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Author Topic: What Went Wrong...doctors got no answer  (Read 8501 times)

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Offline liverpool77

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What Went Wrong...doctors got no answer
« on: November 12, 2008, 02:39:16 AM »
Hello there, I have tested negative 1,2 and 4 months on the eliza gen 4 antibody/antigen....i requested that they test and give me the results on the same day....every test i did...i received the result 2 hours after testing....all were negative....i tested out of fear because of having multiple unprotected sexual intercourse with freelance prostitutes. However the real reason i got tested was my last encounter was with a pros who was having her mensus...she only told me after the intercourse.


It's been 2 years since that incident and i started having classic early stage symptoms....my left eye suddently been hit with floaters....i saw an eye specialist who was preplexed that i suddently had floaters....it's been a nagging problem that won't go away...apart from that both my legs were covered with brownish spots which dont go away....it looks like early stage KS....where the skin is forming dead cells....and having gangrene....for no apparent reason on the ankles,foot....small spots, big spots....i also suffer from stomach bloating.the most evident of symptoms was the white tongue...when checking with the local HIV expert....he said get a tongue culture test....it tested positive for candida albican....so he suggert one more test.....soon i got the test....and my worst nightmare was confirmed....

My question is how can a person get repeated negative result 1,2,4 months and no other exposure or incident and to get a result like this 2 yrs later...it was devastating....how did the tests go wrong the first 3 times....i have no autoimmune problems.....my doc said that's why some people still need to get tested at 6 months if clinical systems of hiv are seen in the subject.....anyone here can give better advice ?

Offline RapidRod

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Re: What Went Wrong...doctors got no answer
« Reply #1 on: November 12, 2008, 06:27:53 AM »
You are trying to say that you tested at 4 months negative and 2 years later you've tested positive over a risk 2 years ago? Sorry not buying your story...

Offline Andy Velez

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Re: What Went Wrong...doctors got no answer
« Reply #2 on: November 12, 2008, 08:37:16 AM »
I'm with Rod on this one. It simply doesn't make sense. But if you are actually HIV positive then this thread belongs in another section of the Forum.

Please confirm that you have received a diagnosis of HIV positive. If you really are HIV positive now then the most imporant thing is for you to concentrate on getting appropriate medical care.

Focusing on your proper medical care is more important than looking back to what the details were of your history, which is really something I don't see us being able to answer.

Stick with focusing on what you need now to get and stay healthy.

Cheers. 
« Last Edit: November 12, 2008, 08:46:45 AM by Andy Velez »
Andy Velez

Offline markaj

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Re: What Went Wrong...doctors got no answer
« Reply #3 on: November 12, 2008, 01:52:15 PM »
Everybody in the world would test positive for candida after a mouth swab because we all have it in our mouths!  A white tounge could be caused by lots of different things.  Floaters are common and nothing to worry about.  The ELISA tests used will detect antibodies within 8 weeks for 95% of people, in some instances it may take 6 months and in very rare cases, longer for antibodies to develop.  Sorry, but two years does seem rather far fetched.  It looks like you've been busy reading up about OI's, CMV retinitis, KS etc and scaring yourself silly.  If it helps go to an optician and get them to take a picture of the back of your eye, they will soon tell you if anything is wrong.  Stressing yourself out is certainly not going to help you one bit.
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline mecch

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Re: What Went Wrong...doctors got no answer
« Reply #4 on: November 12, 2008, 02:11:48 PM »
Read your post -- and want to start with saying I am sorry to hear that you are positive and facing so many health challenges.

I guess you don't want to hear responses that question your story these last two years.

But what members are waiting for is for you to write clearly that you are HIV+.

If you are, then you will find lots of support about how to deal with the changes in your life in these forums.  How testing missed it is interesting, but for the moment quite secondary to you getting treatment for all the health challenges you have mentioned.  KS in two years??  You need a good HIV specialist to start treating you and explaining whats happening.

