which greatly improved over several years. Magnesium, Vit D --physician's advice. Idoine to promote tyriod wellness. stopped all supplements 7/21 except metformin, which I weaned off entirely by 7/28. Still taking natural hormones HRT.
-When and for how long have you taken prednisone or any other immunosuppressant in any form? About 18 years ago took for a short time due to out of control asthma and bronchitis, which has almost entirely resolved during the last 10 years after avoiding milk products, dust.
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil? Several months prior to 7/28 surgery and diagnosis took 1000 IU for several months. Prior to starting my Vi D 25 was 23.
-Were you taking Benicar when the sample was drawn? NO
-Were you taking an ARB or or an ACE inhibitor when the sample was drawn? NO
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu Aug 14th, 2008 18:12 |
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Deedee,
Please include your recent test results for both D metabolites (look for numbers on your lab results followed by pg/ml and ng/ml) to post with the answers to the above questions.
Thank you--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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Deedee
Member
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Posted: Fri Aug 15th, 2008 01:06 |
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Gee, I am sorry I forgot the most essential info.
Diagnosed 7/28/08 by mediastinoscopy for lymphopathy found on MRI for breast lump (breast fine.) Surgeon told me today that there were a lot of swollen lymph nodes but not that much firbrosis. I am ready to start the MP Monday after my eye inflamation resolves more.
7/1/2008 after almost a year of 1000 Vit D per day (I missed a few months when I ran out.)
Vit D 25 54 ng/ml
Vit D 25 OH, D3 50 ng/ml
Vit D OH, D2 4 ng/ml
7/31/2005 1 week without Vit D
Vit D 1,25 53 pg/ml
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Prior to vit D supplement and diagnosis
4/12/2007
Vid D 25-OH, total 24 ng/ml
Vit D 25-OH, D3 24 ng/ml
Vit D 25-OH-D2 <4 ng/ml
Notable:
High Calcium in 2001 and I had one other high Calcium but then all calcium tests were then normal for the years following. Also Anion Gap was 16 when the calcium was high. 2005 Calcium 9.8
Have you had your study people clear their Xrays of lymphopathy?
All my doctors, family and husband are supporting me with the MP and husband is signing up for waiting list too. He has had sarcoidosis for 25 years.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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P.Bear R.N.
Research Staff
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Posted: Sat Aug 16th, 2008 05:09 |
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Deedee,
Your 1,25-D was elevated at 53pg/ml three years ago(the population average is 25-29 pg/ml). It was 2.53sigma high and based on population studies, 99.45% of the population would be expected to have a lower number.
Your 1,25-D was above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness. Your sometime elevations in Calcium levels strongly support this.
Your recent 25-D of 54ng/ml is very high and reflects your reported vitamin D supplementation. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
Your D-tests, diagnosis and symptoms indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
Benicar can help with eye inflammation, as can protecting ones eyes from light.
That your husband has sarcoidosis is a strong indication to me that we really are dealing with an infectious condition. The odds of a husband and wife both having sarcoidosis are stunningly small according to the old official analysis; but the fact that a number of spouses were both found with the disease in the last large study is further evidence of infectious nature of disease in my opinion. Many people have reported return of lymph nodes to normal size as they progress through the MP, but there can be exacerbations during treatment that are associated with immunopathology.
Most supplements and many medications must be avoided on the MP.
Our clinical study is temporarily closed to enrollment. As vacancies occur, we will admit subjects based on an application. To obtain an application forum, please send an email to marshallprotocol2@yahoo.com with 'request MP application' in the subject line.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Deedee
Member
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Posted: Sat Aug 16th, 2008 13:53 |
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I made a typo. That Vit D 1,25 of 53 was 2 weeks ago in 2008, but I guess this would not change anything. Thank you--my husband and I have both made applications. I never got a form to fill out, which he did, so I reapplied for the application today. I thought just sending the request was applying, so I was unaware that because I did not receive a form, that I was not on a waiting list. Can you please make sure I get the form sent to me? I am starting MP next week with the Benicar and I am thankful there is the MP so I am not stuck with the "watching waiting" protocol. Watch and wait for what? To see if you go downhill and then steriods? No thanks. I am doing the MP. I have nothing to lose and everything to gain. Thank you and all volunteers for your help.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 134 |
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Posted: Sat Aug 16th, 2008 16:18 |
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--my husband and I have both made applications. I never got a form to fill out, which he did, so I reapplied for the application today
Deedee
The form is an email that you have received and can be filled now also by yourself for yourself without actually "sending for another one" unless you have deleted the first one from your inbox of course.
all best, Barb ...
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