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Deb Grabetz
Advocate
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Posted: Mon Jul 28th, 2008 14:03 |
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V-
Wow, I did not have a clue this could be my Sarc!  No wonder things feel so achy. Yet thinking about this, there is a lot of tissue in both these areas. I appreciate the enlightment!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Toni D
Advocate
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Posted: Tue Jul 29th, 2008 06:54 |
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Hey Deb,
Just to share, every part of my body is lumpy! With the weight loss and loose skin I can feel the nodules, lumps everywhere I touch. Some are small, some larger, but they're definitely there. I can just imagine how long the tissue remodeling is going to take as this is truly systemic. Anyone who believe sarc only affects one, two organs, skin ...they're sadly mistaken. Thank God we know the truth and the truth is setting us free .
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 1,25D=38 07/07 25D=4| BeniQ6H 09/27/05| ModPh2 07/06; Ph 2 09/07|
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Freddie Ash
Member in Phase 3
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Posted: Tue Jul 29th, 2008 15:11 |
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HI ALL
This is Fred in WV. When I tell some one about Sarc or any other TH1 disease, I tell them that it will effect everything and do anything to you. I tell them that your teeth and hair can fall out. Even twitching in all areas of your body. That is one of the reasons that I now think, "WHAT OTHER DISEASES??"
All these lumps in my legs I always told the doctors that it was caused by the Sarc. A daughter-in-law has fibro and she even has these in her legs.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Deb Grabetz
Advocate
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Posted: Tue Jul 29th, 2008 21:47 |
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Toni D wrote: Hey Deb,
Just to share, every part of my body is lumpy! With the weight loss and loose skin I can feel the nodules, lumps everywhere I touch. Some are small, some larger, but they're definitely there. I can just imagine how long the tissue remodeling is going to take as this is truly systemic. Anyone who believe sarc only affects one, two organs, skin ...they're sadly mistaken. Thank God we know the truth and the truth is setting us free.
Hi Toni, Good to hear from you! Good point about this disease being systemic and yet how lightly it is taken by most docs. When I went to Cleveland Clinic, where they are Sarc "specialists" right? The doctor looked at my chest x-ray, which by the way was only a small piece of my Sarc pie-- and offered methotrexate and a "we don't know much about Sarc, it will just settle in it's own time".
So here I am bedridden basically and thinking how much da** time do you people think I have--talk about feeling distraught! Knowing from a recent dx, that I had this now well over 20+ years. Had I not already been researching the MP, I would have left CC a total lunatic. Luckily, I had my folder full of MP research with me, that gave me the courage to walk out of his office with a "plan." Agreed, thank God we know the truth!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Freddie Ash
Member in Phase 3
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Posted: Wed Jul 30th, 2008 01:18 |
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HI DEB
This is Fred in WV. I have been to the Cleveland Clinic several times since Jan 2001. I was sent there to see about a heart transplant. Thank God they did not do that but did 4 bypasses. Well when the cardiologist found out I had sarcoidosis he sent me right over to see one of their lung doctors. I saw an interviewer. He ask a lot of questions and I suprised him, I not only answered all of his questions but told him even more that he knew about sarcoidosis. Then I saw the lung doc and after talking to him for a little while he said, "YOU KNOW MORE ABOUT SARCOIDOSIS THAN WE DO." This was more than two years before I ever knew about the MP.
Also, the Cleveland Clinic got $2million to study Saracoidosis some time after that and I reminded my doctor that did my bypasses both times about them getting this money to do the study and I could not even get into that study. I do not think they wanted any one to be there that may know more than them. I take time to tell this story to show the "EXPERTS" know very little about these diseases and do not want to learn anything new that might CURE any one.
Remember, we are all in this together and I am pullling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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marion villa
Member in Phase 3
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Posted: Wed Jul 30th, 2008 02:09 |
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I read all the thread, I had lumps in all the body, thay appear and disappear,and hurt with the pressure, at first I made a surgeon friend of mine, to remove them twice, but they came again, so I desisted. with MP thay never came again until today, not the holes that took months to heal, my skin look well, but when I got thinner,I recovered my old face withour roundness, but as a baloon which you took the air from it, I got WRINKLED and very annoyed about that....
