POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: ByTheBay on September 29, 2009, 09:23:33 pm
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Dear members,
I am still in shock at what has happened to me in the last week, and would like to know if anyone out there has (or has even heard of) a similar story.
Back in March 2009, I had a negative HIV test (blood) when I saw my doctor. Then in May 2009, I had an oral HIV test, also negative. On 9/17/2009, I saw my doctor for a regular physical, and requested an HIV test. They called me to come in for results 4 days later (not a good sign) and told me that I had tested HIV positive. I was in shock, as I have not had any unprotected sexual contact since my last two negative tests. The case manager explained to me they would next take a blood test to determine CD4 count and Viral load, which would be used to monitor my condition, and make a decision about starting meds at some point in the future.
The next day (Saturday) my doctor emailed me to say that my CD4 count was 53 at 10%, and that I needed to get to the hospital to pick up prescriptions to prevent opportunistic infections like PCP, KC, Toxo, etc. All of the diseases that you never hear about anymore. My CD4 count put me in the full blown AIDS category just months after negative tests. I've started on the antibiotics as instructed.
There was a concern that the CD4 test was incorrect, so on Monday they had me come in for an additional CD4 test. The result was 62 at 7%.
I am still waiting on the viral load test results, which will not be in for at least 2-3 more days.
Has anyone ever heard of such rapid progression to AIDS? My doctor and case worker have both been in the field more than 20 years and are at a loss to explain what is going on. They have calls into public health officials and infectious disease specialists to try to get some answers.
We are planning to start on anti-virals by next Monday, if not later this week, as soon as we get a viral load back.
Any feedback at this point would be a help. History:
Approx every 6 months, negative blood tests
7/01/2008 Tested Negative - blood
3/17/2009 Tested Negative - blood
5/22/2009 Tested Negative - oral
9/17/2009 Tested Positive
9/25/2009 CD4 count 53 / VL pending
9/25/2009 Diagnosis of full-blown AIDS
9/26/2009 Began OI suppressing antibiotics (Septra/Bactrim and Rifabutin)
9/28/2009 CD4 count 62 / VL pending
I am trying to keep the best attitude possible, and know I can get and remain healthy.
Thx
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BytheBay-
Sorry to hear of your results. I haven't heard of that happening ,I just wanted to wish you good luck.
Take care,
Snow
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Bythebay,
Sorry to hear about your recent experience. I had a similar experience. I had tested negative several times prior to testing positive. My CD4 came back at 147 (12%) and VL of 40803. My doctor, a 20+ year veteran in the field of HIV medicine, said it is not uncommon for the CD4 to drop to its nadir and then pick back up with initial infection (sort of like a shock to the system)...additionally, stress can greatly effect your CD4 count, so if you, like myself, were under a great deal of stress prior to the testing this might have had some effect on your count.
I spoke with a few people online and they provided me with a lot of insight (some frightening)... Although the CDC classifies CD4 counts below 200 and less than 13% as full blown AIDS, do not let this scare you like it did me. My doctor, considering other blood work and my health history, did not recommend Bactrim for me and my risk for PCP was low but did start me on therapy within a week after I got the results of my genotype. After 3.5 weeks on meds, my count went to CD4 380 (22%) and VL 207.
I have encountered others on this site with lower CD4 counts when they were diagnosed and their CD4s increased after starting meds. Unlike us, they didn't have a history of several recent HIV negative test results, so I they did have an over 50% jump in CD4 counts in a short period of time. I am sure (or at least hope) you will have a similar experience and your count will be up above 200 after you start your meds.
I get my second count after meds, next week and I hope to report more promising news.
Hang in there buddy... I know it is rough but believe me it gets easier.
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Hi Bythebay,
Sorry to hear about the diagnosis. I am sure you are in shock.
In time you'll see that labels such as "full-blown aids" don't mean much these days and not in your situation especially. This is hard to understand when you are handed such violent "numbers" from health care, and also go out on your own to educate yourself. If you have not had an immune related infection or health problem, and are now on the antibiotics, you are HIV+ but haven't really been diagnosed with "full-blown aids" as you or society may have once understood that devastating "diagnosis". With the prophalaxis and then with HAART the prognosis is pretty fine now.
What is much more important than labels is your question about rapid progression. You can read my numbers below and see that you are NOT alone in this experience. It's rare but must happen around the world to quite a few of us... You are very lucky that doctors are aware of your body's lack of ability to fight the HIV effectively.
Two specialists who saw my numbers said its a genetic crapshoot - I just couldn't fight it very well, and certainly not very quickly. My HIV ID said he had seen very few in his career so far, but its not unknown.
