POZ Community Forums
Main Forums => Living With HIV => Topic started by: Moffie65 on May 31, 2006, 06:43:28 pm
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So, what a month May was.
First off, my struggle with my viral load still goes on. In the last five weeks, my vl tripled, and ended up at 3000. That in itself is not a terribly shocking number, however if left alone, it would then be 10000, and then 30000, until it would soon be totally out of control. My CD4s are healthy at a 500 level, but my percentages are paltry at 12%.
In a very long discussion with my MD, he shared with me that he would love to get a genotype test done, but that would require waiting until my vl had risen well above 5000 to get a reading, and then it wouldn’t necessarily be accurate until above 10,000. He is pretty worried about waiting for that to happen, as then the mutation might be very hard to control. He is very good at this work and is suspicious that my virus had mutated to some type that is only treatable with AZT. He is placing me on Trizivir, a combination of Abacavir, Lamivudine, and AZT. I told him about my allergy to AZT, so he is going to watch very carefully to see if I can handle the switch. For those of you not familiar with my case, I have gone through most of all the medications at this point, and there are few that will be efficacious for me to take, however, he is hopeful that with the new combos, I might be able to fight off one more viral mutation and keep me here for a while longer. We will see………….
Some of you might remember that I started DHEA in February, and my energy level has leveled off and I am now capable of working for more than two or three days at a time without a two day break. This of course, is wonderful news for someone with two whole pages of a “To Do List”. I finished the drip system in the back yard, a goal of three years. I washed, detailed, waxed, and did oil service on my car and my sweetie’s car. The yard tractor is fixed, and is only awaiting a new battery to start moving dirt once again. The screen door is fixed, and loads of little things have been accomplished that have been on the list waaaaaaaaaaaaaaaaaaay too long. In the continuing struggle to keep the Javalena (wild pigs) from destroying the back yard; we are concentrating on getting some of the grading work done in the back part of the property, then we are going to be erecting a chain link fence down into the canyon, to keep them off the embankment that will surely wash away with the summer rains. (we have a 100 foot deep canyon running through our 1.25 acres here) Then we have to remove the watering trough that was installed into the ground by the last owner, and make a new fish pond and fire pit. Then, of course, there is the fence in the front yard that has to be installed and then the cement work on the sidewalks, and then we will be finished with the outside. We do ALL of our own work, so these things take time when you are dealing with HIV and aging at the same time. I am grateful for the change in my energy level, but I must caution the readers that they must remember that I am not a young person anymore, and at 59, adding a natural steroid that the body has stopped producing is not a bad idea. After all, the women do it all the time.
I had the privilege to speak to a group that meets once every two weeks, to fill their medication trays, have lunch and listen to special speakers. This group hit me like a ton of bricks. Most of them were close to half my age, but most of them looked older than me. I have to tell all of you that if heavy recreational drugs are a part of your life, there is little hope that you will survive a long time with HIV in your body. It was just like the old days of HIV, with the conversation during the break, centering on those of the group that have died since the last meeting. I implore you to get into therapy and get the drug elephant off your back if you want to stick around for any length of time with HIV in your body. As I first said, this group has haunted me for two weeks, and the memory of their faces is etched on my brain forever. I pray for them whenever I remember.
Two weeks ago, there was a trip to Phoenix to attend the ADAP Formulary Committee meeting, and we added several more drugs to the formulary, and now it is one of the most comprehensive in the country.
As you can well see, I have not been that active here on the forums, but I have been checking in every day to try to keep up with the goings on.
I am just very tired, and this fight to keep the bug at bay has gone on for several months now, but it seems that it has successfully mutated and is now on the run to dominate this tired body once again. I can tell you that I am not terribly thrilled about this latest development, but I do know for a fact that there are people right here who understand and are going through the same thing.
I look forward to this new board, as it is going to be fun to use and fun to exchange news and pictures with. To start off that theme, and celebrate this new event in our communication, I attach for your pleasure a photo that was taken just last week, in my yard. The flower is from a Magenta Desert Willow tree, and they are stunning, and this particular strain is quite rare and unusual. Most of the Desert Willows are different intensities of Pink.
Thanks for reading.
[attachment deleted by admin]
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Tim, will be praying that you can tolerate the medicine switch and everything will work out.
Rod
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Hey Buddy thanks for the update. I have been concerned about you. I pray the switch goes well for you with the meds. My honey is seeing the Ryan White folks next week and I suspect he will begin a new chapter in this thing. As always I will keep you informed. Lookinf forward to getting together sometime. Thanks for being one of our life coaches.
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Hello Tim,
Good to hear from you. I am sending plenty of wonderful thoughts your way.
Hopefully the Trizivir will begin to knock things down, and it's good that you will be closely monitored due to the AZT. I was only on Trizivir for a month. It sounds as though you both have been keeping yourselves pretty busy. You know, I always feel that keeping busy is a good thing !! I have always been amazed, at all that you can accomplish.
Tim, keep us updated please, as to how you are doing.
The Best-----Ray
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moff, its another new adventure. thats the way i view all my new drug regimens. I go friday to find out what they have in store for me. i will be in a trial for 114 and they talked about adding azt, which I havent done since mid 90s and do show some resistance to,but less than everything else,I guess.
by the way,you dont wanna be in any boat with me, because I get sea sick.
