POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: pos2007 on January 21, 2009, 11:38:13 am
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I would like to find out how you address falling CD4 levels. I achieved an undetectable viral load after taking Atripla for 7 months and my CD4 went from 150 up to 350, but now has dropped every month till now it is just over 150. My Dr. is not too concerned, says it happens, but now I am having memory problems, weakness, sinus infections, etc, like I had before I was diagnosed. How can I get my immunity back up? I Have been pos. for around 15 years but didn't find out till 2007. Also How do you get a primary care Physician to take an HIV medicaid recipient? No-one here wants to do that. All I have is my HIV Dr. mostly every 3 months. I can't afford to move to the big city. I live in an unfinished house that was started before I got sick and haven't been well enough to complete it and now can't afford now to finish it since my insurance refuses to pay any bills because they claim "pre-existing condition" even though they never tested my blood or had any exclusions on my policy when it was purchased. I had no health issues at that time.
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First, your doctor is correct. As long as your VL is being suppressed that's the goal, and over time your cd4 should slowly rebound. Some people experience more of a rebound than others, and the pace varies wildly. There's basically no magic thing to do to change that fact. Keep in mind that you began treatment at a low cd4 so that's a contributing factor -- you allowed your immune system to get rather damaged so repairing it will take longer. I began with similar numbers, but after about 5 years I was stable at around 400 cd4's, then they rose even more in the following years.
Second, I could be wrong but it sounds like what your insurance company is doing is illegal. Technically yes, you infection pre-dates your insurance but it was not diagnosed yet so I don't think they can technically make such a claim. Was there a gap in overall insurance coverage before you went on this particular policy? At any rate, I'd advise contacting an insurance advisor at an AIDS service organization -- I see from a previous post that you live in S.E. Missouri, so even though you live in a rural area I would assume that St. Louis is a doable drive to at least meet with someone about this issue. I would definitely get a 2nd opinion on this issue, and often ASO's have some sort of pro bono legal connections that can help you deal with the insurance company if it comes down to some legal issue, etc.
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Thanks for the reply. My wife is very concerned, especially since I have provided her care for 2 years, that I have resumed a decline CD4 wise and physically wise after making the dramatic rebound. We didn't expect my Tcells to start dropping 30 pts per month.
As to an advisor, forget that down here. When I asked for assistance I was handed the phone book to look for myself. We did travel to St. Louis to meet with social workers several times , but they would only talk to us on a limited basis because they are in a different district than we are with different programs and rules and they are not suppossed to be talking to people outside their district. They have been shocked that our social workers don't take care of these matters for us. They tell us that in their area, the social worker takes care of all these problems for the client because their job is to reduce the stress on the client as much as possible. I take my files of paperwork up their with me , but like I said, KC and St. Louis fall under different guidelines and programs and they are not suppossed to talk to us. Should I Expect my numbers to start going back up eventually? after going Up to 350 before starting going back down for the last few months, do they finally bottom out some where and start back up again?
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Actually I should have asked you if your doctor had placed you back on something like Bactrim as a PCP pneumonia prophylaxis since your cd4's went below 200 again. That's the biggest concern of having a count like that, but rather easy to address.
As far as you question about what to expect with cd4 trend lines, like I said there aren't any guarantees, but I'd expect that yes, over time they will start going up slowly though assuredly it will have periodic dips. More important is your cd4% number and its trend line -- do you know what your last several numbers for that are? The % number is a more stable predictor of immune function, whereas the cd4 number can fluctuate +/-100 quite easily.
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No Bactrim or Dapsone. Allergic to both. I quit the Atovoquone around 10 months ago when I got close to 200 when I was on my way up to 350 because it was costing us $2700.00 per month for that medicine for both my wife and me ( total). Now that we have finally hit the financial bottom of the barrel, maybe medicaid will pay for it , but the Dr. has not mentioned putting me back on it again. The meds are a battle every month. Medicaid does not want to pay because I have insurance. The insurance won't pay claiming preexisting condition, so it takes about 3-4 days of phone calls every month to get my meds. and some of them neither will pay for because there are cheap over the counter meds on the market ( even though they don't work for me ) and I my Dr. prescribes prescription meds instead. I just try to stay at home away from people and I am just too tired to get out and do much anyway right now. Sucks , because when my numbers were going up, I was finally starting to feel like doing some of the things I had neglected here at home from not feeling well and trying to get a few things done.
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If by trend line you means which way the CD4 numbers are going, once reaching 350, next test was 285, then 260, then 220, then 154
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If by trend line you means which way the CD4 numbers are going, once reaching 350, next test was 285, then 260, then 220, then 154
I want the % number -- if you don't understand the difference between the absolute CD4 number and the CD4% number please read here:
http://www.aidsmeds.com/articles/TCellTest_4727.shtml
Additionally, if your doctor is not discussing this number (the % one) with you when he goes over your lab works during appointments I'd advise asking him why he isn't doing that.
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Pos2007, I don't know that you can do much for your CD4 count besides maintaining meds adherence and healthy habits; by that I mean good diet and nutrition, good sleep habits, regular exercise, and no excessive drug and alcohol use.
