I know but he doesn't

[helpme]

Recently my husband who is Sr. went to the doctor to get blood work done for a medical procedure. About to weeks earlier my son (Jr) went  to same doctor for what  seemed like flu.  Apparently results of my sons blood work was entered in my husbands chart.  He's since been retested and its not him with hiv.  My son has been showing the signs of the disease ( wasting in the face and temples as well extreme depression) for about four months now and I had previously mentioned it to him and he denied it.  I know that he truly does not know he told me that someone had burned him about a six months ago and was treated for clap but I think he thinks that all is well not that he has taken the medication.  Should I mention what I think to him?  

[Willy50]

Hi:  I'm Willy.   Speaking of not sleeping......... I simply couldn't tonight.  It's 2 in the morning and I thought I'd check things out here on the board.

I'm sorry that I missed your post and left it unanswered.  I can tell you that this board is often very quiet and so you may not get immediate responses.  I don't have HIV, (I do have HCV) but I'd be willing to give you my opinion on the subject.

My guess is that the doctor told your son once the records got staightened out.  If this is not the case...... then I would think that you have the reponsibility to make it clear to the DR that you know of the diagnosis, and that you want to know that your son has been made aware of the diagnosis.  It may seem odd to think that that has not already been taken care of...... but in my case, the doctor failed to notify me that I tested positive for antibodies for hepatitis C.  It can happen.

My own opinion is that once everybody can talk about this they will be better off.  Just as you can't sleep....... I would imagine your son is going thru the same feelings.  Just as you need someone to talk to......your son need someone he can speak with about this.  I would make sure that he has the diagnosis from the doctors office.  If he is positive for HIV and is not using protection he could infect another.   Cuirrent treatment of HIV can arrest the progression of the disease for decades.  There are people around that have been positive for 20 plus years and have not progressed to AIDS.  One has to confront the fact that it happened, that it's real, and than you can take actions which will fight the disease.  It can be done.  People are doing it every day.  I feel that once you can get this subject out on the table it will be a tremendous start towards feeling better.  Those of us that have gotten the dismal notice that we have hep C go thru very similar depression, anxiety, fear, lack of sleep...... it is a very terrible time.  As time passes, as we are able to find out that having that positive diagnosis is not the end of the world.  We very often recover from the news, if not the disease.  I would want you to know that this will be a tough thing to deal with, but that it can and will get better than what you are going through now.  I am not trying to minimise the disease......... but the period of diagnosis is just a very, very difficult time.

I also recommend visiting a few other boards.  Four that I really like are;

www.PositivelyPositive.ca

http://www.pozcanadian.com/index.php

http://www.thebody.com/index.shtml

http://www.aidsmeds.com/

 I think we've got links to all of them here and I'll try to post them here.  And here is a page of links too;

http://www.hivanonymous.com/cgi-bin/yabb/YaBB.pl?board=alternative;action=display;num=1032181671

Best wishes, (and I hope this helps)
Willy

[help me]

Thank you so much willy for responding.  I know that my son has not been notified because the doctor or hospital will not acknowledge the error.  they say it is impossible for my sons information to have been entered under my husband because they go not by name but by birth date. I belief however, that once they saw the name they did't bother to check the birth date.  We have decided that we will tell him  on Thursday as today he has asked me to fix him a special dinner as he is having his girfriend over they are both off from work on Wed.  Not to go into a long spill but so many terrible things have happened to my son in his life ( friends that proofed not to care for him as much as he  did about them just as series of tragic things) I feel that led to his severe bouts  of depression and the smoking of marijuana since the age of 16 made him just not care about himself.  I tell him daily that he is the most special person in my world but he says I am the only one that truly cares about him.  I believe his father loves hiim but has difficulty expressing it because he disapproves of the smoking and my sons attitude about life due to the depression.  He (my son)refuses to get consuling because he says Why should he take medication when he hurts no one every one hurts him let them get medicated so they will know how to treat people.  I've rattled enough but thank you for responding.  I do appreciate it and feel somewhat better

[Willy50]

I'd like to point out one other thing.  I can't possibly know the answer, but is there a possibility that your husband recieved a third paries results and that neither your son nor your husband is infected?  I don't want to raise your hopes, but I can't quite understand that they can admit that the report for your husband is in error and still maintain that they can't make mistakes.  IF the results are not for your husband........ then who are they for?  If they are for your son and he is having unprotected sex with his girlfriend and he is positive for HIV, every day is crucial.  If he is going untreated due to lack of medical diagnosis, that is also possibly of medical consequence to him too.  For me....... I would want to talk to the doctors office again...... and perhaps a different person.  You are justified in being concerned.  You just have to remember that you still don't know either party is infected.  I think the best case scenario would be if the diagnosis is correct for the doctors office to straighten it out with your son..  I also would consider having another dr's office recheck the test.