Interesting, after a few months on HAART, he said it did appear that my immune system was "contributing" to the success of that HAART. A year after starting, the HAART is a complete success, says he, by the way.
Feel free to PM me to share your experience or with questions about it, or about how I dealt with a similar event.
Interesting that I had quite similar pre- HIV+ experience - couldn't identify the risk in the window of the seroconversion - but had for a year been once or twice concerned that I had been infected, yet had negative tests. And very very good tests at that.
Its curious if your immune system has gone so low so quickly, that you don't mention an obvious sign of seroconversion, in your post. My seroconversion was violent. And then the acute phase never really ended. I could feel myself slowing down, even though I had not specific dramatic problems for about 2 months. Then I really really slowed down. A week on HAART changed that radically, back to normal.
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Its curious if your immune system has gone so low so quickly, that you don't mention an obvious sign of seroconversion, in your post. My seroconversion was violent. And then the acute phase never really ended. I could feel myself slowing down, even though I had not specific dramatic problems for about 2 months. Then I really really slowed down. A week on HAART changed that radically, back to normal.
I was wondering the same thing. Is it possible you were going through seroconversion still? I have no explanation for the two negative results and then the positive result after not having any risks involved. The only thing I can possibly think of is whether you had any known risk days prior to your first test? Or what about the second one?
In any event has any of this been confirmed via a Western Blot test? If you were exposed just before your first test (you never mentioned the days) it is possible you had not seroconverted yet when you took the second one some time in May of 2009.
I know it's tough right now and I am sorry for your recent diagnosis.
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Hello bythebay,
Sorry about the positive diagnosis, but welcome to our forums. I believe I have read of a couple of people who had recently tested negative and then had mad numbers for their CD4 and VL when testing positive (one of our members, mecch, immediately comes to mind --he'll probably share some of his experience with you). Usually it has been in the hundreds as mentioned by Tony. Given that the "normal" range for CD4 starts at 500 perhaps you were around that range while still negative.
I would imagine that your viral load will probably come back with some fairly high values, so don't be too alarmed when you get them. The initial infection wreaks havoc within our systems causing some values to look quite scary (my initial %, just a couple of weeks after infection, was 13%, which also placed me below the so-called guidelines --my CD4 absolute value was however above 400).
Just out of curiosity, did you experience a particularly rough acute infection/seroconversion?
The good thing is that you have caught this before an OI impacted you. Now you will just need to get all the necessary tests and discuss options in case you want to start meds.
Stay strong and keep the good attitude that you seem to have.
Wishing you great health,
m.
edit: I see that mecch posted while I was writing this.
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Thanks to everyone for sharing your thoughts -- it has been helpful to hear since I am at a loss for information.
My test results were confirmed by Western Blot.
Thinking back, I had a cold that did seem to want to go away back in January, and did have what I thought was the flu towards the end of March. Didn't think it was sero-conversion though, but it may have been.
The last 5-6 months, I have never felt better. Great energy, sleeping well, no symptoms at all. Still hard to understand how my CD4 count fell so low so quickly, but I understand that is just one number and not an overall indicator of my health. I'm confident with the right antivirals it will be high again and I can get off the Bactrim.
I will post my Viral Load numbers when I get them.
Thanks for the feedback.
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Hey mate, sorry to hear your news, but take a look at my post "Just want reassurance". I did not get a test until I was seriously ill, and was gien 2 days to live. That was in July, but I am still here. Life still goes on, a lesson I have had to learn the hard way. Dont worry about the meds. If you read the site there are loads of people who are on ART and have had few if any side-effects, me included, and they do work if your doctor gets the right combinations. Your biggest hurdle will be the emotional feeling, but again you are not on your own with this. I have found that folks on this site have been a tremendous support to me. Just yell, even if it is to have a moan, no-one minds. You can always PM me and unload if you feel that that will help.
stay strong, chin up, there is still lots to be grateful for.
Rob
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Hey ByTheBay: I was pretty much in the same boat as you when I tested positive. I didn't have the prior negative tests as the thought of being tested never entered my mind. I did have a minor case of shingles which the doctor put down to being under tremendous stress from work and living conditions. Months later I had some minor skin rashes (just dry skin and lots of itching) which they thought were allergies. Other than that I pretty much felt a 15 on the 1 to 10 scale healthwise. I could (and still do) run circles around guys half my age. I was lucky and read a newspaper article which listed all the symptoms I had and lead me to get tested. Although I only started to get the night sweats two days after reading the article. I was pretty sure I was positive before (due to the article) before getting tested. CD4's were 21, CD4to CD8 ratio was 0.0 and viral load was 500,000+. Besides being into full blown aids they figure that I was recently infected a second time. Being HIV+ was expected but I was totally blown away by the aids/second infection classification.
