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jennyb
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Massachusetts USA |
| Posts: | 14 |
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Posted: Fri Jun 13th, 2008 14:58 |
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Hello I had a biopsy done of my lung and it came back unspecific for sarcoid, so they have to do a biopsy of my lymph node. Doctor says it can be lymphoma or lupus. So I have to wait another 2 weeks, i can't wait to get a diagnosis after being sick for a year and not knowing or getting any answers as to what is wrong.
The pain first came on almost 2 months ago now, when my left ear was blocked and had sharp pain in my left side of the neck and arm too. So I assume that it's the lymph nodes, or could it have been a nerve? But there is no infection in the ear, doctor said it is mild otiits with externa eczema. I had acupuncture the other day with a deep tissue massage and after that the pain was throbbing in my ear and neck... so it could be a nerve. So anyway the doctor still thinks it is sarcoid but I will have to wait to get the biopsy of my lymph node now... And hopefully get some treatment!!
Jennifer
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Julia
Advocate
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Posted: Fri Jun 13th, 2008 19:29 |
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Jennifer,
You don't need another biopsy.
This is what I said to you before, and the others agreed:
1. serum D-metabolite tests are a good tool for measuring systemic inflammation. (these are vastly safer than biopsy)
2. Biopsy is invasive, risky, unnecessary and expensive.
Sarcoidosis patients have difficulty healing from wounds or surgery, as our immune systems aren't functioning properly. This makes surgery more risky than for others.
You should ask your doctor what difference the results of the biopsy would make to your treatment. Are you being offered anything better than steroids if it proves positive? Steroids are only going to make you feel better temporarily, before their side effects make you more miserable than you were before. Meanwhile the bacteria causing your disease are partying 
Which diagnostic tests do I need?
Your doctors will not know about doing the D tests - you have to ask. Dr Marshall's discoveries and treatment are still new; it takes years for these things to filter down to the doctors.
Meanwhile, keep reading in the MP 'library'. You need to know all you can about the MP before you can approach a doctor about it. There are no expert MP doctors yet.
Here are some links to essential MP information to get you started, if you haven't found them yet:
Sarcoidosis Facts
"What is the Marshall Protocol?"
Simple Explanations
FAQs and the ABC of the MP
Is the MP an applicable treatment for my disease?
Success Stories
Bacteriality - a blog by one of our members
Please ask any further questions here at your own personal thread by hitting the reply button. If you can't see your thread, click the green 'My Account' button at the top of the page, and it will give you links to all the topics you've posted in 
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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jennyb
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Massachusetts USA |
| Posts: | 14 |
| Status: |
Offline
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Posted: Tue Jul 22nd, 2008 15:12 |
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I have been diagnosed with sarcoidosis. I had my vitamin d tested and it's 21.6... it is low. now i have been getting a lot of muscle cramps and twitches in my legs. i have not started on anything yet. I am getting confused about the vitamin d, should i be taking a vitamin d supplement to bring it to the normal level? Is that why i'm getting cramps now?
[Moderator note: post merged with your own thread for continuity. Please ask any further questions here at your own personal thread by hitting the reply button. If you can't see your thread, click the green 'My Account' button at the top of the page, and it will give you links to all the topics you've posted in. Thank you. ]
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Julia
Advocate
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Posted: Tue Jul 22nd, 2008 23:32 |
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Jenny,
Please read Simple explanation of vitamin D metabolism. Did you get your 1,25-D level tested, or only the 25-D? If you just ask a doctor to check your vitamin D, it's usually only 25-D that's done. If your 25-D is 21.6, you need to get it down, not up!
I know there's a lot of reading to do about the MP and the science of disease, but it really is essential if you want to get well. One whole 'shelf' of the MP 'library' is taken up with articles about vitamin D. The link Vitamin D-Basic Information is a sort of 'index' to them, and gives you links to them all. You probably need to take it a little at a time and not try to read the whole 'shelf' at once 
You might find staying out of daylight would help the cramps and twitches.
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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