I know but he doesn't

[helpme]

No my son has not been tested  he insists that if there was a problem the hospital would have informed him he feels that the system will do its part.  The sad addition to this is that he once I showed him the test results from the doctor he called the hospital and they told him it is not possible to make such a mistake.  He also has since informed me that he was having unprotected sex with his girlfriend and of the 13th she was late.  So he asked me to but a pregnacy test for him which she took yesterday(fri) she is.  Now there are two more innocent people involved in this.  I am not putting the blame on anyone else my son should have been more responsible but his life is in danger because a hospital is too proud to admit a mistake.  I called Quest labs and asked them how long do they keep samples of blood and they said for the western bloc they will keep it up to ten days that is just enough time for the two bloods to get intermingled somehow.  

My husband was asked to come in by his doctor so that he could explain treatment options with him as well as gave him a referral to a specialist.  My husband insisted that it is not him they would not listen.  I contacted an attorney who said to take a third test with a disinterested party not Quest or the hospital that gave the nonreactive results just as a precaution if the third test comes back nonreactive than my husbands name can be taken off the registry for hiv. because he says that can prevent him from getting jobs and/or insurance.
Must go now have a business trip will return on thur.

[Willy50]

Interesting..... I did not know that they had a registry that was accessible by insurance or employers.  Of course, in the U.S. the CDC tracks all positives.

I don't have much experience with this, but it seems to be a situation that demonstrates a variety of ways that a system can fail.  It seems as if the folks that did the testing have failed to find or notify the infected party, and simply respond that they can't make mistakes.  They are willing to end it there.  The person that we may infer is the infected party does not want to hear of the possibility that the system failed.  As you point out, there may be 2 more parties that  may suffer as a consequnce to this; his girl friend and (if the pregnancy goes full term) your unborn grandchild.

You may not have any power, authority or legal right, but you may have an ethical or moral obligation to push for testing.  You may have to explain to your son that he is going to be tested again and that you will pay for it.  It is a small price to pay for peace of mind.  He may resist doing this.  You may have to explain that there is enough evidence to suggest a failure to notify.  If he has it and remains undiagnosed he is endangering his girl friend and child.  Surely he cares enough about the two of them and your peace of mind to get this taken care of.  There may also be his own peace of mind that is at stake in spite of his resistance to being tested, also.

It would seem that if he were to turn up positive you might have a medical malpractice suit on your hands with possibly several effected (and infected) parties.  You MUST keep good records thru this all.  You will need all medical records, dates and names of people that you have spoken with.  I would also continue to speak with the same agent of county health for advice.  

If your son turns up negative you will want to test the girl friend.  Does she know about this yet?

best wishes,
Willy

[helpme]

I didn't know as well that insurance and employers have access to information like this however the attorney that I contacted said that his name being on the register could affect his future employment/insurance so I quess he would know.
No my son's girlfriend has no knowledge of this as he doesn't believe it.  My daughter has suggested that time is of the utmost importance that she knows and starts getting treatment for herself and baby.  I spoke briefly with the girlfriend this morning and she spoke about the normal morning sickness etc. it broke my heart that soon that problem will be nothing compared to what she is facing. However I am going to tell my son that there are many possible things that might happen if he should tell her so that he won't be surprised.  One that she might terminat the pregracy and have nothing else to do with him so that he can prepare himself for another disappointment.  If you may recall he suffers from deep depression because he feels life has delt him some pretty bad hands ( I know this one was his fault) but most times he  was just an innocent bystander that was at the wrong place at wrong time.
While I was out of town my son did call me and ask how long would it take to get a test back if he was to take it.  I know that he knows there is something seriously wrong with him do to the severe lack of energy as well as other ill-feelings that he is experiencing.  I came come to see that he has a bad case of pink-eye.  My daughter said that he slept one day from 6 at night until 8am the next morning so unlike him. I am taking my hiv test on friday morning because I also must take a fasting for another test and the doctor suggested that I do it at the same time so that I only have to be stuck once.