I am still surprised at the number of us who get tested and are full blown aids without being terribly sick. Most of the people on here either get tested regularly and have CD4 counts just under the HIV classification or are tested while they are seriously ill and have pretty low numbers. Both of these are understandable.
Although I am very greatfull that I have never been seriously ill or had an opportunistic infection I still wonder about it. To me it's like cutting your finger while preparing dinner. You look at it and decide that you might need a stitch or two. You go to the hospital for stitches and wake up 4 days later to find out they amputated your arm.
I'm glad your here as these people will give you lots of support and tons of information
Dale
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People who assume they are negative or never bother testing for years and then test and have dire numbers are not necessarily at all "in the same boat" physically as extremely rapid progressors. Emotionally, maybe. Maybe not. The shock is real, but remember, people who have been consistently negative for years, and confirmed so, and suddenly positive and bad numbers are having a different experience.
Also, if you've had HIV infection for years and never noticed, and finally get the news, and then the further news that you have AIDS, as is the case for quite a few members here, your body has had a very different experience than someone who seroconverts, can't fight it, and goes on HAART within months.
Just to clarify the issue.
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hello bythebay------you have been given excellent clear stories & advice,try and hang on the fact that you have no OI , your case is unusual and all branches off medicine have unusual events.Because you have had a rare beginning does not mean all your future tests will be.I have felt great and received disappointing results felt dreadfull and received great results. Take care Theyer
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ByTheBay, I don't have any new info to contribute but wanted to say I'm sorry to hear your news + wanted to welcome you to the board. Take care, G.
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Happened to me in 1997 very quick and I didn't have a chance maybe you do to stay out of the hospital my friend. there are some evil people out there that will do anything to anyone so protection should have been the word that day. or maybe you got it some other way. i don't know your particulars my friend. Hope all goes well for you now that you know. Love to all
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hi bythebay,
like others i wish you the best of luck and hope you find the forums useful and supportive.
one question -- have you had any OIs or other indicators of immune system problems before or after your positive test results? oral thrush, rashes, unusual infections (unusual for you, that is -- like a yeast infection or something you've never had before), or anything else?
i ask because, given your extremely low CD4 counts, many HIV+ people would have "full-blown AIDS" WITH OIs and other immune system problems. it seems from what you've posted you've been feeling fine and haven't had any signs of problems other than the CD4 counts. i doubt it will make you feel any better but the only reason i have "AIDS" is my CD4 count went below 200 sometime in 2003 or 2004 -- i was between doctors and too lazy to get a new doc. by the time i did my CD4 had slipped below the magic number (i.e., 200) but i've never had any other indicators of immune system problems. no thrush, no shingles, no PCP or any pneumonia, etc. i've been poz since the mid 1980s and it took about 20 years for my CD4 count to slip into the danger zone.
if you haven't had any other indicators of immune suppression i hopefully suggest your CD4 count is frightening but not an accurate measure of your overall health. when my CD4 came back at 159 in late 2004 my (new) doctor prescribed bactrim and a couple of other prophylactic drugs. i also began HAART (or whatever we call it nowadays... ) in a clinical trial for twice a day trizivir, which is usually considered less-than-optimal since trizivir is a combo of 3 NRTIs - AZT, 3TC, and abacavir. treatment guidelines usually suggest a combination of NRTIs, NRRTIs, and PIs (and whatever new ...Is are out there) but at 5 years i'm still in revoltingly good health with only trizivir.
although viral load is obviously an important component of the "snapshot" of your current status again i hope you have had no OIs or other problems. to me overall health is the best measure of the stage of AIDS one is in/at. so, again, i hope the only symptoms of HIV infection for you have been the puzzling + test result and the low CD4.
i DO NOT recommend doing what i'm about to divulge but the fact is i filled the prescriptions for bactrim and 1 or 2 other drugs but took only the trizivir because i wanted to know how i would react to those drugs before throwing others into the mix. also, since i had/have never even experienced thrush/candidiasis or any of the "early" warning signs i gambled and luckily i'm OK. my CD4 count went past the 300 mark for the first time since 2002 in april (2009) and tomorrow i'll find out what my latest blood work results are but don't expect any surprises.
my doctor has threatened to stop seeing me because i don't want to get blood work done every 3 months (so i don't...) but he insists i should. we may have a showdown tomorrow but i'll simply point out my vl has been undetectable since early 2005 and although low my CD4 count has gone up incrementally & slowly i'm in good health. and i'm taking a non-optimal drug regimen so he can *&@(*#*& up his #$&! if he thinks i'm going to bow to his demands. i think he just wants the $$ from my medicare plan and as a frugal citizen concerned about government waste i refuse to contribute more than i already do.
excuse my mini-tirade, please. good luck!!
