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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Posted: Thu Aug 14th, 2008 11:46 |
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Sjogrens, hypothyroid, fatigue, eyes red & itchy, anxiety, bad foot cramps at night, 20yrs hot flushes, itch at mastectomy scar, hair loss; recently chronic cough, panic, itchy torso. Testing because my youngest is invalid R.Arthritis, 2nd & 3rd child 20 years mental illness (not found in other relatives).
-The date the blood was drawn
17/7/2008
-Which lab did the tests?
form says "dhm" drawn at consulting room medical practice in Sydney Univ. student union building
-Was the 1,25-D sample frozen for shipment?
Yes
-How long have you been avoiding foods with vitamin D in them?
supplements 3 months, fish 2 weeks
-How long have you been avoiding sun/lights?
gradually reduce now, usually prefer shade to sun [except winter sun on bare back for back-ache]
-List all meds, supplements (both prescription and OTC) you have been taking and why.
was on minimal dose thyroxin, did not renew prescription pending change to MP aware doctor.
1-2/week capsule 200mg rutin,citrus bioflav.150mg,Mg oxide ~70mg, vit.B6 10mg; relief bad foot cramp when lying down.
-When and for how long have you taken prednisone or any other immunosuppressant in any form?
not sure what is; took variety antidepressants 1970 to ~1990, took tamoxifen 1990-~1995 after breast cancer
-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?
took multi-vit. & min. off & on decades, not continuous, not high end dose
same for omega 3, primrose oil, occasionally tried other OTC [co-Q 10 when afford][ginkgo a few years until cuts/scratchs bled to excess]
-Were you taking Benicar when the sample was drawn?
No
-Were you taking an ARB or an ACE inhibiter when the sample was drawn?
No
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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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 18:07 |
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Sallie Q,
Please include your test results for both D metabolites (look for numbers 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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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Posted: Fri Aug 15th, 2008 02:51 |
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thankyou Janet,
25-D tested
33 nmol/L
my doctor noted "[US units] = 13.2"
1,25-D tested
57 pmol/L
I think that = 23.36 pg/ml
looks fairly normal to me after reading time on site.
But my doctor thinks I may well benefit from MP and would not need to be on it for even 3 years
Below may be more appropriate to some other discussion (I am still a www beginner, so slow getting around site)
I am interested in possibility of CWD bacteria in a daughter with serious mental health issues
I would not be able to persuade her to test calciferols even if I pay for it.
I expect I could get my son to get -D tests, again will have to pay for it, but he would be interested, although I doubt his ability to sustain any protocol. He is, however, extremely intelligent, so I can't dismiss out of hand.
My youngest daughter could do MP if she could live nearby. I'll ask her to look for a lab that can test. I believe her nearest MP doctor is Scottsdale Az.,that may be a bit hard to get to (crippling R.A). She may not be able to come back and do anything here.
thx again
S.
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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P.Bear R.N.
Research Staff
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Posted: Sat Aug 16th, 2008 05:24 |
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Sallie,
I see nothing in your clinical picture to justify this low level of 1,25-D. (23.75pg/ml) Extremely low levels (below 15pg/ml) suggest a severe viral infection such as AIDS or hepatitis.
Although levels above 12pg/ml represent a dominant Th1 inflammatory response and disproves a dominant Th2 response, the population average is 25-29 pg/ml and it is above-average 1,25-D levels (hypervitaminosis-D) that cause many troublesome symptoms.
The population average is 25-29 pg/ml. It is above-average 1,25-D levels (hypervitaminosis-D) that cause many troublesome symptoms.
A level above 12pg/ml represents a dominant Th1 inflammatory response and disproves a dominant Th2 response.
High levels of 1,25-D inhibit the conversion of vitamin D into 25-D resulting in a low level of 25-D. Your 25-D of 13.2 ng/ml is low for someone who has only been avoiding ALL sources of Vitamin D two weeks. This suggests that your actual 1,25-D is high and the measurement of 23.75pg/ml is a false low. The likely reason is sample mishandling.
Your diagnosis and symptoms may 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?
As your 1,25-D lab may well be in error, You have the option to retest (which isn't necessary unless Doc insists) or to do a therapeutic probe which is our recommendation.
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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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Posted: Wed Aug 20th, 2008 00:24 |
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Thank you P Bear
1,25 @23.75 seemed low to me also.
Re viral infection
Chance of exposure to AIDS vanishingly low.
Had hepatitis of mixed origin (alcohol and contraceptive pill) at least 40 years ago.
However I am at present ill with a virus type diarrhea
Temperature went up to 100F/38C yesterday.
While temp. rising, had nasty twinges most joints & dull but very unpleasant ache lower back.
My blood sample was a month ago, I assume there was no viral infection that far back..
I would have trusted the sample testing, have reason to believe they know what they are doing as have done D-tests for others with MP interest.
Will discuss with doctor 
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Posted: Wed Aug 20th, 2008 01:13 |
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Dear Nurse/Advocates
I went back to the <what is a therapeutic probe> link as this par. Intrigues
"The interesting thing about this protocol is you can give it a test run-- knock some D out of your diet and restrict your light, all for very little cost-- and you will get a strong hint
in weeks (not years) about your body and its disease process." Dogster
since D-test 17 Jly
I have reduced (not eliminated) light where I am in house while awaiting doctor discussion of further tests on thyroid.
Had stopped fish and fish oil, got food D-list and stopped those (substituted rice bread for wheat bread – I handle it better anyway)
External exposure: Have only brief walks ~5 minutes in day twice each week apart from early morning and late afternoon excursion.
Exception : last weekend had an unusual amount of time out and about during full daylight (late winter sunny day).
Dogster said strong hint,
so I wonder could following current illness be produced by inadvertent partial probe?
day 1. Temperature 100F/38C ; nasty twinges most joints & dull but very unpleasant ache lower back.
day 2. Virus type diarrhea. both days unable to eat.
Can someone get a temperature rise from being on MP?
thank you for advice
S
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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P.Bear R.N.
Research Staff
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Posted: Wed Aug 20th, 2008 08:42 |
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Sallie, It would be difficult to determine if you have a virus or are having reaction to "mini"probe. Fever can be a part of immunopahtologic response; and so can nausea. Ideally one would use Benicar and Mino for a real therapeutic probe. Even the best lab can sometimes make mistakes.
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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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
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Posted: Wed Aug 20th, 2008 09:32 |
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thanks to P.Bear, Janet and others
not to mention Dr Marshall
for all your hard work
I'll have to make a list of questions, there are so many issues that crowd the mind and jump forward like those annoying pop-ups on some sites.
Many of my questions I found addressed before I came on-line, some from reading discussions on topics that intrigued me; some questions seemed more appropriate to sites to which I do not have the right to post.
Will do read only for a while and talk it over with my doctor. Really appreciating double meaning of patient. LOL 
Not sure I'll apply to research site even if I start MP, as not yet sick with anything 'serious' in conventional terms. Rather leave resource to someone whose doctor seems to be floundering now I'm seeing fish LOLA
anyway have confidence in my doctor's ability and interest, 'bye for now.....Sallie
noted
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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