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30678 tn?1217992847

Ammonia levels who do I believe?

Hi, everyone, a quick history, I'm 1a and did 48wks of Peg/Riba in 2004-05 cleared at 12wks and end of tx but relapsed at 6mo pcr, Doc suggested I clear the meds, then start a 72wk tx, did the whole battery of tests before starting again bx shows stage 3, but where the problem comes in is my ammonia level is 620,(0-40 is the norm ) at which Doc says I should be dead or in a coma, not joking around in his office. He had the test done in 3 different labs, cause he said the tests must be wrong, put me on Lactelose (yuck) and even with 3xday 40ml my levels still 375-450, finally put me on 1/2 dose Peg/Riba for a week to see if it would throw me into a coma, didn't and just finished my 8th week full dose pcr at week 4 showed drop from 4mil700thou to 56thou going for 8 wk pcr tommorow, My Hep Doc says ammonia level tests are unreliable so quit getting them (but wouldn't take me off lactelose) all my other bloodwork is fine. All my gastro and Hep Doc tells me is my case is unusual, anyone else have this, or know if I should worry that I'm not getting the whole story?
14 Responses
Avatar universal
Make sure the insurance company will PAY for the 72 weeks.....as you know mine is denying even though I'm already IN IT.

I don't know anything about ammonia levels I'm sorry. I just wanted to make sure you had everything ironed out before you start.
30678 tn?1217992847
I had written in about my problem with Blue Cross before I started and was told back if the Doc writes the script they have to fill it, or basically ignored. So I appreciate you for saying it, but I got it through the drug Co before starting and told Blue Cross to.....well this is a family forum lol.
Avatar universal
I don't get quite what you mean...'splain!

Avatar universal
You mean the drug co approved all of your meds in advance as in Committment to Care?

I'm working on that now but STILL gonna try and make a fight with those....................insurance................'rds!

I have huge hate for them!  ;)
30678 tn?1217992847
Back before I started tx I was told by Blue Cross that 72wk tx was experimental, and wouldn't pay unless I went the consesus interferon route, and there was a thread talking about insurance and I wrote what I had to do. The response was that if the Doc writes it the insurance has to pay, didn't want to argue (there was a lot of drama going on in the forum at that time) So I just let it go. It was a couple months before you had your problem with them.
30678 tn?1217992847
We crossed each other, I'm on Pegasys and I called the Co, Roche and they faxed me an application, I faxed them my script and letter of refusal from insurance Co and was approved in 3 days and they send my meds free, a months worth at a time overnight mail in cold pac, didn't go through any program except the Co. itself.
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