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Hello,
I will keep this brief as I'm starting a thread on something similiar, but i also seem to have had a horrendous time only months after seroconvsersion. You are NOT alone, and i completely understand the shock and demoralization factor. It's hard to read other ppl's tremendous success stories (although i'm very happy for them), when confronting your own body in mutiny. I will start a new thread here, but please know that others out there are experiencing the same thing and even if we can't give experienced advice, we can lend a caring ear...
I hope you're feeling better! Truly....
Larry
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Wow bythebay, what a story. I dont have much advice since I'm only 3 months into this but my heart goes out to you for such a reversal. Know that you will find many knowledgable people and lots of support here. Keep us posted on you things are going and ask for any information or input you need.
- Dave
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ByTheWay. By no means I am a doctor. You will get more answers when they perform the test where they find out what kind of virus you have. Of how it can replicated so quickly, via ten-fold. They will do more tests on you, and will give you a better outlook, and there might be a potential explanation.
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Update: I got my first piece of good news today: My genotype results are back and my virus is considered "Wild type" which means it has not developed resistance to any drugs. It is also sub-type B, which is the most common, and also (from what I understand) the sub-type used to test and develop meds.
I am on day 4 of my meds: Truvada/Norvir/Prezista and so far have not had any side effects. I have been somewhat exhausted, but I think that has just been due to stress.
My first viral load test should be back tomorrow (yes, my genotype came back before my first viral load!). I have a feeling that it is going to be sky high, given my rapid progression (from negative to full blown AIDS in less than 6 months) but the good news is that there is no reason I should not respond to meds like everyone else.
I am taking the advice given to me, "Do not put too much stock in any one number or any one test result since they are influenced by many factors and will naturally fluctuate over time". Rather, I am going by how I feel, and to tell the truth, except for the stress, I feel fantastic! It is taking me some getting used to taking 7 pills a day, but the alternative is far more scary.
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I have been somewhat exhausted, but I think that has just been due to stress.
Can also be what's called "immune reconstitution" and can go on for a while because you're body, due to the meds, is building itself back up. Anyway, try not to let it depress you.
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Has anyone ever heard of such rapid progression to AIDS? My doctor and case worker have both been in the field more than 20 years and are at a loss to explain what is going on. They have calls into public health officials and infectious disease specialists to try to get some answers.
In a word, yes, it is known to happen.
I believe this mainly due to genetics. Some individuals are naturally more or less resistant to HIV than others. You are one of the unlucky ones unfortuntaely.
My bf had a negative test in april 2006 and tested positive in november 2006, with CD4 300 and 13%, VL 4000. The 13% meant AIDS too. Like you, he felt fine. His CD4 later went down to 230 and 9%. He had to start Atripla.
Meanwhile, 3 years later I'm still not on meds myself, with the CD4 / % / VL numbers in my signature. We have the same virus (same genotype), and I believe I passed the virus to him early when I got it, before I tested positive on the antibody test. Regardless of who got it first, we both had negative and positive tests at the same time so we both were infected during the same period, with the same virus.
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but the good news is that there is no reason I should not respond to meds like everyone else.
Well considering the shock and awe of the experience, congratulate yourself on holding it together.
If your immune system is like mine, maybe with the drugs doing most of the work, your system can eventually contribute, as well. That's what my doc says is happening with me. Maybe he just said it to make me feel better. The bottom line is the drugs work, and fortunately you haven't had HIV so long to have much damage anyway, if I understand the prognosis correctly.
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Update: My Viral Load number is back and it is 57,305 which is much lower than I thought it would be, given my CD4 count of just 53. I was expecting 500,000+ so maybe my immune system is able to fight at least a little bit :) This is my second day of good news! (yesterday was Genotype news is good). I'm having pizza to celebrate (along with my Prezista/Norvir/Truvada :) Hope everyone else has something equally good to celebrate tonight, healthwise or otherwise!
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Don't focus too heavily on the term"AIDS": it's such a loaded, emotive term. My doctor doesn't use it for this reason and because it's possible to 'pull back from the brink' now with modern drugs. He says "AIDS" is a term that's best used by researchers charting the epidemic, rather than as a diagnosis to be given by doctors. My lowest CD4 count was 37 (6%) and now I'm 407 (15%), after a year; once you're on a good combination you'll see your numbers rise and your health improve. The main thing to focus on is that you've caught this before you developed any of the numerous grotty illnesses that affect those with low CD4 counts and you needn't ever experience any of them.
