Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (...
|
Lei Gong Teng / triptolide
|
Watch this |
| View More Posts Ignore |
Hi,
I'm new to this group and was wondering if anyone has heard of or tried this Chinese herb that is being tested as a possible help for PKD. I looked on the boards here but didn't find a reference to it -- if it's already being discussed I apologize. It's available online but it can be extremely toxic if not prepared the correct way or if it's misused. I emailed the Yale researcher who was looking into the herb and he cautioned me that it was nowhere near human clinical trials at this point. I'm getting so desperate I'm willing to try about anything. Does anyone know of a major medical center that has an alternative or integrative medical program? Posted on 05/06/08, 04:05 pm |
| 3 Replies | Add Your Reply |
| View More Posts Ignore |
Hi gudrun70.
I know how scary it is to have this disease. It's been in my family for generations. Please be so careful with using herbs and honestly, I have no clue about this herb but the idea of taking a toxic herb when you have a kidney disease doesn't sound like a good idea to me! Have you been in the PKD foundation website and look in the clinical trials section. There is a new drug being tested called Tolvaptan. See if they are conducting trials near you. It's too far a drive for me to be in the trial but I am hoping this drug is going to be the miracle treatment that they think it maybe. Take care, Andrea 
|
|
|
|
||
| View More Posts Ignore |
Hi Andrea,
Thanks so much for your input! Yesterday I called to get the application for the Tolvaptan study. (Too bad my new nephrologist didn't know about it awhile ago.) I don't know if I'll be eligible or not... Thanks again!
|
|
|
|
||
| View More Posts Ignore |
I agreed with AndreaG. Years ago thinking taking herbs, that I would benefit from it instead of medications. Yike bad move on my part. End up in hospital cuz even though I was taking correct amount; it was just too toxic for my kidneys. I can't even take vitamins either. Wish I could go for trial for Tolvaptan but since I am disable I have no way of getting there to get treated. UGH.
|
|
|
|
||
Does anyone have any ideas on supplements? I'm taking Vitamin B, CoQ Enzyme 10, and Omega Fish Oil. I saw three …
My aortic root has enlarged from 3.8 cm to 4.1 cm in 6 months. has anyone heard of this associated with PKD?
Does anyone read the News & Info? It states that PKDers have cells with deformed cilia. It also says one symptom …