[helpme]

Its been another bad day. Son very depressed girlfriend very moody and agrumentive I tried to explain to him that sometimes this happens in pregnacy.  His car for some reason caught on fire under the hood so that caused another problem. In trying to console him I told him he needs to think positive that the car is material and his girlfriend will start to feeling better shortly.  Then he turned on me saying how can he think positive when I've put a cloud over him by showing him the test results that was given my husband.  He says that I want him to be sick thats why I'm pressuring him to go and get retested. I  have not pressured him at all I only mentioned it once.  However I suggested that he try to eat better and get more rest.  He mentioned to me how much weight he was losing and I only confimed it.  He says that he knows no one that has lived long with  hiv and he's not going to try to prolong the inevitable. Then in the next breath he says how do I think that the hospital mixed the tests up when he talked to someone who says that it is impossible to include his results in a test that was done on the 10th of august when his was done on the 30th of July.  I got the bill for the test in the mail today and the account number for both test are the same even though on the breakdown of the visits two different birthdates are shown as well as my husband uses his middle intial and its included on the aug 10th and the july 30th doesnt have the initial.  Its as if his whole ability to reason and all the trust that he once had in me is gone and I'm living with a complete stranger.  He says that if he has it he want to just die and he would have rather not known and that If I suspected that they had made a mistake I should have kept it to myself.  I am going to call the support line that my daughter's job has as I am in much need of it right now.  Goodnight thanks for replying before.

[Willy50]

I sounds as if you are really in a preasure cooker.  You need to keep in mind that you do not have complete proof that your son tested positive for HIV.  However, when you mention all his symptoms...... it would seem that he is displaying some of the symptoms.  Of course, the mind is a powerful thing.  It is not outside the realm of possibilty that some of this is simply due to stress.  In my mind....... the not knowing may be far worse than knowing.

If he were to get tested and tested positive.........
     He would have to get treatment and deal with the substantial shock.

If he were to get tested and tested negative........
     He would be removed from a substantial amount of preasure.  He could then look elsewhere for his fatique, weight loss etc.  He might also be more "present" during his girlfriends pregnancy.

If he were to not get tested but was positive........
     1)  He is allowing the virus to go untreated.  People that take care of themselves and treat their disease fare far better than those untreated.  As I have mentioned, there are people that have survived more than 20 years with the virus.  The future will bring yet more advances.
     2)  If his girl friend is not yet positive....... she very well could become so in the future if they continue sexual relations.  Does he not owe it to her to prove to himself that he is "clear"?  If he refuses to do so....... he should at least allow her to know what she is unknowingly participating in, that she is possibly being exposed to the chance of HIV.  
     3)  If the girlfriend is told, she may wish to terminate the pregancy.  I am not going to comment on the moral aspects of this, but for it to be done safely it would need to be done in the first trimester.  The more he waits, the worse this may be when revealed.
    4)  That he is also exposing his child to the possibility of HIV.  That child may or may not be born with the virus...... but your sons inaction could cause both parents to have it.  Does your son owe his child a simple blood test, or his childs mother?
    5)  Would he take this simple test to simply alleviate your worry so you can sleep at night?  

One would like to think that this is just a glitch....... and that a test can be given..... and passed...... and that at some point in the future you might even be able to laugh about what a crazy time it was.

This thing could also have a much different ending.  The upset that he has about his past, or his car may seem pale indeed compared to how one would feel about infecting loved ones with HIV.  I would think that the regret would be present every day of ones life.

My sense is that there appears to be enough called into question that the first test and results should be thrown out.  People make mistakes.  Tests are sometimes in error.  I hope that your son will stop the vacillation and denial and just get tested.  The sense of relief will be palpable when he tests negative.  It may very well be one of the happiest days of your or his life.  

If he were to test positive, he still has the chance to save his girlfriend and child from this virus.  He still has a chance to become a father that lives to see that same child grow up and marry.  He has a window of opportunity.  I hope that he uses it.

I hope that this helps.  They are just my own personal viewpoints on your situation.

Best,
willy

[help me]

I appreciate your opinoin it is well taken. Usually I can reason on things and am more organized.  However I quess this has thrown my thinking completely off. What you say is so so true.  With the day off from work this monday my daughter and I have decided to talk to him and I'm going to use your reply as a guide in talking with him my daughter had also e-mailed me twelve suggestions as to what he immediately needs to be doing for himself as well as the mother of his child.  On the top of the list was that he needs to PRAY something that had been not a part of his life but his life up to 3 years ago at which point not only was there an increase in terrible things happening to him but he started doing things that was totally out of character for him. HE has almost become someone I don't know.
You are right also in the fact that he owes it to not only me but his sister who has become a nervous wreck she has put her life completely on hold she was in the process of a job transfer which she says she cannot stand the thought of being in another state if her brother is going to need her here.
We have also convinced my husband that he should go and take another test just as the attorney suggested because he was saying that he doesn't have to convince anyone of anything because he knows that there was a mistake.  I am going this morning to take my test  so the results should be back by tuesday.