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Update: Well I've been on my meds for 18 days and it has been rough, but gotten better. As my Dr. warned me, I did develop IRS (Immune Reconstitution Syndrome), which included flu-like symptoms, fever, and a headache like nothing I have ever experienced (10 days of a headache that would not go away). But the must unpleasant part was a metallic taste in my mouth -- made all food taste terrible.
I am very happy to report, however, the IRS went away after 2 weeks, and the metallic taste went away soon after, and even the headache went away. I am pretty much back to feeling "normal". I have a few more weeks to go before labs to confirm if the meds are working, but am keeping the best possible attitude. It was a big help to read almost everyone say that it takes 2-3 weeks to get used to meds and the side effects do go away. I can say if my side effects are gone after 2.5 weeks there is hope for ANYONE trying to adjust. Hang in there!
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BytheBay, glad to hear you are doing better. :)
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Good news.
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Pleased to read your news, enjoy the pizza.
Theyer
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ByTheBay - How are you doing so far with everything.
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I too tested neg 6 months before diagnosis, My CD4 was not low like yours it was like 490 or 390. I can't remember but my vir load was 52k like yours. I think you will be fine. Give yourself all the rest you need and take it easy. HIV messes with your brain sometimes.. that is what is great about this board. alot of brains to bounce things off off.
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Update: Well, the only thing about my case is that it is puzzling to my doctor. (I live in San Francisco, so have access to some of the most experienced HIV/AIDS resources in the country).
I've been on meds for 4 weeks now: Prezista/Norvir/Truvada. Just did a set of labs, and there is almost no change in my CD4 count. (53 to 67). My CD4% did increase from 7% to 15%, which is a good sign. My VL was 57,305. New VL should be back by Friday this week. Keeping fingers crossed. As a reminder, these low numbers are 4-6 months after my last negative HIV test, so I "skipped" HIV and went right to AIDS.
My question for the Board: In the 4 weeks since starting meds, my WBC has decreased from 5.5 to 3.5 (or 5500 to 3500, depending on how your test results are reported). Does anyone else recall a drop in WBC when starting meds? Is this a good or bad sign?
Keeping a good attitude!!
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I think you were still in sero-conversion. I use to think it took years after someone was infected before they could pass it on to someone else. I thought I'd know who had HIV by looking at them. I've learned you are the most infectious right after you get it.
Statistics show most of us don't find out we have it until many years later. Most people aren't getting tested regularly like you. I believe I was infected in 2001. I had the mono-like illness with very sore and swollen lymph nodes and soooo tired. This lasted for a couple years. I got more energy back, but the lymph nodes stayed swollen for several years actually. I'm sure my CD-4 at that time would have registered a very low number and viral load very high.
What I have read is that when someone gets infected, their CD-4 goes down...way down. However, you usually don't see those people getting AIDS defining illnesses like PCP-pneumonia, because their immune systems are still really good. I'm dealing with when to start meds. My CD-4 is 800 and VL 14,000--not on meds. If I really was infected 8 years ago, I wonder whether these "good numbers" are a false sense of security. I've read the immune system has unseen damage--inflammation. This is due in part to the immune system being damaged by HIV and being on a hyper-state all the time....always on red-alert.
It would have been interesting to see whether your CD-4 rebounded and you didn't really need to start meds so soon. Having said that, you may be saving your immune system from all the damage by starting so soon. I got strep-pneumonia last December after a flu. That's when I found out I was poz. So, even though my numbers are "good", I think there is damage there. My CD-4 while sick was 171. I, too, was told I had AIDS. When I got better, my CD-4 rebounded to over 1,000. They actually thought I had a false/positive. They said they were sure it was false/poz. So, when confirmed it was like being told all over again. Thebody.com has been a great resource for me. Dr. Young and Dr. McGowan answer questions on when to start meds and so much more.
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By the Bay.. hey just do the best you can... When I was diagnosed back in 1991... I prepared to die... here I am today so you never know and my cd4 count is 1598 non-detectable viral load... your not the only one to have tested negative and found out they were positive later... the test have come along way but, nothing is fool proof... just be thankful you've found out in time... thats why everyone in this country and elsewhere needs tobe tested at least once per year... and not just for HIV but, STD's their rampant all over the world!
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that is very scary...God bless u :(
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I agree with TednLou2. Starting two months after I became infected and continuing for four months after that, I had a very strange series of problems including swollen lymph nodes, flu-like illnesses, and a bizarre feeling that was sort of like being hung over all the time. It would not surprise me at all if my numbers were quite low at that time.
As you said, however, the fact that your doctor expressed surprise does suggest that your numbers were unusual; but then again, as TednLou asked, how many people get tested so soon after seroconversion?
Anyway, I'm sorry to hear about it, and I hope your numbers keep going up after this!