Finally..... wonder how that will go over at dinner?  Both parties may feel like a bomb has been dropped on them and will be unable to check with the doctors office till the next day.  In my case I recieved a phone call from the CDC asking me about my HCV infection.  Believe me........ I couldn't WAIT to get back to the doctor that failed to notify me.  All I can say...... is that it's possible there is a mistake, but I would do your part to make sure that you are not part of the failed communication.  Once your son has the notice that a person of his name tested positive for a test he was likely given at the same office and during the same time...... they will have to talk with him and straighten it out.  That means possibly a reconfirming test.  I might also consider talking to either the county health board about this, since they also get copies of such results, or the testing lab that did the work.   Also keep in mind that labs can make mistakes too.  Don't start worrying until you have a solid confirmation.  that may require an additional test.  Keep in mind that usually they test for antibodies first and a back up confimation test which checks for the actual presence of virus in the blood; not just for antibodies.  The antibody test (often called an elisa test)is also not 100% reliable.  

Keep moving forward but realize you still truely don't know anything yet.

Best wishes,
Willy

[help me]

Dear Willy

No I wasn't going to tell him at dinner I wanted him to have as good as day today as possible.  I was going to tell him tomorrow morning for one reason the doctor is not in this Wed. so I was going to suggest that he stop at his office on Thur. morning to get retested. I'm trying to be positive about it until I know for sure but this has been a miserable week for me.  Thanks for your advice and I plan to follow it to the letter.  But can I check with the board of health or does he have to do the privacy act?

[Willy50]

It's possible that the doctors office "dropped the ball" and no one wants to fess up.  If you called them and told them the story (many offices have an disease control specialist) and recounted the story and mention that there is a strong possibility that either your husband or son tested positive for the elisa antibodies test (this is what I assume he "failed", tested positive, or "reactive" for (all being the same thing)).  One way of doing this would be to not mention either your name or the doctors office.

You are absolutely correct that all parties MUST observe the patients privacy and could get in more trouble for crossing lines there than in carelessness or a clerical error.  You may be able to find out more if no parties names are mentioned.  I would probably reserve this if you can't seem to get clarity on what happened.  If there is any question about the results it may be necessary to get your son retested.  

It is also rather true for the testing lab.  They may not be willing to share information to you but may to the son.  When I failed my antibody test I had several vials of blood drawn.  Because my viral load test was going to cost over 300 dollars I instructed the lab to hold until I was confirmed positive for HCV.  When I called to ask about the results, they only could tell me that the doctor was the one that could tell me the results.  Coyly, I asked if they sent in the other test for evaluation.  They told me yes.  They could not give me the results, but when they told me they sent in that second blood vial for viral load the message was clear; I was positive.  LOL....... I would wait 2 more weeks before I was informed "officially" (from the doctor) of my positive status for HCV.

Doctors.  

Another possiblity is that your son knows, but doesn't care to share that information with you.  I would agree with Laura in your other post....... tread lightly and respect his privacy.  You need to go only so far with this and then let the other parties deal with this.  

I'm glad that you are there for your son, it sounds as if he has really needed you.  As a 12 step anonymous program we often have to try to understand (either ourselves or others) use of drugs.  It has sometimes become a contentious subject on our other board (the HCV board) and I have come to the conclusion that many people turn to (in this case marijuana) drugs as a way of medicating themselves, much in a way that some doctors might prescribe something for the ailment.  I'm not for the use of marijuana, but I recognise that many with the side effects of HCV may rely on it.  It may have an even stronger "medicinal" use with HIV.  I'll see if I can post a thread from our other forum.  It has helped me get a more well rounded viewpoint about the subject.  Perhaps it may shed some light on why it "works" for your son.  There is at least one post that really explained it for me in their use of it for pain and depression.

http://www.hcvanonymous.com/cgi-bin/yabb/YaBB.pl?board=Politics;action=display;num=1058996466

Best wishes,
Willy

[help me]

It is really theraputic to talk to someone. I slept for 5 hours last night the most since saturday. After the rest  I am able to think a little more clearly.

