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alinanjeffinyacolt
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Posted: Thu Oct 16th, 2008 04:49 |
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Another thing that makes ya go hmmm. Recently my wife gave birth to a premature baby. She came in at 21 weeks with contractions and dialated 2-3 cm. They suspected infection. She held on to 27 weeks and 6 days. and gave birth to a 2lb 5 oz baby boy..(doing well).. Right before birth we finally gave permission to do a amniosytesis..It is a good thing we didnt do it back at 21 weeks when they wanted to..cuase the test came up positive for infection.(they would have terminated) They have been trying to identify the type of bacteria responisble but have been unable to find or to culture it....hmmmmmmmm.......it now has been 2 weeks and no positive culture growth...all they know what there was a insane amount of white blood cells and low amnio glucose levels. ....They also suspect it was a very slow growing infection for her to hold on so long. They mentioned cwd plasma. but that came up negative.
...in another thing that makes you go hmmm moment...in early septemeber they came out with a new study on premature birth they have concluded that most cuases of what is known as x factor prematurity..is know known or suspected to be a unknown infection in almost every case. disputing previous information.
. In even a another hmmm moment I started positing on a premmie website and noticed a posting on sarcoidosis..And noticed a large number of poeple chiming in..that they too had been diagnosed with this rare condition..as a matter of fact a VERY large number of postings...for such a small group the odds of having so many sarc patients are astronomical.
If you all know my story I was dx with sarc 22 years ago..Now I am a bit sick again and can not get a diagnoses. they dont even believe me that I once had sarc. I made the mistake of mentiioning morgellons..and now Im catogorized as a chronic complainer. I cant find a doct near portland that will help that is in network.om the mp I have a infection and I know it. sores in the mouth, lumps under skin ect.
alinanjeff at MP site.
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Dr Trevor Marshall
Research Team
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Posted: Thu Oct 16th, 2008 21:47 |
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You might want to review the new paper from Dave Relman's group "Microbial prevalence, diversity and abundance in amniotic fluid during preterm labor: a molecular and culture-based investigation"
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0003056
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alinanjeffinyacolt
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Posted: Fri Oct 17th, 2008 03:41 |
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| Thank You dr marshall. Interesting when we finally did agree to the amnio. (which ended up being 10 hours before she went into labor) They asked us to be part of a study..We had to sign all these papers and agree to commit the placentia to science ect. I guess there trying to develop some new test to identify some markers. to try to make the amnio obsoulete. Some rapid test for infection. It is interesting to note that when we were in there at 21 weeks and they told us they though she had a infection and we should abort or induce. It was some of the stuff I rememebered from your website I remembered about slow growing bacteria. That made me stop and ask them not to induce but wait and see what happens...she ended up holding on for almost 7 weeks after that. So indirectly you are responsible for our baby being alive. I knew I have a long term, smoldering, persistant, undiagnosable infection. Its not something a doctor has told me it is just something I feel. I somehow thought in the back of my head I passed this to my wife....and I ended up going against the doctors and told them she had a slow growing infection...They gave us a 10 % chance of making it as far as we did. The head doctor after she gave birth started talking about it must have been some slow growing organism....and bingo here I am back looking at the MP> I have never done the MP cant find a doctor..too tired and working too much to look...but for now somehow dosing high levels of vit c..seems to help............thanks
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Julia
Advocate (on leave)
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Posted: Fri Oct 17th, 2008 23:00 |
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Jeff,
Congratulations on the successful birth of your son! 
For his sake and your wife's, if not your own, you need to get your health sorted...
too tired and working too much to look
If you are indeed experiencing a sarc relapse - and that's the most likely explanation of your symptoms - you're only going to get more tired, and eventually you won't be able to 'work too much'. Your health is more important even than your job.
Can't you persuade your doctor at least to order D tests? Then you could set out to find an MP doc with a greater degree of certainty.
Suggestions To Get Your Doctor On Board With the MP
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Always consult a physician
Essential Info; FAQ; Julia's story
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alinanjeffinyacolt
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Posted: Sat Oct 18th, 2008 03:24 |
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| Thanks I went to the doctor today...and told him about my tounge killing me.and my jaw pain.and mentioned I was diagnosed with sarc in 1987, He did a exam a proclaimed it was all caused from stress from the birth of my baby. Im ready to get a new job so I can start fresh. (truck driver) get a new network and try again.. I have seen everybody at this clinic now. Its in my records..I am a complainer..im done. I tried to get my orginals back from them,,,but they said by law the doctor can retain the orginals and I may have a copy.
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Julia
Advocate (on leave)
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Posted: Sat Oct 18th, 2008 09:36 |
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Jeff, you are not alone and you're not 'done'. You have another battle to fight, but you will win the war, as so many MP members have before you. How sad that a trained doctor can seriously proclaim that being a new dad can give you lumps under the skin and make your tongue sore! If only they would say "I haven't a clue" sometimes  Time to try a new doc - are there any on the list for your area?
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Always consult a physician
Essential Info; FAQ; Julia's story
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alinanjeffinyacolt
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Posted: Sat Oct 18th, 2008 17:56 |
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| what I meant by done...is done with this clinic..with the family medicine clinic...guess theres a joke around town amoung the the doctors...that the FM in family medicine stands for fatal medicine.
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alinanjeffinyacolt
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Posted: Thu Oct 23rd, 2008 06:31 |
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Every time I get a little bit sick with my low level persistant illness I end up back here.
Intersting everytime i think im ready to persue the MP I do some minor things like cut my sunlight exposure, limit dietary vid d, Increase vit c. Get more sleep and eat immuno enhancing food...I feel better again and forget all about..It if wasnt for that sarc dx 17 years ago.. I might have forgot about ya all along time ago. Why are there so many so sick.. But I can make these minor changes and feel better...but it is so like clockwork I know dr marshall is right...I can feel myself get sicker the longer i stare at the computer screen, or a day or two after sunexposure. Am I just a ticking time bomb ? or am I just lucky not to be as sick as others..or could it just be something else all togeteher ? I did have my d metablites test per dr marshall recommendation...but I never saw the results.. My fam medicine GP doctor just told me the test was negative.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
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Posted: Thu Oct 23rd, 2008 09:35 |
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I'm not sure where you are in the world, but I believe in most countries you have the right to get a copy of your test results. I'd encourage you to do that, and post the results as described in How to post your D-metabolite Test results.
Most doctors don't understand the significance of the D levels, and many labs list reference ranges for them that are far too large, so being told that they are 'normal' means very little.
Does sarcoidosis go away without treatment?
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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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