since i went to denver to national jewish last thanksgiving, and they found sarc in my heart along with lungs, liver and neuro, i've been going to ucla to see dr. lynch who has done thousands of sarc patients, but i'm a bit different. been on several txs ending with cytoxin 100mg a day and up to 150mg a day then back down to 100 last month. i had a echo of my heart this week and showed two valves are leaking that weren't there six months ago. i have had some shortness of breath, chest pain and blood pressure drops the past two months and this explains it. there is no tx or valve replacement, seeing how the sarc will just take over the heart again and damage it besides the infections with open heart are severe especialy on txwith cytoxin. my point with this doc was to tx agressively so my heart would not advance, never mind my walking problems, neuro and breathing. but now its too late to try and prevent more damage to the heart. i see ucla monday and i'm irate, but what can i do now. one valve is a 1+ and the other is 2-3+ the highest is 4 so one valve is almost totally useless which means my heart will cease to function and i,...........well will be in a different place. i've been in medical until i got sick for 17 yrs and sometimes the more you know the worse it might be, you know the progress and the outcomes.
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sarc has advanced in my heart
- By ostrichlegs1
- Posted October 24, 2009 at 12:01 pm · 6 replies
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- By SarcoidPrincess
- Posted October 24, 2009 at 3:17 pm
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I'm so sorry. I don't know what to say except I'm glad your going back to where you feel more comfortable and confident.
I was just recently officially diagnosed with cardiac sarc but new it for a while. I have Tons and tons of PVC's and lower blood pressure. Was taken to the ER via ambulance this week and now they tell me I have a little bit of fluid around my heart. That wasn't there before! I have the pain but not as bad as that one day. But I know pain is probably not a good sign. I pop some tylenol and keep going. I see my cardiologist on Wednesday.
I'll pray for you. I can't imagine the disappointment, the fear the questions you have and like you said the more you know the worse it is. Its my curse. I'm not in the medical field but as soon as I find out something I have to start researching. I feel more comfortable knowing than not if that makes sense.
God bless:)
- By rascalsmom
- Posted October 24, 2009 at 3:52 pm
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My thoughts - get a second opinion from someone else, not someone recommended by the person you are currently seeing. Docs are only human, but it may be that someone else will have a totally different perspective and be able to do something for you. I am really sorry that you are dealing with this and I hope someone else can offer you another option. Rascalsmom
- By JRLITTLET
- Posted October 24, 2009 at 10:40 pm
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I'm sorry to here that. I to have went to National Jewish and seen a specialist and was advised that I had fluid in my left lung. He wanted to give me a biopsy on my lungs, but I won't let them. i'm not sure anymore if I can trust any of these doctors, so i just ssaid I will not take anything else but Reishi and see how that goes, so far so good no flair up? Have anybody else taken Reishi? if so did it work for you?
- By ozealan
- Posted October 26, 2009 at 10:37 am
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If you are talking about Red Reishi a few people have tried it without success and have documented their trial. That doesn't mean it won't work for you, but if you would also like to journal your usage, as the others have done, you may be using it in higher or lower concentrations for example, well it will hopefully give you benefit. To find other sarkies opinions and efforts, just go to the little box in the top right corner, type in red reishi and click on "find it".
Wishing you well
Alan
- By shadowtoonces
- Posted October 26, 2009 at 10:39 pm
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My prayers go out to you..it is so heart shattered when we find out this stuff spreads..take care!
- By allezua
- Posted November 1, 2009 at 12:49 pm
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I started Reishi a week ago, I know that there are many places to purchase it from, I ended up buying from a chinese store it was $20 for 60 pills. I am taking 2 300 mg capsules 3 times a day.
When should I expect to see any changes if at all? Am I taking enough? I also bought the tea, but have not started that yet.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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