My avatar is now about 20 pounds heavier than me
Any recipes to erase face wrinkles??? I wil appreciate them 
Last edited on Wed Jul 30th, 2008 02:11 by marion villa
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Kas
Member in Phase 2
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Posted: Wed Jul 30th, 2008 03:53 |
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My doctor asked a very interesting question at my last visit.
She wandered how an MP patient would be treated for anaphylactic shock if epinephrine, the usual drug, cannot be used.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Dr Trevor Marshall
Research Team
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Posted: Wed Jul 30th, 2008 04:17 |
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The guide for ER staff is at
http://AutoimmunityResearch.org/ER.pdf
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 18901 |
| Status: |
Offline
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Posted: Wed Jul 30th, 2008 04:18 |
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from the ABC of MP
FAQ What do I need to know about epinephrine?
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| Cut D/exp July04| NoIR Aug04 Comm Beni| Sept05 off Thyroxine| CLICK ABCofMP
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
| Status: |
Offline
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Posted: Wed Jul 30th, 2008 08:07 |
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Chalk this up to brain fog, but can someone tell me whether I need to worry about consuming plain yogurt if it says pasteurized milk (whole, skim, etc.) and it does not mention vit D and the vit A content is 6% or below? Same for sour cream, etc. I'm eating cheese and only worried about whether Vit D and A is mentioned; so I'm supposing it is the same deal. I've read the MP listing on foods recently, but I can't seem to keep this in my mind and the woman who is coming to care for me keeps asking me to check out whether I can consume plain yogurt.
Thanks, Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Kas
Member in Phase 2
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Posted: Wed Jul 30th, 2008 13:39 |
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Thank you, Trevor and Barb.
Trevor,
Your link won't open on my PC. Is it only available to medical professionals? I need to be able to take it to my gastro guy before my colonoscopy. He is concerned about my being on the beni with my uber low BP and has requested a consult with me before the Aug 18 procedure. I would like to give him a print out of all the relevant information to get me through this safely whilst still on the Benicar. They have agreed to my taking pico-lax instead of drinking gallons of awful tasting stuff, but have warned me to take in copious amounts of fluid to aid the kidneyss.
Heck, I sure wish I could skip this, but having it awake is not an option I even want to contemplate! Many years back, I had a gastroscopy without sedation, and it was worse than giving birth!!!
Thanks again.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Deb Grabetz
Advocate
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Posted: Wed Jul 30th, 2008 14:26 |
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Marion,
From your picture, I only see a young beautiful woman who is trying to regain her health....Wrinkles? What wrinkles!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Deb Grabetz
Advocate
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Posted: Wed Jul 30th, 2008 14:54 |
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Freddie Ash wrote: HI DEB
This is Fred in WV. I have been to the Cleveland Clinic several times since Jan 2001. I saw the lung doc and after talking to him for a little while he said, "YOU KNOW MORE ABOUT SARCOIDOSIS THAN WE DO." This was more than two years before I ever knew about the MP.
Also, the Cleveland Clinic got $2million to study Saracoidosis some time after that and I reminded my doctor that did my bypasses both times about them getting this money to do the study and I could not even get into that study. I do not think they wanted any one to be there that may know more than them. I take time to tell this story to show the "EXPERTS" know very little about these diseases and do not want to learn anything new that might CURE any one.
Freddie,
Yes, you are so right! It is no wonder that we have learned to trust our instincts with "what is actually working", such as we all continue to realize from being on the MP!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Wed Jul 30th, 2008 15:28 |
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Kas, the file is an Adobe Acrobat PDF file. You will need to have the free acrobat viewer installed on your system.
http://www.adobe.com/products/acrobat/readstep2.html?promoid=BUIGO
Make sure you select the FREE version, don't give them any money
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Kas
Member in Phase 2
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Posted: Wed Jul 30th, 2008 15:57 |
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| Thank you so much.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Kas
Member in Phase 2
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Posted: Wed Jul 30th, 2008 20:07 |
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Deb,
The Cleveland Clinic sarc clinic is nothing short of useless.
When I was sent there in 2003, with suspected lymphoma in the spleen, I was was sent to the sarc clinic. A pulmonary specialist there insisted there was nothing wrong with my lungs, even although I queried whether I could have sarc. She poo- pahed it and refused to do a fine needle biopsy, even although the young fellow agreed with me about having it done. So, I was sent on my way back to oncology, who were only to happy to remove my sarc - filled spleen and ignore my lungs and liver ( and probably kidneys, too).