You may also have some as-yet undiagnosed infection that is causing a problem.
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Don't drink, Never took drugs, Never missed a dose of my meds. Thanks for the link on the %. I was going to ask about that tonight. Fed the vampires today and i asked the Apria Nurse practitioner about the percent deal. She said " it was in normal perameters" whatever that is but I would have to refer any more questions to the Dr. who wouldn't be able to see me today because they were "over booked" as usual.
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I just joined tonight and read your threads. I am also from semo, started at 180 , on atripla, went up to 350 and am dropping too. down to 206 now. I think I saw 3 different people from Semo on this website so far, so aids must be more widespread than people think down here. You are the second person I've found HIV pos in Semo that's history is almost a parallel to mine. I had a favorite t shirt, even though I don't remember what was on it any more but the frog and bird deal, I had that picture taped up inside the cabinet door on my desk for years. And yes, I don't think something is right with healthcare in SEMo. My wife got Hiv from a blood transfusion and went through a lot of Drs. with no Hiv tests too. I was diagnosed after her. Your wife will get better. She's not 100%, but I don't have to care for her now. No-one except the doctors in St. Louis thought she would live. Atripla also makes me drunk sometimes. I got my Report Monday from the ID clinic and although my tcells are at 206 now, she said the percents are good , which meant, she said the lower falling tcells really don't mean anything. I looked at the link on percents since I am new to this too ( this is my 12th month on Atripla) and can't say I understand it, but it says in several places that percents are more accurate. I do have to say I am much tireder since my numbers dropped. I don't use drugs, Or drink. it was suggested to eat healthy & get plenty of rest. I just wish I could get the rest. I get about 6 hours with Ambien. I wonder if there is a correlation between symptoms, strain of Hiv and the drug. I was getting forgetful, then started getting better, but now and get like I am dislexic since my numbers are dropping. I have to dial a phone number 3 times 2 get it right. :-\
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Hey Poz2007,
Sometimes, people maintain low CD4 numbers for a while before they build back up. Sometimes, it is caused by some underlying condition, other times, there is no reason.
I know there must be an AIDS Service Organization near you. If you click on POZ at the top of the screen, it will take you to the POZ Magazine site. There, you will find a box with something like "How to find services," or some such.
If you click on that, you will come to a screen that will help find an ASO near you buy typing in your zip code. I was going to do it but there are a bunch of zip codes for Kansas City!
Anyway, that may help you find services you need. An ASO would be able to help you navigate the red tape and get some help.
Hang in there.
HUGS,
Mark
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It may help. if possible, to switch to a PI based combo, or even Isentress (perhaps via a compassionate access programme this one0 as these tend to produce a better immunological response, perhaps +50 CD4s. Some kind of PCP prevention meds is important, even a non-standard one. Hope this helps - matt
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Interesting you suggest typing in the zipcode for support in our area , Or maybe someone else suggested it to, I can't remember, but I did that last night. I typed in 63801, then the next biggest city in the area Poplar Bluff, then 63701 which is the biggest town 30,000 I think, in our area where all the quacks are ( sorry but they are really lacking in their medical care plus demand payment up front) and I got a zero for the number of hits. I have a gay aquaintance that had a partner that died and I asked him some months ago about support groups and he told me about some on line ones in California that were the only thing he ever found. There are none here. I don't think he ever heard about this one, but his partner died years ago & I don't think he or his current partner have aids. Like a prior post that pos2007 said, They are in denial here and the Baptist and Penticost preachers preach that HIV is God's punishment to the queers. Odd thing is, everyone I have learned about that has aids down here is married business people Like me. Been married 2 my sweetheart 25 years.
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Interesting you suggest typing in the zipcode for support in our area , Or maybe someone else suggested it to, I can't remember, but I did that last night. I typed in 63801, then the next biggest city in the area Poplar Bluff, then 63701 which is the biggest town 30,000 ...and I got a zero for the number of hits.
Mopos
There's an option to expand the search distance in the directory. It does look pretty sparse though -- only county health departments show up for miles. But looks like there might be a group where you could meet up with other people in person about 40 miles away.
Name: Kentuckiana People with AIDS Coalition (KIPWAC)
Location:
3805 Hobbs Rd
Kevil, KY 42053
Phone: (502) 462-3828
Fax: (502) 462-3828
URL: www.kipwac.org
Pos2007, sorry if this is a hijack, but it sounded like you live in the same area and might find it helpful too.
A
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Assurbanipal, I don't consider it a hijack. We are all here to help each other and that's what it's about right? I had heard that they were trying to get a local support group started in Cape Girardeau , Mo, but being in many organizations around here I know no-one would show up. Also you can imagine how people gossip in a small town rural area, true or not, they love to spread the rumors. I found another post where no-one was showing up at the Poplar Bluff (80 miles from me) support group that I didn't even know existed. probably because of the small town gossip and no-one to guide them there either. Thanks for the link. I'll check it out. Kevil is a small town with 574 people . I drove through there the other day. About an hr & 10 minute drive.