My sons girlfriend did't come last night her great grandmother died so my son we to console her.

We've decided to talk to him tonight.  I called the Disease  control specialist in my area.  She was very helpful she said that ususally they try to go to every measure possible to notify the patient even going to their home.  However my sons case is different in that he went to a facilty conected to the hospital that is an alternative to going to an emergency room . After being treated at the facilty my son was advised to see his primary care doctor in 3 days which he didn't.  She said that since the test results from those facilities are usuallly loaded into a database that allows doctors associated with those faciitlies to retrieve the information once the patient requests it and since my son never went to the doctor to follow-up he doesn't know.  
We are planning to talk to him tonight after work and ask him if he followed thru.  He is very open with me and I believe if he knows anything he'll tell me after all he did ask me to take him to the doctor when he was in pain from the gonorreah. I know this is not the time he has decided to be open with me.

[help me]

I explained to my son tonight the whole story as I previously told to you and suggested that he go and get retested.  His response has left me more devasted than the thought that he might have the disease.  He says that I have made it up he says that he has been to the doctor several times in the last six months and has taken bloodtest and urinanaysis and no one has said anything to him.  I tried to explain that one the first occasion he was having pain in the lower left side and his doctor thought it might be a hernia from weight lifting and was ruling out any type of bladder infection (0r so he says)  I get the lab bills and this is the test that was taken.  The second time he was doubled over with pain behind his navel and we went to the emergency room because he was screaming in pain that time they did a cbc four panel(?) a test for barbiuates and two more tests that I can't recall right now but they had nothing to do with blood work.  He seems to think that they should have found something if there was anything with those test.  I tried to explain that the test that he took on July 30th was specifically for Hiv.  
He accused me of being distant with him even before the jullly 30th test and that I am trying to make him have something he has a terrible cough (he's always had asthma)  I merely said that cough sound bad , and it does, maybe you should get it checked out. He becamed enraged when his father told him we were only trying to look out for his well being.  I aplogized and told him that if it bothered him for me to be concerned about him I would pray to God to help me not to concern myself in any area that makes him uncomfortable.
I had told his older sister that I was going to talk to him so she spent the night in a hotel because she said that she would not be able to stand to hear him crying in pain of what might be wrong with him.  She confided in me that she knows that he uses protection with his girfriend which I always suspected as she has a child by a previous relationship.  She says that he is afraid that if he finds out for sure that he has something he would have to tell his girlfriend that he has been cheating on her. So he would rather not know and risk getting help while there is a possiblity.  We even told him about a natural healing facility that you can go any stay for weeks at a time.  We suggested that he go for a week at out expense just to rest and helpl build himself up because of the recent trips to the hospital, outside of the asthma he has never been sick. He refused. After many minutes of accusing me of always hoping for the best for his sisters and always lokking for the worst for him.  He left.  Talked to his father and asked him why do we worry about him so much and his father told him that whether he is 23,40, 50 or 60 he will always be our child and we are only doing what parents do.  What I don't understand is how could something so innocent turn into something like this.  My daughter says he's probably just afraid and knows that his girlfriend will be gone and he travels in a very small circle and they may be gone as well.

As I said before he is my only son and I really want him to find out now while there is hope.  I know that hiv is not a death sentence as it once was but I also know that it can progress to a point that nothing can help you. Believe me I am not a meddling mother this was thrown in my lap and any other area of his life I know about he tells me openly.  Please advise should I leave it alone as I promised him I would?

[Willy50]

I'm really glad to hear that you got some sleep.  If you don't sleep, you'll be of no use to anybody.  I remember being diagnosed....... truely a terrible time.  I was very fortunate to have people that would take the time to talk, explain, mirror feelings, or show me that they were doing alright and that the earth wasn't just going to open up and swallow me.  Yeah, these boards can really help.  Laura is one of my closest friends from the HCV board.

I'm also happy to hear that you called and got some information and explanation from the disease control specialist.  I just couldn't quite figure out how this "fell thru the cracks".  I think it also points out that the system isn't perfect.  The CDC makes calls to people that tested positive for antibodies to check up on them.  In my case, it was an 8 month delay from when I was tested before I was notified.  NOT very good, particularly with a disease like HIV than can be sexually transmitted, or that early treatment can make big differences in halting disease progression.

