Blipette, Carol isn't in the medical field, but should have a p.HD by now in liver disease, pharmacology, and all things related. She has lived it with her partner, Mike. She's very intelligent and someone had to be the sane one as he was in la-la land from HE before transplant.
I was a medical transcript
ionist for 15 yrs., prior to being granted SS Disability in '05. No doubt that knowing the terminology and how to research has been a big plus in my personal journey. Of course, the medical field--drugs, protocols, treatment, etc., are changing daily, so I have to look things up myself, but I've also learned a huge amount about
liver disease from the people here sharing their experiences...the ones who went before me with hep C, HCC, transplant, etc. If you research on the Internet, though, you need to be sure to go to reputable sites with solid information. I consider this one of the very best. You can also find information at the American Liver Foundation, the National Institutes of Health, the CDC, etc.
I can tell you now that hepatologists do not look kindly on OTC meds or herbal remedies. Early on, I had asked my hep doc about
taking milk thistle. She said it probably wouldn't hurt me, but wouldn't help, either. So basically, money down the drain. Especially when one is in the diagnostic phase of a new symptom, etc., they want to be able to eliminate any possible OTC substance (and they are unregulated) to make sure it's not causing the problem. Just yesterday, I was told to eliminate aspirin...after first being told to take it because of high platelet counts. That problem is resolved, so no more ASA is needed.
I had a friend some years back who took L Tryptophan (OTC) for sleep. He lost all motor function, was falling into glass tables, got a pistol and threatened to kill himself, which bought him a bed in the psych unit of a local hospital for a week or so. The docs just couldn't figure it out. Finally, after a muscle biopsy, they found that what he took was from a contaminated batch of the supplement manufactured by Showa Denka in Japan. Some died from it. He came back from the brink, but was never able to work again (he was in his 50s and a journeyman electrician) and his intellect was never the same. He won a 6-figure lawsuit. But that doesn't really make up for what was lost. If you're worried about
intellectual function, think about
that. Just telling this story gives me chills.
Do not lose faith. There is the hep C "fog", HE, and other symptoms associated with liver disease, but they can be treated.
Should you be evaluated for transplant, they will require that you cease taking anything not approved by them. Don't lose faith in the medical community. But do make sure you are being seen at the best possible transplant/liver disease facility available to you. If anything, I find that they have become too specialized. PCPs know next to nothing about
liver disease, GI docs aren't much better. So you want a specialist, a hepatologist.
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Post Edited (hep93) : 5/9/2012 3:50:04 AM (GMT-6)