Amen, brother.....I don't think it's the meds though. Allow me to share with you a post from my blog at another site:
I went to my latest appointment with my new Specialist today. Seems the more I go, the more I learn. As stated in a previous entry titled "My Latest health Prob" I spoke of the battery of tests I had to undergo. One of those tests, revealed C-Difficile & Wasting Syndrome (again). Today I found out the CAT scan revealed something on my Liver, the specialist said today that could be just a Hemagiogram (sp*) (a small cluster of bloodvessels), She then went on to say, it may very well be a cyst, of which she didn't think it would be malignent, but ordered an MRI for Monday.& and an Xray of my left Hip
She then spoke of getting all my records from the start of this, and after looking them over, she had seen where a past genotype revealed I was resistant to the regimen I was on, and was never changed off of. My previous specialist, now retired, had kept me on that regimen because of other resistance issues, allergic reactions, etc when I was first discovered to be positive, this at least held a low baseline, which was better than none at all. I don't have alot of options. His replacement was some newly graduated young guy, who added isentress, that indeed cleared up 3+ yrs of chronic diarhea, it put me back at undetectable again. but that is all he did, he still didn't change my regimen. So basically I was on a monotherapy.
So this new Specialist I found, explained to me that being resistant to everything but the isentress, will only cause me to become resistant to the isentress also. However, with a Viral Load of under 50 copies, they cant do a genotype. So.....She has ordered me to stop all my meds, so I can get my Viral load to rise to be able to genotype and get a good regimon that includes isentress before it mutates more and I end up with no options at all.
This will be the first I have not taken those damn meds that helped save my life, since I was discovered back in Feb of 2005, when it put in a 3 month coma. I am really not sure what to think, on one hand, yeah I like the idea of not having to swallow those meds, but on the other....I know where I will end up without them. What I don't know is how fast I will go back to where I started. She said I may be off them for 4-6 weeks.
So much of next Monday will be spent in the hospital getting MRI's, Xrays and a genotype. I have a lot of Faith in my Doctor, in God, in God guiding my Doctor, and even in myself. So while many on meds ride the pink cloud of feeling healthy, know that there are many like me, who aren't as lucky to have that luxury, and if we did....I myself, wouldn't take it for granted.
All of this has put us in a scramble to get everything moved into the new house just in case I go downhill quickly. Normally I would have taken my nightly handful of pills, but tonight is a first for myself, and my family.
Not many of the meds work for me, I do have neurological & brain damage from my state of AIDS progression. It fills my days with challenges..some I win, many I dont. Taking me out into the public is like logging me onto the internet...it's a dice roll, on how I may react to the stimuli. Doctor's dont hold the answer's, neither do the "wonder drugs" they gouge us for. I go downhill anywhere close to where I was last time, my video camera is coming on, and people will see the truth about this disease. People like Charles,myself and many others dont have a choice but to be a guinea pig
Great post Charles, thanks for sharing this with me..
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