Best wishes
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline unlucky1

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Re: What Went Wrong...doctors got no answer
« Reply #5 on: November 12, 2008, 06:35:41 PM »
Hello mate

It can take longer than 3 - 4 months to show up - it's rare but possible, especially with subtype CRF A/E.

By the terminology you're using sounds like you've been to / are in Thailand? If you are in the UK HIV is promoted as a gay disease and they see us as low risk. If you go to a GUM clinic with any concerns they tell you HIV should be the last of your worries whilst all the leaflets are aimed at gays so you don't take a look.

They'll tell you the chances of contracting are 1 in 1500 but there have been more recent studies that show if you're uncurcimsised and the bird is recently infected with an STD it could be as low as 1 in 10.

Liverpool were fantastic in 77 btw, Alan Hansen and Graeme Souness were my heroes at the time.

This is my biggest nightmare too, I feel I've been neglected by our health service but there is hope. There's big advances in treatment and research.

Cheers


Offline jkinatl2

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Re: What Went Wrong...doctors got no answer
« Reply #6 on: November 12, 2008, 06:54:35 PM »
Quote
It can take longer than 3 - 4 months to show up - it's rare but possible, especially with subtype CRF A/E.

Please provide current first tiered peer reviewed science which corroborates/footnotes this, that AM may update the "transmission" lessons. As it stands, this thread and these assertions are in direct conflict with the information given in the AM I INFECTED forums, and if we are giving out dangerously incorrect information, then we absolutely need to correct this.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline unlucky1

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Re: What Went Wrong...doctors got no answer
« Reply #7 on: November 13, 2008, 04:40:18 AM »
It was from a doctor in London and from personal experience

PCR tests (not diagnostic but sometimes used to help in early detection where suspected in the UK and Thailand) in Thailand are 'primed' for subtype AE whereas they aren't in the west so people who catch it in Thailand can sometimes have to wait longer to find out

People in Thailand have told me it's 90% accurate at 3 months, others have said it's 99% at 3 months

This is one site that says it's 90% but it's not medically authoritative
http://www.thailandguru.com/hiv-aids-thailand.html

Even if you're one of the 10 in a 1000 that take longer than 3 months it still happens

Offline RapidRod

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Re: What Went Wrong...doctors got no answer
« Reply #8 on: November 13, 2008, 06:48:50 AM »
Subtype CFR A/E is from HIV1, Group M and can be picked up by all HIV tests that is maketed. There is no delay in diagnosing anyone with A/E. The tests are not looking for subtypes it's looking for antibodies. 

Offline liverpool77

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Re: What Went Wrong...doctors got no answer
« Reply #9 on: November 13, 2008, 10:38:57 AM »
So by moving this thread...you have admitted that the 3 month testing is not reliable for everyone....i am not from thailand...but i guess the gals could have had those subtype....not sure....but how can a GEN 4 antibody/antigen produce a false negative at 1,3 and 4 months on me ???? How the hell did that happen...i have a wife to protect and i thought these tests were very accurate....the symptoms i have are really worse now...prob because i did not start medication for over two years.....shall i report the hospital to CDC...maybe they screwed up with the testing procedure since i requested the results on the same day....not sure if a gen 4 eliza test can also provide results on the same day...andy, you always said 80 days was fine...but now look at me andy.....

Offline unlucky1

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Re: What Went Wrong...doctors got no answer
« Reply #10 on: November 13, 2008, 11:51:33 AM »
Have you had a positive result or just jumping to conclusions because of 'symptoms'?

Sorry to make the Thai assumption - I'd never heard the term 'freelance prostitutes' till I'd went there.



Offline BT65

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Re: What Went Wrong...doctors got no answer
« Reply #11 on: November 13, 2008, 12:06:51 PM »
It doesn't matter if you're HIV+ about past test results.  What I'd like to know is if you've had the Elisa test confirmed with a wester blot? 

About protecting your wife..... maybe you should think about using condoms.  Who knows what else you may have picked up.  You should have a full examination.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline jkinatl2

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Re: What Went Wrong...doctors got no answer
« Reply #12 on: November 13, 2008, 05:07:29 PM »
Quote
So by moving this thread...you have admitted that the 3 month testing is not reliable for everyone

By moving this thread the moderators decided to assume you are indeed HIV positive. That is all they have "admitted."