Thanks again I can start the day in a much better frame of mind

[help me]

wouldn't you know the lab was closed until tuesday well i will fast again monday night and try again on tuesday.

[Willy50]

I have a background with 12 step groups.  They say that for every person with alcoholism they end up affecting about 10 other people.  It could be family, friends, loved ones.  (one could say the same for drug users or other problems; eating disorders, compulsive gambling, etc)  You bring up a good point.  The sphere of people that are affected by his behavior are so much larger than those I write about.  One reason I became involved in a 12 step program (Al-Anon) was that it slowly dawned on me that not only was I affected....... but my children too.  If they are affected...... it would stand to reason that their kids would be too?

HIV is like that too....... what of your son's friends and family?  What of the girlfriends friends, family, and loved ones?  Who will be her advocate?  From what you have written, your son's life was changed by a series of events.  It may not have been "fair", but life often is not.  It would not surprise me if this situation, and how he treats it may have an even greater effect upon his life.  He has a chance to save some lives here.  He has a chance to do so before it may become too late.

When I mentioned the advocate for the girlfriend earlier........ whether your son weds her or not....... you are now "connected".  She is carrying your future grand child.  How is she going to relate to anyone in the family deferring telling her that she (and her unborn child) is possibly being exposed to HIV?  If you were her....... how would you wish to be treated?  I cannot impose upon you what you must do.  That is between you and your higher power.  I am merely speaking of things that cross my mind.  The difficult task of deciding what to do lies before you.  I think that you are acting responsibly in offering an example; by getting yourself and your hubby re-tested.

We act...... to break the cycle.  Think of what the world would be like for you today if the person that may have infected your son with HIV had gotten tested or had disclosed to him.  We would not be writing each other today.  Your families life might have a totally different script.  Prompt action by your son may yet still alter it.

My thoughts are with you and your family.  Good luck with the meeting.  I'm sorry that other people with HIV don't drop in to this thread and offer their advice and experience.

Best wishes,
Willy

[helpme]

 My Husband and I were tested no results yet.  However we did talk to my son and said that while we do not know what is wrong with him it appears that something is not right.  Such as extreme fatigue, weight loss and this along with unprotected sex could mean anything. We suggested that he just go to the doctor and get a thorough checkup for the sake of the mother and baby.  His explanation was that he just doesn't have an appetite anymore and he has trouble sleeping at night and when he comes in he's so exhausted from not sleeping that he just doesn't feel like doing anything. So he's in complete denial.

We're thinking that we may have to wait until our test results are back and let the attorney use the legal system to make them notify the correct party by going back and checking doctors orders and seeing where the mistake was made.

Needless to say I am a nervous wreck.  My daughter and brother has suggested that I might need to try to take better care of myself starting now because there seems to be a long road ahead or short depending on how advanced my son is but the road will be hard regardless.

My husband asked for a copy of the initial results and the nurse only gave him two pages of a six page document  so I am going to get him to insist that they give him the whole thing as it part of his medical record since they are insisting it is him  This whole thing has brought out a trait in me that I had long put to rest and that is rage.  

[Willy50]

I think your rage has it's place.  I also commend you for what seems to be a very well thought out and complete action.  For a person in some turmoil, you seem to be getting lots done.  You may feel rage, but your actions speak of control.  Good job.

I mentioned earlier about what may be a possible lawsuit.  I mean, just whose fault is it if your son paid to be tested, did not receive the proper test results, and infected his girl friend?  It would seem to me that the doctors office might be considered at least partially culpable, and therefore liable for the 1) failure to get treatment for your son and any consequences, 2) The infection of your grandchild and their mother as a consequence of that lack of proper notice.  Let's hope that none of this is really going to be the case.  It is very unnerving that the office is refusing to provide your hubby's records.  It seems like stonewalling.  It seems as if they are working to obfuscate instead of resolve the problem.  It also points out that if your son were to get tested....... you might not want to use the same doctors office.  The next thing ya know the records will turn up missing.  That thing has happened over at the HCV board.  You may have to resort to legal action.  As far as I know........ they are your husbands records.  He has the legal right to them.  BY the way....... in case it may seem just too paranoid that a doctor would refuse to hand over records........ I've experienced something very similar.  People will go a long ways to prevent losing their jobs, money, or credibility.  If they were trustworthy...... wouldn't your hubby have his complete records now?

