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Rico
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Posted: Sat Sep 13th, 2008 13:31 |
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Ed, I don't know how you could do the protocol "independently" without a doctor - don't you need a doctor to prescribe the MP meds?
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Edmund1953
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| Joined: | Sun Apr 6th, 2008 |
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Posted: Sat Sep 13th, 2008 22:33 |
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Dont worry.. I have no intention of attempting to get myself tangled in any lawbreaking.  ..
Rico.. it's a simple thing to get my doctor to prescribe Minocycline..and not so hard to get him to prescribe Olmetec at 40mg per day, which I fully realise - is not the MP required dosage, so I wouldn't do this. But even without having any blood pressure issues, my GP could prescribe. The whole Olmetec issue becomes tiring in this instance.
Regards, Ed (sorry i havent figured out why i leave a large white space under my message)
Place your cursor at the end of your typing and hold the delete button on your keyboard until it has eaten up the white space - mod.
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Edmund1953
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Posted: Sat Nov 1st, 2008 02:46 |
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I was surprised to hear that my Sarc specialist and her team think of Sarcoidosis as a "rare" disease. This truly bothers me given what I have learned here and know to be true.
Is this thinking mainly due to the lack of recognition about hypervitaminosis d..or the blood testing which the general population 'normal values' are thought to be. Subclinical issues maybe?
Why would they describe it as rare - and yet agree that multiple sclerosis and Sarc look so similar under the microscope?
She is doing some mri's and ct's but i dont like the sound of a lung biopsy. Im right to refuse this aren't I?
Regards
Ed
Last edited on Sat Nov 1st, 2008 03:00 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
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Posted: Sat Nov 1st, 2008 05:30 |
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Ed,
The NIH Office of Rare Diseases defines a rare disease thus:
A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States.
By this standard, Sarcoidosis is indeed a rare disease at present. But you're right, if all the Th1/'autoimmune' diagnoses were grouped together, that could not be considered rare.
Biopsies do indeed come with risks. The study site says says: Physicians like to have a tissue biopsy to diagnose sarcoidosis, and this is largely due to the fact that the common treatments for sarcoidosis are so fraught with side effects that biopsy proof is needed to justify their use. (from Symptoms of sarcoidosis)
CT scans also come with risks:
A patient undergoing an abdominal CT scan receives over 50 times more radiation than in a standard X-ray. A person who receives two scans is bathed in as much radiation as if he stood two miles from ground zero at Hiroshima. (from What is the best way to assess lung function?)
You need to weigh up the benefit you will gain from each test against the risks it carries.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Edmund1953
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Posted: Sat Nov 1st, 2008 20:18 |
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Josh....your reply is right on the mark in answer to my queries - a great help.
Regards
Ed
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Edmund1953
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Posted: Sat Nov 29th, 2008 16:57 |
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I found a doctor less than two hours by train from me who is "MP savvy" but..she isn't accepting new patients until after the new year.
Sooo..meanwhile, I am staying loyal to the vit d free diet and took a peek into 'what foods and meds to avoid' area. I couldnt find any mention of whether peppermint oil/ menthol is contraindicated or has steroidal properties...if anyone has a minute to let me know.....it has cooling properties and muscle relaxant, oxygenating properties is my understanding ? .. but i know spicey things are not helpful to maintain low 1,25 such as garlic, which i thought may be similar to peppermint? as my unproductive cough is eased a little with mints. Let me know if Im way off centre with this.
Regards to all
Ed
Last edited on Sat Nov 29th, 2008 17:17 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Edmund1953
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Posted: Tue Jan 6th, 2009 02:16 |
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| My doctor tells me that my 25 d is down to 1. The highest result was 35 about a year ago. He's concerned should I be? Last edited on Tue Jan 6th, 2009 02:18 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JoshR
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Posted: Tue Jan 6th, 2009 12:49 |
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That does seem rather low, but low 25-D in itself is not something to worry about. Vitamin D is actually a hormone, and the body regulates its levels. If it is downregulated, it is downregulated for a reason. It does point towards you having a Th1 disease, but you already know that. If you check 1,25-D, which is the active form, you'll most likely find that it is too high.
Also note that there is quite a bit of error inherent in the 25-D test when the level is low. See Variations inherent in 25-D test results.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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