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline anniebc

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Re: What Went Wrong...doctors got no answer
« Reply #13 on: November 13, 2008, 05:18:42 PM »
Liverpool

Quote
So by moving this thread...you have admitted that the 3 month testing is not reliable for everyone

We moved the thread because we gave you the benifit of the doubt, there are only a small group of people who seroconvert after the 13 week window period, this group includes those who are receiving immuno-suppressive therapy after transplant procedures, cancer patients who are receiving chemotherapy and long term injecting drug users.

Quote
the symptoms i have are really worse now...prob because i did not start medication for over two years

Does this mean you are on HIV meds now? if so what meds are you on, maybe you are having problems with them..and can you tell us if you had an Elisa test confirmed with a Western Blot?.

If we knew what your numbers were and what meds you are on maybe we could be more helpful to you, that's how it works round here, you tell us what is really going on, and we in turn give you the advise you are looking for and help you to move forward.

Jan
« Last Edit: November 13, 2008, 05:35:09 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline madbrain

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Re: What Went Wrong...doctors got no answer
« Reply #14 on: November 13, 2008, 05:24:24 PM »
My question is how can a person get repeated negative result 1,2,4 months and no other exposure or incident and to get a result like this 2 yrs later...it was devastating....how did the tests go wrong the first 3 times....i have no autoimmune problems.....my doc said that's why some people still need to get tested at 6 months if clinical systems of hiv are seen in the subject.....anyone here can give better advice ?

First, I want to say that I am sorry about your new diagnosis. There is never a good time to get a positive result. It is always a shocker. In the US, it is now recommended that people who are sexually active test for HIV at least once a year.

Over a period of time as long as two years, it will be very hard and most likely impossible for you to figure out exactly what happened. You should prepare yourself to accept that you may never find out for sure exactly. But you may come up with a few theories / possibilities.

Assuming that you got HIV sexually and not through IV drugs, you will have to think about every sexual contact you have had during those last two years. Even if it was protected contact, do realize that in a small percentage of the time, condoms can break. Unless you check them every time, it's possible there was some slight risk. Unprotected oral sex carries some very slight risk too, especially if your oral health is not good (cuts, bad gums, etc).

If you had absolutely no sexual contact of any kind for the last 2 years, then you have my sincere condolences, and if so, there may be some serious reason to doubt the accuracy of the tests you received. But please confirm that is the case first.

Regarding your symptoms, you generally cannot go by symptoms to try to figure out what happened. Many people have some symptoms during seroconversion that go away. Others never do. Some people will then not be sick for very long periods of time. Others will progress quickly. There are just too many variables.

The symptoms you describe don't look like seroconversion symptoms, but more likely are the result of the virus having done some damage to your body for some period of time after you contracted it. That doesn't mean it's been two years that you had it, however. If you had other more recent sexual contacts, you may have contracted HIV 6 months or a year ago, and then if you are a fast HIV progressor, the virus could have done its damage and led to the symptoms you have now.

I will finish by saying that I wish we had much better HIV screening tests available that didn't take so long to give accurate results. Whether the current tests can be considered conclusive at 1, 2, 4 or 6 months, that is still quite some amount of time, vs having a test that truly could tell you right away if you were infected the day before. The amount of time the tests take has been the subject of some debate on AM in the past, and this is a topic that was hot enough to get me permanently banned from the "Am I infected" forum. The AM info says the tests are conclusive at 3 months. The CDC says it can take up to 6. Apparently some doctor in the UK says there are some cases where it's 6 too. It may be that scientists have not figured out all the parameters yet.

