I was originally diagnosed with sarcoidois in 1984. Lymph nodes were enlarged in the neck. They went in and did a biopsy. The Dr that did the follow up after the results came back showed me my chest xray and commented that the lymp nodes between my lungs were enlarged abit and the biopsy showed sarcoidosis. He said I might want to get a chest xray in 5 years or so but it wasn't any thing to worry about.
Well about 4 years ago I started suffering from insomnia and fatigue. Then my blood preasure started going up. Went to see a Dr. and he said the fatigue and insommnia were due to the high blood pressure. Put me on Lysinpril and sent me away.
Well the blood pressure went down but the fatigue and insommnia didn't go away. Went back to the doc and he said that the blood presure medicine was making me fatigued and that was normal. Well I actually felt worse on the med but I suffered along like a good patient for a year and a half getting slowly worse.
Went to see a different dr and he wanted me to do a sleep study. Yep I had sleep apnea they said. Tried to use a CPAP machine and thought I was going to die each night. Couldn't breathe with it on. This is when I really realized how really bad my breathing was getting . Thought I was gonna have a heart attach if I had to do any thing more than a slow walk.
Went back to the doc and we did an angiogram , ekg and some blood work all of which were normal. Thats about the time Bernie Mac died and it jogged my memory of so long ago that I had that same thing. Told my doc about it and it set a fire under him. If he had looked at my record he would have see it cause I've gone to the same clinic since I was born.
Anyway he did a chest xray and it didn't look good. He put me on prednisone 40mg a day and sent me to the polmunary doc. he added Advair 500/50 twice a day did a cat scan and said the upper lobes of my lung were destroyed from scar tissue and I had granuloma forming else where. We did blood work and all the standard test. Had a broncoscope done and more biopsies. Had my eyes checked and an echocadiogram done and will have a thaleum scan on the heart next week.
Started doing some research and didn't like what I saw about the current lline of treatment and outcome of it. they say the sarc even reinvades into a transplanted lung if you survive the recovery from that. So I ran across the MP about a month ago. Did a lot of midnight web searching and I'm 95% sure about this. Just need to find a doc. One of the other members has put me on to a lead about a doc he uses right here in my home town but he is full up with patient.
I did get the cardiologist to switch me to 20mg benicar a day . I know that is not enough and doing the steroid probably makes it inaffective but it's a start. My polumanary doc got really agitated when I told him about the MP. Said he wouldn't do any thing unethical and would not do the MP treatment unless there was a clinical study. He even went so far as to say that I might want to find another doc. He tried to tell me that minocycline had a lot of side affect even though he said he might want to add methlytrexate to my regimine.
Even though I am breathing better now, the steroids don't make me feel all that good and I don't like the potential side affects from the long term use.
At this point I don't really have any specific questions but any comments are welcome. Currently I an agressively seeking information and a doc who is informed and maybe has some experience with MP.
Hi. So at this point I still haven't found a Dr willing to do the MP . Incidentally I'm down to 15mg Prednisone and 250/50 advair now. My pulmanary test indicate I'm up 46%. That 67% of expected. So at what point will I relapse??? The Dr don't know.Just wants to put me on methlyltrexate if that happens which sounds like som e nasty stuff.Had to take him articles about Pentoxifylline in treatment of sarcoidosis and PENTOXIFYLLINE AND DOXYCYCLINE AS A STEROID-SPARING articles to get him to think.
The one Dr that I found via this site and another member say's that he may have to rethink this cause it came to his attention that Trevor Marshal is not a medical Dr .Besides he says there is no data or published test to back things up.
Thats the same thing my pulmanary Dr said. Where's the data , where is the studies. Although he did agree with me tht most of the "conventional treatment" is sort of all experimental. And the data and studies are small.
So the question is where is the data so I can show a Dr how well the MP works. And frankly I'd like to see the data. After working in a laboratory for many years I know how important that data and statistic are to some people.
Dr Marshall in one of his presentations gave numbers for sarcoid, lupus, diabetes and a couple of other problems. I think it's on the presentation to the AAEM, or maybe the bio21 presentation or maybe both.
Tom Peters presented results on for other diagnoses in his Porto presentation.
The Bio21 page has links also to the AAEM presentation.
____________________ sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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