Sarcoidosis Support Group

purplecat,

I don't know if you go by this "username" of "purplecat" because your cat drinks purple Kool Aide or had purple paint spilled on him/her but that sounds silly and that may be your situation. Anyway, regarding this Marshall Protocol, someone started a topic on this way back in March 18, 2007. I replied on posts #4 and #7 I believe. Like back then and right now, there's this little "TRIVIAL SITUATION" in my family in that I have to help my wifee' to work on doing a paperoute. Income from this paperoute help pays for "TRIVIAL ITEMS" such as rent, electric bill, etc. In doing this as you know, a person is expose to rays of the sun and even on cloudy days some rays get through anytime of the year. A person on this program ARE NOT TO BE EXPOSED TO THE SUN, PERIOD, except when going to doctor and then the person be wrapped up like an Egyptian mummy.
gary

LOL! No, I go by purplecat because my name is Catrenia (pronounced Katrina) and my favorite color is purple. My brother is 27 and has sarcoid of the lungs. I've found a doc to do the MP but he won't do it unless a pulmonologist is on board as well. The problem? My brother's pulmonologist scoffed at MP and said they don't recognize it in the medical profession. Needless to say, he's not high on my list of people that I like. :) My search is still on for a pulmonologist.

Thanks for your reply. :)

I first heard of the MP a few years ago and was very hopeful. But as I dug deeper I found some disturbing information. I can't say that it is total bunk but I am skeptical. For one thing "Dr." Marshall has a Doctorate in Electrical Engineering. NOT medicine. Second the regimen is SO STRICT it would take a Buddhist monk to follow it correctly, which makes it hard to complain that it doesn't work when there's a good chance that you didn't do it correctly. The last time I checked, it hadn't yet actually cured anyone because nobody had been on it long enough. But that was a couple of years ago so I can't say for sure. Last, Marshall was involved in some sort of corporate trouble in Europe a few years before developing his cure. That was for an entirely different kind of business. Now that could be unrelated and unfair to use as evidence against the protocol, but I have to question how someone who isn't a pharmacologist in any official way, can find a cure that nobody else has been able to find for years. AND do it in a matter of a couple of years of "amateur" research at best.
If you are looking for an alternative treatment I think you'd be better to consult a Homeopathic Doctor. A serous one, you need to do some research, don't just go to your nearby New Age shop and ask advice. I know there's a good one up in Montreal And I'll look up the one I found in NY if you can't find one near you. You might also look into Quercetin. It's a Vitamin Supplement that some recent research suggests might help with Sarcoidosis. DOn't take my word, look it up. I'm not saying it's a cure. There's just some interest brewing. ANother thing you might do is set up an automatic news search at Google. I get an email every week with anything that turned up about Sarcoidosis in the news. That's how I found out about Quercetin. Good Luck!

Thank you GlennW. I'm just so distraught and desperate at this point. I just want to make my little brother well. I will definitely research Quercetin (sp?). Thanks again. :)

Is your brother on Prednesone? How long has it been that he's being treated? Your Pulmonologist may be doing a perfectly fine job.

When I was first diagnosed my breathing capacity was at 50% (like I only had one lung) It took over six months of prednesone but I came out breathing back up at over 80%. Prednesone isn't fun, but it has worked in beating back the sarcoid a few times now. I've been in and out of remission several times. Still, I count myself lucky. I've had complications elsewhere as well. Kidney stones and pancreatitus to name a couple. Still, I consider myself "healthy" as these have been isolated episodes over the past 15 years. Day to day I'm fine.

How is your brother doing? Are you having his heart checked?

P.S.

I should clarify something. I haven't seen a Homeopathic doctor myself. I recently looked into them at the urging of my girlfriend. She sees one for her Vertigo and Fibromialgia. She swears by them and does appear to be doing quite well. It seemed worth looking into for myself. Frankly, I'm out of work right now and can't afford it. But I thought I'd pass the suggestion on in case it works for you.

I've thought of homeopathy. I'm actually getting started taking classes to become a doctor of naturopathy. :) Anyway...the prednisone is not helping at this point. He's on 20 mg (recently upped from 15 mg) along with Methotrexate. He's only breathing at 21%. He is on oxygen 24/7. It is so hard to see someone I love suffering like this. So hard.

purplecat,

I think you was trying to be silly and have your "username" as purplecat. Well if you wasn't, it still sounds silly just like my "username" as well. That's okay though, everybody needs silly stuff once in a while.

I think all said and done, if I didn't have all these years of having a prior history of Peptic Stomach Ulcers, I would have to take Prednisone myself. Sometimes I just don't care if I was on this Prednisone and develop a bleeding stomach ulcer. Death from that scenario will happen in a month if this bleeding doesn't stop. Well this is just the apathy attitude of mine that comes and goes.

I'am going down to Ann Arbor V.A. Hospital tomorrow morning to see the neurologist there. Nothing new other than sometimes having a "foot drag" from my left leg. Cramps in the lower legs, and perpherial neuropathy going on as usual.

purplecat, sorry to come across in my depressed mode. It is just I'am discouraged about alot of things.
gary

My brother will be starting an alternative program in December. I've been looking into the Mineral Miracle Supplement. Read more at www.mmszone.org. Don't give up Gary. I refuse to believe that my brother won't get well. I believe in miracles. Take care.

-Catrenia

I am wanting more info also. I did leave the name for my dr to check into this and tell me what he thinks. I would like more info on it also, alot of it makes sense to me.