Your principal worry at this point however should not be that debate, but to to take care of yourself now that you are HIV+, get lab tests for your CD4 and VL, other STDs, and go on HAART if warranted.
« Last Edit: November 13, 2008, 05:26:07 PM by madbrain »

Offline liverpool77

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Re: What Went Wrong...doctors got no answer
« Reply #15 on: November 13, 2008, 09:41:29 PM »
thanks for the advice...i am in the midst of engaging a new specialist....yeah i did not have any sexual encounter after i tested negative..clean for two years,probably cause i went through alot during that last risky encounter so i stayed away from all sex....i got tested for a routine insurance check up and then the big shock followed.....but how could they keep testing incorrectly and giving 3 false negative results on a gen 4 eliza.....there are so many other people who moved on with their lives after a 80 day negative result..which is a gold standard to woo-hoo in this forum and many others....but what if the tests were not administered properly.

Offline BT65

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Re: What Went Wrong...doctors got no answer
« Reply #16 on: November 13, 2008, 09:51:41 PM »
You need to have the Elisa confirmed with a western blot.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline unlucky1

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Re: What Went Wrong...doctors got no answer
« Reply #17 on: November 14, 2008, 06:24:10 AM »
It makes me shudder when I see people who have had a significant risk and real symptoms being told that 3 months is conclusive, especially when their risk was in Thailand where a number of studies have concluded it's more infectious hetereosexually.

Dr Bob describes his criteria based on risk so if someone had a heterosexual exposure it's definitely conclusive at 3 months but if a receptive anal sex partner with a known HIV positive partner has an exposure then symptoms then it's 6 months.

I've seen him tell guys who had an exposure and symptoms in Thailand that 3 months is conclusive. Quite worrying if they are having unprotected sex thereafter.

My I first went to the NHS with my symptoms (Guillaine Barre syndrome, allergies to mosquito bites and all the other usual ones) the doctor told me I'd just have to wait and that could be 3 months, could be 6 months.

Once positive they said it was very rare but not exactly how rare. Subtype E could be said to be 'very rare'.

Over 20% of male heterosexual HIV in the UK is contracted in Thailand and the only reason it isn't closer to 80% is because of the number of African immigrants who test positive once they arrive in the UK.

Offline RapidRod

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Re: What Went Wrong...doctors got no answer
« Reply #18 on: November 14, 2008, 10:49:00 AM »
unlucky1 if you knew more about the transmission and testing then you wouldn't shrudder you would know. You can come and post your inexperence all you want which is totally incorrect. The guidelines by the manufacture of the tests, the FDA and CDC stays 3 months is conclusive. Those that are required to test later than 3 months know because they are being treated ie. chemo, anti-rejection drugs and chronic IV drug abusers and then most of them will test within the 3 month guidelines.

Offline unlucky1

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Re: What Went Wrong...doctors got no answer
« Reply #19 on: November 14, 2008, 12:16:49 PM »
an inexperience is still a real experience

even the most optimistic reports / stats whatever don't claim 100% accuracy for any test

in the future hopefully there will be tests that are a lot better than the tests we currently have, especially for any recent infections.

I took the girl I was with to the hospital and she tested negative, little did I know that meant nothing apart from she was probably more infectious than had she tested positive, by which time her viral load may have been lower

Offline madbrain

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Re: What Went Wrong...doctors got no answer
« Reply #20 on: November 14, 2008, 06:48:02 PM »
liverpool77,

thanks for the advice...i am in the midst of engaging a new specialist....

Good, that is the best thing you can do. I hope he takes care of you well.

Quote
yeah i did not have any sexual encounter after i tested negative..clean for two years,probably cause i went through alot during that last risky encounter so i stayed away from all sex....i got tested for a routine insurance check up and then the big shock followed.....

Sorry to hear. I found out about my bug during my annual physical. It was only 4 months after my last negative HIV test. It was a big shocker. But I had many more sexual contacts than you did.

Quote
but how could they keep testing incorrectly and giving 3 false negative results on a gen 4 eliza.....there are so many other people who moved on with their lives after a 80 day negative result..which is a gold standard to woo-hoo in this forum and many others....but what if the tests were not administered properly.

We don't know, because we just don't have enough information. And it's possible nobody does. Maybe somebody at your lab screwed up and switched the samples ? Did they realize their mistake later ? Who knows ? Let's say that somebody in this forum or elsewhere had the answer to exactly what happened in your case somehow. How would those details help you at this point ?

