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hamilton
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Reged: 06/21/11
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Initial appointments - what is a typical timeline?
#256275 - 06/21/11 11:08 PM
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Hello all.
I was just diagnosed last month. After the first few rocky days, I am learning to cope better and better. I am currently living in Minnesota and the resources and non-profit organizations available here are very impressive thus far.
What worries me the most are the upcoming doctor visits. I foresee a lot of red tape, bureaucracy, run arounds, etc.
As a general question to all, what is the typical protocol /timeline for the first few appointments? My CD4 is 306, which terrified me, and I would like to be on medication as soon as possible. How long does it take to be put on meds? I assume the doctors want to have a lot of observations, find a stabilized CD4 count, etc...
Any advice on cutting through the b.s. and maximizing my appointments to their full potential? I have read some articles on here and they seem pretty vague or too common sense to mention.
I try to ask people around me and they tell me that it is different for everyone, but then don't go any further. I understand my experience might be different, but I would like to hear those different experiences in detail so I can prepare for my own. Thanks for your help.
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Alex1971
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Reged: 06/22/11
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Hello there:
Don't be afraid, you will be ok. When i first was diagnosed, my CD4 count was high enough that I didn't need meds. I went to the specialist, he asked a few questions and explained a few things, and all that made me feel a lot better. It took like 3 years for me to be put on meds. When my CD4s went below 300, i started on ATRIPLA, 1 pill a day and it has been great. No side effects and my CD4s are now between 750 and 820 so all is well. I am a physician and I know how you feel. You need to be hopeful and live as if you didnt have it, but always being aware that you do and just take good care of your self.
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DAH13
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Reged: 06/03/11
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As to what was usual I have no idea. I am paart of an HMO so when county health gave me a positive result I had to schedule a visit with a primary dr. to get a referral to an infectious diseases dr. This all took time and I was very anxious as my count was 100 and my viral count over 190,000. Once I got into the Dr. he was very informative and helprul. We discussed what regimin to put me on, the plusses and minuses of each. He reassured me that with the meds I would be fine, not cured but i would die of a heart attack, stroke, so\mething besides AIDES. Once he ggave me the perscriptions it took 3 days for the pharmancy to get thime in, but now I am on them. Hope my experience helps. By the way the meds I am taking has a plan that the manufacturer pays for my co pay up to a certain amount. Sure was helpful when cam time to pay.
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Mp11
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Reged: 06/28/11
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Posts: 1
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Loc: Minnesota
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Hamilton-
I'm in Minnesota and on a silmilar path as you. I just was diagnosed a few weeks ago through a regular blood test just after Memorial Day. I have good insurance (HMO), so was able to self refer to an infectious disease doc and that took about a week to get in. He did a confirmation test and a whole slew of labs and I found my CD4 was 357 and a low viral load. We scheduled a second visit for two weeks later which I just had. So far, the doc has been great and spent almost an hour each visit going through the initial stuff and then on the second visit reviewing the labs, what they mean, my questions, and where we go from here.
I'm not sure of your insurance/coverage situation, but my doc was really happy with my initial numbers and we are waiting for the next set of labs to decide what to do, but we both agree that I'll probably start atripla shortly after that depending on what we find. He is expecting the numbers to be better, but that meds will probably bring me undetectable within a short timeframe, so that's the path I'm intending to follow at this point. He told me that when to start is up to me and it won't make much difference if I start now or in a few months once we monitor more.
I'm taking a trip, so am waiting until I return for the next labs. The doc made a good point that I should go have fun and know I'm healthy - he didn't want me to do the labs first in case there is a small drop and I would end up obsessing until I get back. I'll do the labs, schedule the third visit, and decide about meds. After that, a few sets of labs to monitor the meds and then get into a routine of every 3-6 months.
I'm finding that I can probably get an appointment a week or two out. I did a lot of reading - both Internet sites, forums like this, and a couple books written for people newly diagnosed. Those all helped a ton in knowing what to expect and helped me prepare for the visits and know what to ask.
If you want to chat or know more, let me know. Hope you are doing well and this helps.
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I know I live a world away, but it was about 6 weeks from my diagnosis to beginning meds. I popped positive on the 21st of January, got my CD4 and VL count the following week. I got my genotyping and sensitivity testing back the week after that, and then ordered the Atripla meds - they took 2 weeks to come in initially because I am the first one of my doc's patients on this specific cocktail.
Three weeks ago, my girlfriend popped positive and she was on the meds the following week because my doc was well set up from my case, and her CD4's were so low.
I think things are quick here because we go through the Red Cross mostly and there is minimal red tape. That, and we are paying everything out of pocket because it is pretty cheap here in Thailand.
I think you will feel better being on the meds, after the initial few days of getting used to them. My symptoms went away and I got my energy back and am doing well. The same appears to be the case for my girlfriend.
Good luck and let us know how it goes!
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