I hope this turns out as well as can be expected.  It's great that your son can confide in you that way.  Many kids do not have that kind of relationship with their parents.  It speaks well of both you and your son.

Best wishes, thanks for keeping us appraised of whats going on.  Keep trying to sleep and maintain a positive attitude..

Willy

[helpme]

The disease control specialist called me back to get the specifics dates of visits by husband and son and their primary care physians names.  She was much more convinced today that a serious problem had occured at some point.  She even admitted that there was only one patients name shown in their file but said she couldn't tell me which one she saw I told her in the beginning I was not trying to obtain information but to give information so that a wrong could be corrected.  At this point I resolved to leave it alone even though she says that she is going to call back (for what if she can't tell me anything?) I did a lot of soul searching and I feel so many emotions right now. One thing is I can't make my son love himself enough to follow thru and I will not be made to feel quilty because I love him and trying to save his life.

[Willy50]

Well, you won't have many weeks like this one, I hope.  It's not unusual to lose all kinds of sleep, feel all kinds of emotions, and of course, feel confused or angry about the rather strange way this all happened.  Our health system is supposed to work better (and quicker too).  On top of the tragedy, is the sense of happiness that your hubby is clear, and the dawning sense that his fortune means a big problem for another loved one.  Who wouldn't be feeling all sorts of things.  I went thru something similar when I was diagnosed with HCV.  I went from my own shock and depression, which really blossumed when I began to wonder if my kids were infected.  I really don't know how well I would have handled it if I had the burden of blaming myself for infecting my kids.  Fortunately, my three kids tested negative for HCV.

You can't help caring.  I feel that you had a responsibility to help get this cleared up.  Sure........ if you had done nothing the CDC would have called him up sooner or later.  By then the disease could have been inadvertently passed on again.  That would be very difficult, knowing that it might have been prevented.  So I'll repeat, I think you did the right thing to intercede.  Once both your son and the doctors get it straight, (remember, we still don't know if he has tested positive for the antibodies, or for the actual virus in hs bloodstream, or if they got a third party mixed into this mess) your actual "job" may have ended.  How your son wants to deal with it is his deal; he may wish for the help, he may go thru a period of denial, or other ways of dealing with this.

I would simply be there for him, understand that he may need time to sort it all out, and be the mom you already know how to be.  I have friends on the other board that didn't immediately get diagnosed and start treatment, yet after a time, they came around to the decision, started and finished treatment successfully.  He may need some time, but he may also have some time.  I know that it will be a tough period for you too......

I highly suggest his reading from a few boards.  There are a few good ones that I listed.  I also like the blogs.  There are some GREAT writers at AIDSMEDS, and I'm sure elsewhere too.  I think that a bulletin board (if only for reading) will help your son.

By the way......... After posting for yopu to contact the county disease specialist. I started having doubts about wheter I should have.  I'm glad at it is working out.

The major issues that I think he may have;
1) Finding out his status; does he have HIV or not?
2) are there others which may choose to to be tested also?
3)  researching the topic of treatment, starting to investigate diet, supplements......
4)  Finding a doctor.  Maybe it should be the first thing on the list....... but I also think it's important to know a little something about the disease before you hire
someone.  

Good luck as you go thru this.

Best Wishes,
Willy

[helpme]

I am so glad that none of your family was infected that must be somewhat of a relief.  Its our makeup as parents to protect our children even if it means we hurt.
Thought about contacting the cdc as well because I'm sure that probably will start wheels in motion that I might not want to deal with.  She did call back and said  a lot but wa really saying nothing!  It was obvious that in all the talking that I did to her she still did not get the story right and suggested that I get tested as well
I talked to a mental heath doctor provided by my daughters employee for family members.  She suggested consuling  for my husband, son, and myself.
She also said to follow my gut feelings in dealing with it because if I say nothing that my son who is already feeling that no one else cares about hiim he may start to feel that the one he has always been assured of  has abandoned him too.  So I asked him last night had I ever asked him to do anything that would harm him and he said no.  So I asked him why after 23 years would I tell him something now.  He asked me if I thought he had hiv and I told him I thought he should make sure that he didn't and if he needed us to go with him for support we would.  So he says that he will go on next Wed.  I am going to take him to a free clinic not to far from my home so that we won't be feed into the same database as the hospital hopefully limiting the chance of  a mixup.
Thank you for responding.  I have never went on a message board.  I see my daughter doing it ever day. I'm glad that I did although it took be a while to get the hang of it.  My first message that I had wrote was erased after I spent about 20 min. writing because I forgot to put in my email address. I won't do that again .