Would you choose to blame the scientists who developed an inaccurate test, or perhaps the manufacturer of the test who had a bad batch or machine, or the nurse for screwing up with the samples or results ? Do you think that would make you feel any better ?

Whatever happened, you are HIV positive now, and you need to take care of yourself just like any one of us does.

Some dogmatic posters seem to forget that this is a support forum, rather than a place to call others liars or worse. Please ignore them and continue to post.

I don't doubt your story. I have many questions of about my own HIV infection, exactly which risk led to transmission, which partner, and the suspicious timing of several of my negative tests in relation to some seroconversion-like symptoms, that simply can never be answered. If I had the answers, they would help me only if I had the ability to go back in time and do things differently. Unless you have that ability, please realize that this quest will not be very helpful. It may even drag you down and divert you from your real current problem, to get care now.

Offline HereIAm

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Re: What Went Wrong...doctors got no answer
« Reply #21 on: November 14, 2008, 07:46:35 PM »
Hi Liverpool,

Welcome here, in-spite of some of the uncharitable sounding responses.  I had similar questions as you.  Though, I have an explanation for my negative tests. 

I agree with madbrain, what does it matter why the tests were negative or where you were exposed?  The fact appears to be that you have the virus.  Accept that fact.  Learn about it.  Be the master of it.  Then, be the master of your own health and safety by learning about it, complying with treatment and being very careful about future exposures.  (I find this funny.  I feel, whether true or not, that I must be almost more careful now that I have only HIV about additional exposures to other HIV viruses and STIs).

But, again, welcome!
Regards,
Here!
Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline liverpool77

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Re: What Went Wrong...doctors got no answer
« Reply #22 on: November 14, 2008, 10:51:20 PM »
thanks all for the advice....i have not taken the western blot test yet...so hopefully the last test was also a false one....anyway i am prepared for everything.....but i have a question....if a person was truly infected by an episode 5 years ago....would he be very sick by now without any medication ? Apart from the unexplained high blood pressure that i have been having for 4 years....i am feeling normal....bowels are irregular....and those brown spots and floaters have never gone away but they never caused any pain or harm.....would a person who was indeed hiv positive be ok without meds for 5 years ?

Offline edfu

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Re: What Went Wrong...doctors got no answer
« Reply #23 on: November 15, 2008, 02:28:45 AM »
Everyone is different.  I was positive for over 20 years and was OK, with no problems, without meds...until I wasn't OK and needed meds.  I'm a longtime nonprogressor who finally progressed.   The time between infection and the need for meds is extremely variable and, for the most part, unpredictable.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Ann

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Re: What Went Wrong...doctors got no answer
« Reply #24 on: November 15, 2008, 09:35:37 AM »

i have not taken the western blot test yet...


Liverpool,

Until you've been confirmed as hiv positive with a Western Blot, you cannot be considered to be hiv positive. Given your previous testing history, and if it's true that you've not engaged in any sexual activities since you started counting your window period after the incident with a sex worker, then it's extremely unlikely you're going to test positive with the Western Blot. You tested far enough out of the window period that even an infection originating in Thailand should have been caught.

Auto-immune diseases can cause false positive ELISA results - and an auto-immune disease could be the cause of your physical symptoms. You need to be working closely with a doctor to find out what's going on. Given your prior testing history, it's unlikely to be hiv.

Until you've had your WB test results, you really should not be posting in this forum. I'd move this thread back into the Am I Infected forum, but there's just too much scare-mongering going on in some of the posts to do that. It would cause a riot.

Go get a Western Blot test done, get your results, then we'll talk.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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Offline jkinatl2

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Re: What Went Wrong...doctors got no answer
« Reply #25 on: November 17, 2008, 03:26:13 AM »


Quote
Some dogmatic posters seem to forget that this is a support forum, rather than a place to call others liars or worse. Please ignore them and continue to post.