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Update: After 4 weeks on Prezista/Norvir/Truvada my viral load has dropped from 57,305 to 626 ! My CD4 remains low (67 and 15%) but my doctor is less concerned at this point with CD4, which he says can sometimes take weeks of a reduced viral load before an increase. I am thrilled to see such a response to my combo! Thanks to all for support
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Congratulations BytheBay! It's great to hear your VL dropped so dramatically. And the % of CD4s has improved too. It is puzzling why your WBC would be so low overall. Usually there's a spike in CD8 cells (which makes the % of CD4s lower as well) and WBCs remain in NL range. I felt pretty demoralized at having bad side effects to Atripla but it lowered my VL to nothing. despite having a distressing seconday infection (found out i had syphilis likely contracted at the same time as HIV) and some secondary symptoms, for which i got hospitalized and had intensive treatment, i have remained off meds and am hoping to stretch that out as long as possible. Thank god i now have a doctor who is more content letting me remain off meds, and doesn't hold that against me like the previous one did. My point is that you felt compelled to go on meds instantly, as I would have done too, but the fact you have remained otherwise healthy is terrific and you're still early into this infection. There's plenty of time for your system to recover more, and like me, your CD4s may never look as great as other folks. what counts is how you feel, physically and mentally and sometimes that's totally independent of the numbers.
Look forward to hearing how you're doing!
-M
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Hello ByTheBay,
I am sorry to hear about your diagnosis, but I can tell you that you have come to the right place. This forum is filled with so much information, although I have never heard of a case like yours. I wish you the best of the luck and just know that everything is going to be okay. Just listen to your doctor and take all prescribed medications just as directed. If you would like to chat, or need someone to talk to please feel free to hit me up. Everything is going to be just fine!
PY
Dear members,
I am still in shock at what has happened to me in the last week, and would like to know if anyone out there has (or has even heard of) a similar story.
Back in March 2009, I had a negative HIV test (blood) when I saw my doctor. Then in May 2009, I had an oral HIV test, also negative. On 9/17/2009, I saw my doctor for a regular physical, and requested an HIV test. They called me to come in for results 4 days later (not a good sign) and told me that I had tested HIV positive. I was in shock, as I have not had any unprotected sexual contact since my last two negative tests. The case manager explained to me they would next take a blood test to determine CD4 count and Viral load, which would be used to monitor my condition, and make a decision about starting meds at some point in the future.
The next day (Saturday) my doctor emailed me to say that my CD4 count was 53 at 10%, and that I needed to get to the hospital to pick up prescriptions to prevent opportunistic infections like PCP, KC, Toxo, etc. All of the diseases that you never hear about anymore. My CD4 count put me in the full blown AIDS category just months after negative tests. I've started on the antibiotics as instructed.
There was a concern that the CD4 test was incorrect, so on Monday they had me come in for an additional CD4 test. The result was 62 at 7%.
I am still waiting on the viral load test results, which will not be in for at least 2-3 more days.
Has anyone ever heard of such rapid progression to AIDS? My doctor and case worker have both been in the field more than 20 years and are at a loss to explain what is going on. They have calls into public health officials and infectious disease specialists to try to get some answers.
We are planning to start on anti-virals by next Monday, if not later this week, as soon as we get a viral load back.
Any feedback at this point would be a help. History:
Approx every 6 months, negative blood tests
7/01/2008 Tested Negative - blood
3/17/2009 Tested Negative - blood
5/22/2009 Tested Negative - oral
9/17/2009 Tested Positive
9/25/2009 CD4 count 53 / VL pending
9/25/2009 Diagnosis of full-blown AIDS
9/26/2009 Began OI suppressing antibiotics (Septra/Bactrim and Rifabutin)
9/28/2009 CD4 count 62 / VL pending
I am trying to keep the best attitude possible, and know I can get and remain healthy.
Thx
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Update: Just had my second set of labs, and the results make no sense to me. After 11 weeks on meds my CD4 has actually decreased despite a 99% drop in VL. The current numbers (as seen below) are 56 (10%). My CD4 does not seem to be responding even though my viral load is way down. My current VL is pending, will take at least 5 more days to come back from the lab.
Anyone have any ideas?? I have not seen a case like mine where progression to full blown AIDS was in less than 6 months after a negative test, AND now CD4 showing no response after 11 weeks of meds.
Wild guesses are welcome at this point!!
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Update: Just had my second set of labs, and the results make no sense to me. After 11 weeks on meds my CD4 has actually decreased despite a 99% drop in VL. The current numbers (as seen below) are 56 (10%). My CD4 does not seem to be responding even though my viral load is way down. My current VL is pending, will take at least 5 more days to come back from the lab.