Lets hope you have no sides and everything works out.
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You Sir are an inspiration...I guess I will quit bitchin' when I load the dishwasher.
The best of luck to you...you are in my thoughts.
Peace,
Hal
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Hopefully you'll be able to tolerate the new meds and that you will do well on them.
Wishing you well,
Phil
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I love you Tim!!!
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Hi Moffie
It seems the trends in your lab results are pretty clear. The regimen you were on is clearly no longer able to achieve optimal viral control.
By changing to Trizivir you and your doctor have opted to place you in what I call a "holding pattern". Science has shown that the more mutations the virus has the less able it is to replicate. By using Trizivir the strategy is to bring out at many mutations as possible. The advantage to this strategy is you can hold off on using options that you still have available to you and wait for additional drugs that are coming. (Though your mention of being allergic to AZT would be a big concern if it were my decision to make) It's a perfectly reasonable and logical approach. But it does not mean you are facing a future of certain failure. In fact it means you are preserving options and optimizing possibilities.
I am somewhat concerned by your decision to not get a resistance test now. A VL of 3000 can/will/should produce reasonably solid evidence as to what mutations you are currently dealing with.
I am also concerned that your doctor is putting you on a new regimen before doing a resistance test. If I understand the science correctly, NOW would be the time to do a test, not after your regimen change. And I certainly would not settle for a geno type test. I would insist on a pheno-sense test to provide the most comprehensive data.
At the very least, right now you do have treatment options. But you wouldn't want to use those options without having as much information as possible. For instance you might be able to use a dual PI/Fuzeon regimen (unless you have chosen not to). Or you could consider some of the possibilities that Tim Horn mentioned to you a couple of months ago.
Whether you opt for the "holding pattern" or opt for using currently available choices, it will be what is right for you.
RAB
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Dear Tim,
I was in the Medical Marijuana Clinic in Guerneville last week, posting a flyer for the RWCA reauthorization. There was a sign on the wall which read,
"They say that right before we die, our whole lives pass before our eyes...
Make it worth Watching."
I will be carrying this message in my own mind for a long time. I can see myself doing a black mink ad and being a legend in my own mind. Have the best day
Michael
www.Commission-on-AIDS.org (http://www.Commission-on-AIDS.org)
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Thank you all so very much for giving a damn. I sometimes find myself getting weak and just throwing in the towel with this HIV mess, but when I come here, you guys always pull me out of it for a time.
I know that my virus is getting the best of me, and yes Rocky, you have it right. My vl has been one of the most difficult things to master, and my MD definately explained what you said. He also said that we might get a reading at 3000, but most times isn't as accurate as it should be for making treatment decisions. He is simply going on a hunch, and has given me a once a day dosing to see if the Trizivir will rake me over the coals, or be effective. Thanks for pointing these things out, and yes I did know most of it, but I am still having some trepidation and hoping for the best in this wonderous puzzle we call HIV.
In Love and Thanks.
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Tim,
I'm sending the most wonderful virtual hug to you even as I type.
There, did you feel that? :D
Take care,
John
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Timmy honey,
I know you are sensitive to AZT, but perhaps this many years later the smaller incorporated dosage within the Trizivir will be less harmful. I've been on Trizivir, and Viramune successfully for about five years now, with very little bad side effects.
My main gripe has been, and still is, the abdominal, and bust weight gain. You know what to look for, so go with caution.
I think Rocky made an excellent point, but it is after all, ultimately your choice.
Love you babe, can't wait to wrap my arms around you in a couple of months.
Be well my sweet. :-*
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Thank you all so much for your support this week.
Yes Lisa, I understand about the reduced toxicity/dosage and we are hoping that this will make a difference.
As of this morning, I am out of my Kaletra, not because of my laziness, nor of my lack of caring; but due to a glitch in the VA "PERSONALIZED" pharmacy website. I ordered my meds about three weeks ago, but the order didn't go through for Kaletra, so I have none. Nice isn't it?
You see, for me this is all so demeaning and annoying. You work your ass off to be adherent, keep your meds up and not run out, but then some Geek in Kansas fucks up the software, and then you are ROYALLY SCREWED. Today I will be dealing with this oversight, and give it over to someone else to deal with. Add to that, the Trizivir is not here after a whole week, and the delivery time of mail between here and Tucson is one day, if they take their time. BLEAHHHHHHHHHHHHHHHHHHHHHHHH
I am just up to here with BULLSHIT!!!!!!!!!!!!!!!!!
In Love, (and a vacuum of emotions)
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Hi Tim, reading your initial post to this thread was giving me wings. All that you are going through and catching up with that work load is just amazing and also enouraging!.
Im sorry to read about your Kaletra delay, that is truly annoying, how can they do that?. These are not just any other meds. I hope you will have that sorted out pretty soon. Recieving your meds on time 'should' be the last of your concerns at the moment. I hope that your new combo will work well for you and keep up your activities at the same pace,
Good luck and take care,
mark
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I hope the dust settles for you Tim, they say good things come to those that wait...well you deserve to be #1 on that list.