Which is why me and many other LTS do not post here, nor in LIVING WITH, very much anymore. We are dogmatic because we also help out in the AM I INFECTED forum and we support this site ONLY because it adheres to scientific accuracy. To do otherwise is to set a dangerous precedent insofar as treatment information is concerned.

But that is of no consequence, sadly. As you have decided that I and others like myself are to be ignored. Feel free to ignore the LESSONS section as well, since that is in large part thanks to those who are "dogmatic."

It IS possible to support someone, yet not accept scientific fallacy as fact. I do not deny that it might be TRUTH, as the OP defines it. Hundreds, if not thousands of people log on unknown to scour this site for factual information -finding it, sadly, not on the LESSONS section but in the forums, where scientific accuracy is not always controlled. And there can be a real difference between the TRUTH as someone perceives it, and FACT, as science dictates.

How, exactly, would you propose to offer support for such a situation? Besides saying, simply, I am sorry you are positive, and that the particulars of your infection are immaterial to the facts as they now exist?

Or should we rewrite our LESSONS section each and every time a claim is made which contradicts them?

You tell me, madbrain, because I really do not know. I simply DO NOT KNOW how to give unqualified support to someone who appears to be in direct opposition to the scientific grounding upon which this site supposedly rests.

I defend the scientific evidence because it is on this, not support, to which I owe my life. Being nice and warm is wonderful, and there are people here who will do that. But should those of us who define ourselves through science and who have survived because of that science be ignored?

Ignore Tim and Peter and the others, then. Ann and Andy and Annie. Ignore the LESSONS, or pick and choose which "science"  you decide is fact, and which is not.

But do so at your own peril, and at the peril of this site.

To the OP, if you are indeed positive, I am sorry you have joined these forums under such duress. However, if you are positive, then you absolutely need to research the scientific portion of the LESSONS section and get yourself acquainted with an infectious disease specialist to determine your numbers and percentages and other information, and decide where to go from there.

If you are indeed positive, your life has changed. But it has not ended. I myself have been positive for over 15 years, near death more than once, and sported T cells ranging from ten to over five hundred. I have tried most of the drugs on the market and have found a combination which works well for me. And believe it or not, I have done HIV counseling on and off for over ten years.

This disease can indeed be survived. A newly diagnosed person can even thrive nowadays, perhaps never even getting an AIDS definition. But you have to be smart, you have to act relatively quickly to get and maintain decent medical help, and you have to know what this virus is, what it does, and how to prevent it from destroying your life.

Hugs will help you today. Scientific information will ensure you are alive and healthy tomorrow. You can ignore one or the other, but only both will give you everything you need.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline madbrain

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Re: What Went Wrong...doctors got no answer
« Reply #26 on: November 17, 2008, 04:36:28 PM »
jkinatl2,

First, I want to say that I wasn't specifically calling your previous responses out in this thread. They were much more reasonable in comparison to some of the others. You can read the thread back and figure it out.

And, please don't put words in my mouth. I'm not saying science should be ignored. I'm only saying that attack dogs should be. I'm totally in favor of scientific accuracy. And I wouldn't be posting on this site either if it didn't have such great scientific information posted. I would never suggest ignoring the LESSONS. We should always use and refer to the best available scientific information that we have at this point in time. We should also realize science is not static. I would be surprised, and disappointed, if the content of the LESSONS remains exactly the same 10 years from now because that would mean scientists wouldn't have learned anything new on those topics in that period of time, or they wouldn't have gotten incorporated into the site.

If the audience for this forum was scientists and researchers, then I think it would be the right place to call some of the reports we get that occasionally slightly conflict with currently prevailing scientific information into question, and subject these reports to a very high level of scrutiny. Certainly, it would be the scientist' job to evaluate claims that are made and find if there is something to them. I think they would do so much more tactfully and professionally than many of the forum members do. But even a scientist should keep an open mind. Science would never evolve if one only stuck to preconceived notions in absolute terms and just discarded every unusual observation. Just because we have some anecdotes that cannot be easily replicated in a lab doesn't mean that these reports are necessarily lies. There are so many other possibilities that need to be considered - that the reports are incomplete, some facts are omitted from the reports that we don't know are relevant, that there was human error during testing, or maybe, just maybe, scientists don't know all the facts there are to know yet.