Anyone have any ideas?? I have not seen a case like mine where progression to full blown AIDS was in less than 6 months after a negative test, AND now CD4 showing no response after 11 weeks of meds.
Wild guesses are welcome at this point!!
It's only 11 weeks of meds. The CD4 increase usually happens after the virus is suppressed. It can take months or years before your CD4 will peak. See if your virus is suppressed yet when you get your VL. If so, then you probably just have to give it time before you will see more of a CD4 increase.
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also starting therapy will very low cd4 doesn't always mean you'll ever get a huge increase back.
I started meds in 1996 with 5 tcells. over the last 15 yrs my avg has only been 176. It took nearly 9 years to finally get over 200 (and longer than that to reach undetectable). the two high peaks have been 305 and 311; while the avg over the last 5 yrs has finally improved to 243. (and I've only had the flu twice in nearly 20 yrs, and only 4 colds)
it's not how many tcells you have per se; but how well they work. ;) Madbrain is right though. Get your viral load suppressed and give it time. Hopefully, you'll be one of many to get a good jump back in your cd4s but don't be too downhearted if they don't. Without any prior testing, you actually don't know but you may have always have a lower than average tcell count anyway.
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Update: My VL came back yesterday: Undetectable :) I am very happy about that, and understand that I need to be patient to see an increase in CD4. I'm going to keep taking my meds and just wait. Being patient is not easy for me but I am trying.
An interesting twist: According to the CDC classification system, I now have full blown AIDS and an undetectable viral load at the same time!
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Update: My VL came back yesterday: Undetectable :) I am very happy about that, and understand that I need to be patient to see an increase in CD4. I'm going to keep taking my meds and just wait. Being patient is not easy for me but I am trying.
Congrats about being undetectable.
An interesting twist: According to the CDC classification system, I now have full blown AIDS and an undetectable viral load at the same time!
The CDC does not use the term "full blown". The definition for AIDS does not take viral load into consideration.
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An interesting twist: According to the CDC classification system, I now have full blown AIDS and an undetectable viral load at the same time!
I just ran back through this thread and did I miss something? Have you been diagnosed with an opportunistic infection
If not, you really don't have "full blown" anything. ;D in 93 when the CDC expanded the definition to include people with <200 cd4 cells that was mainly to aid in getting treatment to people sooner than forcing them to wait until they were deadly ill with an OI. You might be defined now as having AIDS but don't get hung up on that "full blown" part until you're lying a hospital struggling to stay alive. ;) ;D
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The term "full blown" really makes my skin crawl and I wish people would stop using it. It's so 1980s. ::)
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The term "full blown" really makes my skin crawl and I wish people would stop using it.
I understand it's an out-dated term, as hardly anyone reaches such a dramatic point as they did in the 80s and into the early 90s, and I understand that many here don't like the term; however, I still think it's applicable when trying to explain the full thrust and impact of being literally deadly sick because of HIV.
In 1996, when I had 5 tcells, 800,000-something VL and was lying in a hospital bed with PCP and IVs in both arms, 3 doctors telling me to call my family because I was probably going to die at any moment (not to mention not being able to suck in enough O2 and feeling like I was about to die), trust me - THAT was "full blown" AIDS. (and it wasn't the good kind of "blown" at all! ROFLMAO)
In 2008, when my partner was in the hospital for 60 days unconscious and/or delirious with 2 tcells, over 1 million VL, 3 tumors of AIDS-related non-Hodgkins lymphoma, with a surgically-installed port for the IVs dripping blood transfusions, cancer chemo, antibiotics etc, that was "full blown" AIDS.
However, when I lived for 7 years with an average tcell count of 145, that was just plain ol' "AIDS". I guess I could have gone back to just saying I was "HIV+" once I got over the 200 count; but since I've used the "AIDS" label for so many years to explain how sick I was in 1994-2003, and to apply for different benefits and assistance, that I'm just not that stigmatized or bothered to worry about how it's labeled anymore.
I guess, now that I've hijacked this thread this much about the subject ;D I'll continue a bit more, I would ask what other descriptor should be used instead of "full blown"? In general people kinda understand the meaning behind "full blown", while saying "the AIDS that so damned bad that you're about to die and you better get your relatives to your hospital bedside quickly" seems a little too wordy. "super bad AIDS"? or "deadly AIDS" vs "non-deadly AIDS"? There really should be some way to differentiate because being that sick, the creepy-crawley skin :D "full blown/you're about to die" AIDS kind of sick, is dramatically different from the "tcell counts under 200" kind of AIDS. I've lived (WooHoo! lived and survived!) through both and let me tell you it's more than the difference between night and day, it's literally nearly the difference between life and death.