Excuse me for my lack of knowledge whats the difference in having antibodies or having the actual virus in the blood?  I thought I knew a lot about hiv and hcv but I guess that I don't.

[Willy50]

I'm less "up" on information about HIV than HCV...... but the way it works are the tests that conclusively prove that a person has HIV, or hepatitis A, B, or C (and some  other diseases) are expensive.  On the other hand, there are tests that can detect somewhat specific antibodies which are relatively cheap, quick, but are only somewhat accurate.  Here are a few links which will explain;

http://www.aids.org/factSheets/102-HIV-Testing.html

http://www.avert.org/testing.htm

I also understand what is like to possibly take this as "a sign" that this is they way that his life will be, or that God or karma is "punishing" us.  I had a period of time that I had a divorce, which was very terrible, a death of a parent, and loss of a long term job in a very short period of time.  I didn't think it could get much worse........ until my house was destroyed by fire.  Somehow....... I dug in and made it thru those experiences, only to get the phone call from the CDC informing me that I tested positive for Hep C.  What we learn is that we don't have to let these events destroy our lives.  They do end up shaping them though....... and even in some ways they can even bring positive things into our lives.  For instance, at the other site we meet people that the disease compels to stop drinking.  They might not have ever been able to do so if not for getting the HCV diagnosis.  They quit drinking, start taking better care of themselves and other things start to improve in their lives.  No matter what the diseases may bring, they also bring a new found sense of appreciation of life.  It may be in our health, in just appreciating a good day, a loved one or friend in our life, meeting strangers on the internet, or learning  how to post on a message board.    

That is a double edged sword for me....... even though I've been doing this for a while, I still end up losing a post from time to time....... oh, I hate that!    The worst was on a board that logs you off automatically after an hour.  Think about writing a long post only to find out that you had been logged off 5 minutes before you post.  Aarghhhhh!  Some of us end up writing our posts on an e-mail form or in "word".  That way we have a copy and can even spell check it before before posting it.  We then just copy and paste it onto the "post repy" window of the forum.  Also, if you hit "preview" in that same window, you should have a copy of the post in your browser.  

I hope this makes sense.

Willy

[helpme]

I've  spent the last two days trying to help my son with his diet and looking up nutritional supplements  because he seems to be losing weight every day so somthing is going on I just don't know for sure what.  He's promised to try to get a little more rest as well, as he had been only averaging maybe 4  hours a night.

I told my daughter that the doctor suggested that I get tested as well and that I was upset that he didn't listen.   She says that he was doing his job because so many people lie and he can't be sure and he only suggested for my own good.  She said the doctor has no way of  knowing that I went with my husband to pick up the results I could just be going on hearsay. I now understand why he insisted  and I will get one on my next appointment in 2 weeks.

I have visited a few other boards as you suggested and it has helped my calm down some.  I'm still having a few anxious moments thruout the day especally sunday when a friend called to tell me that her son had just had his first baby.  It took me a little while to compose my self and realize that I will be happy just to have my son.

[Willy50]

I don't know if your son has yet been contacted, or if he has taken another test for HIV, but if you were to assume that be was positive for HIV there would be several steps that he should take.

You could help him find a good doctor or clinic for treatment.  All doctors are not created equal.  Statistics show that doctors with greater experience with HIV/AIDS can make a large difference in adding quality and years to a patients life.

From what you've written, it seems as if he may also be suffering from some symptoms of HIV.  He also needs to keep his weight up.  If he is having digestive issues(retaining food or fluids) he needs to get those resolved also.  

I know that this may seem difficult, but you both also need to keep a positive attitude about this.  Lack of sleep, fear, and a feeling of doom can also contribute to decline in health.  If the virus is caught early and treated one can stay in relatively good health for years.  As I mentioned, there are many people that have had this disease for 20 plus years, and the treatments and understanding of the virus continue to improve.

I hope this and the other sites have helped.

best,
Willy