I am not suggesting that the LESSONS should be rewritten every time there is a single report that contradicts them. Not unless a scientist investigates these specific claims in person with the patient, and concludes that there was merit to it, and preferably finds the explanation for it. In the meantime, unless or until that happens, we can only go by the best available information that we have.

Since this is a support forum, I don't see how it helps anyone in any way to jump the gun on the people making unusual reports. It certainly doesn't encourage people to come here for support. As one who has been attacked many times for some of the reports I have made, I can tell you I know how horrible it feels.

I'm glad science has helped you and I understand you owe your life to it. My bf probably does too. I don't question that. Just because science has not necessarily explained the OP's HIV infection, doesn't mean that he cannot benefit from the same scientific information about his treatment options.


Which is why me and many other LTS do not post here, nor in LIVING WITH, very much anymore. We are dogmatic because we also help out in the AM I INFECTED forum and we support this site ONLY because it adheres to scientific accuracy. To do otherwise is to set a dangerous precedent insofar as treatment information is concerned.

But that is of no consequence, sadly. As you have decided that I and others like myself are to be ignored. Feel free to ignore the LESSONS section as well, since that is in large part thanks to those who are "dogmatic."

It IS possible to support someone, yet not accept scientific fallacy as fact. I do not deny that it might be TRUTH, as the OP defines it. Hundreds, if not thousands of people log on unknown to scour this site for factual information -finding it, sadly, not on the LESSONS section but in the forums, where scientific accuracy is not always controlled. And there can be a real difference between the TRUTH as someone perceives it, and FACT, as science dictates.

How, exactly, would you propose to offer support for such a situation? Besides saying, simply, I am sorry you are positive, and that the particulars of your infection are immaterial to the facts as they now exist?

Or should we rewrite our LESSONS section each and every time a claim is made which contradicts them?

You tell me, madbrain, because I really do not know. I simply DO NOT KNOW how to give unqualified support to someone who appears to be in direct opposition to the scientific grounding upon which this site supposedly rests.

I defend the scientific evidence because it is on this, not support, to which I owe my life. Being nice and warm is wonderful, and there are people here who will do that. But should those of us who define ourselves through science and who have survived because of that science be ignored?

Ignore Tim and Peter and the others, then. Ann and Andy and Annie. Ignore the LESSONS, or pick and choose which "science"  you decide is fact, and which is not.

But do so at your own peril, and at the peril of this site.

Offline jkinatl2

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Re: What Went Wrong...doctors got no answer
« Reply #27 on: November 17, 2008, 07:53:15 PM »
Quote
"The key to your further sex life is always to use a condom for penetrative sex. This will confidently protect you from HIV. You do not need to worry about fingering or oral sex from a HIV perspective. I hope that helps. I would just enjoy it if I were you!"


The LESSONS have indeed changed greatly over the years. Mainly to incorporate newly discovered long term effects from the drugs like AZT and the like, but also to incorporate advancements in transmission and testing theory.

Knowing HOW the virus invades a cell is paramount to developing drugs that stop that process. And the same science that drives treatment advances grounds testing. To state that testing is somehow fundamentally flawed brings the same discussion to the treatments. It's not even a hop and a skip from there to denialism.

Since I have been here, the "window period" for HIV testing has dropped from six to three months. In some places, it is down to six weeks. Is anything, ELISA standalone tests (particularly the oral tests) give a disproportionate number of false POSITIVE results, which are, of course, caught by the followup Western Blot testing. This decision to err on the side of caution is understandable, from an epidemiology point of view. Better to have a handful of scared persons than a population assuming they are negative prematurely.

And you are correct, this site, at the very least, this particular forum, should eschew rigorous scientific protocol in favor of support. Which is why I think it should be hidden from guests non-positive persons, so that trawling it for information which often proves to be false can be minimized. However, I see no feasible way to do this. So the site as a whole often suffers when misinformation is not corrected.