Hopefully you see too, BytheBay, why I questioned your use of the "full blown" term. While it sounds like you have ever right to be troubled by such a quick change in your numbers after becoming positive, without ever having been sick with an OI and confronted with the possibility dying because you were so sick that you were hospitalized, I think you're just scaring yourself by applying that term to your condition.
I hope things continue to improve for you BtheB as we move into 2010. Don't let the low cd4 bug you too much, since you've already gotten to undetectable, stay compliant to your med regimen, always consider the trends of your numbers over several tests, and stay on the Bactrim (or whatever prophylactics your doc prescribed) until you get back above 200 tcells, and you should be able to just use the label "HIV positive" within a few more months. ;)
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First, I want to apologize to anyone who found the term “Full-blown AIDS” offensive in my post. I simply wanted to express the dichotomy between the following facts:
1) That my current numbers put me in a clinical diagnosis of AIDS (defined as a positive ELISA test for HIV, confirmed by a western blot test, with a CD4 count < 200 OR a CD4 % of < 14).
2)While at the same time, my viral load, as measured by the RNA method, is undetectable (< 75 cp/ML)
I would rephrase this as “meet the clinical diagnosis of AIDS, yet have a viral load of undetectable”.
In no way was I trying to use language which someone would find offensive, nor do I want to discount the suffering of people with an AIDS diagnosis and an opportunistic infection by using the term “full blown” to describe my own health, which has not included any opportunistic infections.
The term "Full-blown AIDS" was used by my case manager, an HIV professional with more than 400 patients, when I got my test results.
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The term "Full-blown AIDS" was used by my case manager, an HIV professional with more than 400 patients, when I got my test results.
you'll find that most case managers aren't HIV poz, haven't never suffered with the effects of HIV and don't always know what they are talking about. Just like many ID doctors have never taken HIV meds and have no clue to what the side effects are like. Reading in a book or hearing something in a lecture is one thing, living it is a whole other ballgame. As time goes by you'll probably find out just how uneducated case managers, ID doctors, nurses, and hospital staff are about HIV. Their ignorance can be un-nerving at times, unbelievable all the time, and almost deadly some of the time - unless you chose to stay on top of knowing the most about a disease that affects you the most.
(if you don't believe that doctors can be so uneducated about HIV/AIDS, check out the "Am I Infected? forum sometime to read some of the nonsense doctors, nurses, and hospital staff tell those people :D)
My case manager is the nicest lady, she's been on the job almost 6 yrs. and has about 400 clients too - but she wasn't even born until three years after I was infected. ::) When I was taking AZT and burying my first partner she was only 15 and still in high school probably never imagining that one day she'd be an HIV case manager in a small clinic in SC. I talk to her about a lot of my problems but as she's never had to deal with trying to get disability, welfare, food stamps, etc, I take everything she says with a grain of salt and look for the answers to my problems on my own. Sometimes she helps and sometimes I know more than her.
and FYI I wasn't and I'm not ragging on you about using some term, I was just trying to cheer you up and keep you from fretting too much about your situation as you are miles away from having anything like full blown AIDS. (sorry Ann) You just have a low cd4 count and thankfully an undetectable VL. Goodness knows, I had under 150 cd4s and didn't get to undetectable for over a decade on meds meaning I had "clinical" AIDS for 15 yrs. I just didn't want you to get too hung up on labels. Labels don't kill you, opportunistic infections do ;)
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The general population doesn't see much difference between some who is "HIV+" or "has AIDS" or "has the AIDS" or whatever. Slowly things are evolving I guess.
Do you realise it is 2010 now and HIV is a chroinc treatable disease for many, and I can't think of one regularly in the news public figure, besides Magic Johnson, in America. And we don't see too much of him on the education front, explaining the difference. Public opinion polls about the HIV travel ban were often in favor of continuing it.
Point: I wish you a good year and I think within the next few months you'll see that the "full blown AIDS" is in your case a dated mind trap. When your CD4s climb up again you'll breathe a big sign of relief.
As a little experiment you might try opening this thread a year from now, on Jan 1 2011 and posting about your evolving identity as an HIV+ person.
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Yeh man, seen it happen a lot in West TN. And I do know how you feel. I do think tho', you should check the rep of the lab they use? Results like that have me questioning the lab for rep, and also wondering the strain of the virus? Are you being checked for sensitivites in all of the meds? The earlier meds as well as current ones? They did panels like that for my wife.
Also, going from neg to such a huge decline in CD4's is freaky and play hell with alot of daily stuff at times. You are your own best advocate and "doctor". You'll learn to consistenly keep an eye on yourself for med reactions, food reactions. Smoke? Drink? Use "recreational" drugs?