Six weeks later, I got the call to say no, I did not have cancer, I did indeed have sarc. I called the Cleveland Clinic and asked to speak to the sarc specialist, but she refused to take my calls and never called back. To this day, they have never returned my PET scan, which I paid for. I was apparently the topic of a lecture given by the surgical dept - big whoop! If I was a wealthy person, I would have sued the pants off her, but I am not, I do not live in the US, and more than likely, the Cleveland protects its own I would have lost the case. All I can say, is stay away from the Cleveland Sarc Clinic - they know zilch!
Thank Heavens, I was contacted by Meg shortly thereafter and was directed to SarcInfo, the then MP website. That saved me from a lifetime of prednisone and steady decline with no hope. The MP was truly my silver lining in a very dark cloud in my life. I feel confident that, eventually, I will be a spleenless, but not spineless, sarc - free, healthy person again - no thanks to the renowned Clevleland Clinic.
Last edited on Wed Jul 30th, 2008 20:08 by Kas
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Kacey
Member in Phase 3
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Posted: Wed Jul 30th, 2008 20:39 |
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I have a question for anyone.
Has anyone had not being able to sweat as one of their symptoms. And if so, was there any problem when going on MP. My son is wanting to start, and one of his symptoms is that when he gets hot he cannot sweat and instead breaks out with rash (stinging and itchy) all over his body. It stays until he cools himself. He has to be really careful not to overheat. Drs are not doing anything, so he wants to go on MP. (He also has Th1 symptoms) We are a bit worried as I had sweats and chills when I started. Since he can't sweat we are worried how this will affect him. This inability to sweat has slowly crept up on him, he has not always been like this. Someone told me that it could be caused by bacteria clogged sweat glands. Has anyone heard of anything like this before?
Kacey
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Lyme Meniere's D12553 D2529 Ph1Feb08 Ph2Apr08 ibuprofen NoIRs housebound in low lux home D2517Apr08
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 1747 |
| Status: |
Offline
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Posted: Thu Jul 31st, 2008 01:58 |
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Kacey,
I have never been able to perspire most of my adult life. My body temp would increase (been as high as 104 without illness) and my face would turn bright red until I got cooled down.
I tried running some years back while in the summer months and my body temp would increase so much along with symptoms of nausea I had to get into a tub of cold water to lower my body temp or get to an ER. I always labeled myself as having "heat exhaustion" and avoided the sun and "hot places"... little did I know it was part of my Th1 inflammatory disease. Several others in my family have the same "condition/symptom".
After 2yrs on the MP I actually break out into a sweat with real perspiration and I even wear deodorant occasionally....never did before
Best, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Dody
Member in Phase 2
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Posted: Thu Jul 31st, 2008 02:47 |
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MAJFSLAS,
Now that you mention it, yes, I have been bothered by recent increase in redness and discomfort under my bra--and just on one side, go figure. I think my skin has gotten thinner, and this is probably IP. That's reassuring because if IP, this too will (probably) pass.
All best, Dody
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Lyme arrhythmia Lithium Valium Tylenol Mucinex NoIRs low lux home lite exp r/t to work cover up outside Mod Ph2Jul07 Ph2Apr08 D25Feb08
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Bobbie
Member in Phase 2
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Posted: Sun Aug 3rd, 2008 22:24 |
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Hi everyone!
With all of the talk about losing weight, I have to ask this question. . . Has anyone gained weight in Phase 1? I gained about 10 pounds within a couple weeks of Phase 1 and so far it has not or will not come off. I have been in Phase 2 a couple months now. I am sticking to the low carb diet, but it doesn't seem to matter. I was about 10 pounds overweight when I started the protocol--now about 20 pounds.
I became very bloated the entire Phase 1 and still in Phase 2 so I'm thinking it may just be fat bugs in my digestive system, and I have 10 pounds of bloat and cellular debris to still get rid of. I am encouraged to hear that many people lose weight eventually.
Bobbie
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CFS IBS atrial fib 125D94 25D60 Ph1Feb08 no meds NoIRs cover up work at home low lux cut food 25D39(Feb08)Ph2May08 25D21.1(June08)
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