True, I think some people could do it more gently. But, Madbrain, we have had more than our share of monsters here who are later discovered to be intent on advancing their own pathology at the expense of this site. I welcome you to read the AM I INFECTED forums from time to time.

But I am really not good at giving unqualified support when it costs scientific credibility, so as I stated before, that's why I rarely post here. I fear I may do more harm than good, by placing the needs of the many above the needs of the few in this instance.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline madbrain

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Re: What Went Wrong...doctors got no answer
« Reply #28 on: November 18, 2008, 08:17:19 PM »
Hi,

Knowing HOW the virus invades a cell is paramount to developing drugs that stop that process. And the same science that drives treatment advances grounds testing. To state that testing is somehow fundamentally flawed brings the same discussion to the treatments. It's not even a hop and a skip from there to denialism.

I'm not a denialist. I didn't state that the testing was necessarily flawed in general, I only said it was one possibility. I offered other theories that were much more likely than the test itself being flawed, such as human error. I could still come up with several more that don't conflict with the OP's report, and also don't conflict with what's generally accepted as science currently. Before calling the OP a liar, nobody asked him if he went to that Nevada clinic that was reusing syringes and got shut down as a result. Maybe he got HIV that way. Maybe there is still another clinic out there pinching pennies doing the same thing that hasn't been found out yet. Or maybe he was one of the unlucky recipients of an organ transplant from the donor that had HIV and hasn't tested. That was the news recently. Maybe it happened again. Yes, some of those things are rather unlikely, but still, they have happened before, so how do we know they can't happen again ? A scientist would ask and try to exclude all other possibilities of transmission, but some of those questions cannot necessarily be answered categorically. I really wish the OP the best of luck in finding out exactly what happened, but he needs to be prepared for the possibility that he won't find out, and understand that he needs to concentrate on his future more than on his past.

Quote
And you are correct, this site, at the very least, this particular forum, should eschew rigorous scientific protocol in favor of support. Which is why I think it should be hidden from guests non-positive persons, so that trawling it for information which often proves to be false can be minimized. However, I see no feasible way to do this. So the site as a whole often suffers when misinformation is not corrected.

I don't really see how you could continue to help people by closing down the site to the public at large. As it is, you cannot technically check that anyone is positive. There has to be some level of trust between the members if we are to help anyone.

Quote
True, I think some people could do it more gently. But, Madbrain, we have had more than our share of monsters here who are later discovered to be intent on advancing their own pathology at the expense of this site.

I am sorry that there are such people. I just don't think we should assume that some people are in that category without some strong evidence.

Quote
I welcome you to read the AM I INFECTED forums from time to time.

I no longer read that forum since I was banned from it by Ann. I don't see much point in reading it if I cannot respond and help.

Quote
But I am really not good at giving unqualified support when it costs scientific credibility, so as I stated before, that's why I rarely post here. I fear I may do more harm than good, by placing the needs of the many above the needs of the few in this instance.

Well, prevention efforts and helping individuals who are already infected is not exactly the same thing. It's not exactly the same information that needs to be shared with each group. I don't think that we need to compromise scientific credibility in either case.

And I'm sorry that you view the statement of a theory as a compromise in scientific credibility. I just don't believe that scientists have answered every question about HIV yet. To me, it would not be shocking if some parameters in HIV infection and testing have still evaded scientists, just like many aspects of the rate of HIV disease progression are still unknown.
I wouldn't be enrolled in a scientific observational study on HIV elite and viremic controllers if I didn't want to help scientists find out more about the later.
« Last Edit: November 18, 2008, 08:19:41 PM by madbrain »

Offline Ann

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Re: What Went Wrong...doctors got no answer
« Reply #29 on: November 19, 2008, 07:47:20 AM »
Madbrain, Jonathan, please STOP this hijack of Liverpool's thread. Enough is enough already.

I don't expect to see either one of you post in this thread again unless it is in response to a NEW post by Liverpool.

Thank you both for your cooperation.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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