I've got to agree...... you are under a bunch of stress.  You have to get a lot done and you have also accomplished a lot too.  You may have to be in this for the long haul, so you have to conserve yourself a bit, but time is also very important.  I hope that this all turns out to be an unforunate error and you can forget about it all.

Good luck on your test results and good for you for providing an example for your son.

Best,
Willy

[help me]

Got test results back for my husband and of course they were non-reactive.  Left a message on my doctor's line for test results suppose to return call within 48 hours however it is really not necessary because if he doesn't have it I know I don't.  Went back to first testing site to get complete 6 pages and they told me that there was only 2.  Next appointment is with my attorney. Son is still in denial to us but he does not fail to take any of the supplements and herbs that I give him.  Went on-line and found people who are using natural therapy such as St. Johns Wort, milk thistle , garlic, and the list goes on.  Spent over $300.  In addition to that Ensure and Boost also recieved information in mail on how to prevent continued weight loss which I am putting in practice.  Must go now

[Willy50]

I wish that I could tell you what to do.  In a way......  you've done almost all that you can do.  You've tested yourself and your husband.  You've notified the doctors office of the mistake and have attempted to get your husbands records.  You've notified the county health disease control specialist.  You have to ask yourself, at what point are you satisfied that you've done all that you can or should do.  There comes a point that you let go of the situation.  If your son is positive (or negative too, since that is still a possibility) and does not want to get retested....... that is his deal.  He will have to deal with those consequences of his actions or inactions.  You can't make him get tested or make him get treatment.  It seems to me that a simple action by him...... getting retested........ would take care of all the questions, put a number of people at rest, and prove or disprove that your son's girl friend (and your future grandchild) are being put at risk.

I cannot say what you must do, but the question that I would be facing would be whether I would tell her (or give your son a chance to tell her first).  That would be the thing that I would have wanted to do some time ago.  I don't think we have the right to expose people knowingly.  It's against the law, indecent, immoral; wrong.  In your son's case there is much evidence that points to him being positive for HIV.  

Myself, I would want to error on the side of safety.  If he is positive for HIV he is putting the girlfriend and child at risk, particularly if he is in denial that he has the virus.  I feel that she should have the right of knowledge that she is in danger.  Once she is infected there is no going back.  

You might ask your attorney what they think about this issue too.  I am only offering my opinion; not what you must do.  I'll offer my disclaimer again, I don't have HIV, I'm not an expert, and my opinion carries no more weight than anyone else's.  It's just what I would do or want for myself if I were in that situation.

I know that this is a terrible situation for you.  My heart goes out to you and your families situation and I hope that it resolves itself very very soon.

Best,
Willy

[help me]

As usual your opinion is very well appreciated and taken.  I feel you are right.  Much has happen since I wrote last.  First my computer is on the blink.  His girlfriend went to Las Vegas for a wedding two weeks ago today and had a miscarriage(?) maybe it was the airplane ride as she was experiencing some difficulty that she had not experienced in her previous pregnancy. I am suppose to talk to a group of attorneys at the Bar association on the 15th of October because the one I was talking to said that my husband case was not a misdiagnosis per se but was financial injury,emotional distress, and deviation from a standard of care and he referred me to them and they are try to find an attorney that specializes in that area.  I am going to bring up at that time the fact that there was a violation of my sons privacy because when I went back to get my husbands file there was a copy of my son's visit to the emergency room included in the paper that they gave me but they had my husbands name(Sr) written across the bottom in marker I quess they were trying to say that maybe my husband was actually the one that went to the doctor and maybe gave my son's birthdate(?) I don't know I am trying to figure it out.  I have since begged and pleaded with my son to go and get retested my daughter told me to tell him to sign so  that if he doiesn't want  to know the doctor could discuss it with me and at least I could know his viral load and try to treat him with herbs accordingly.  My son called the hospital again and  they once again said they do not make mistakes like that.  So if you don't want to believe you have a problem then there is the excuse. However it becomes clearer every day that his strength and enegy is waning.  He comes home from work and falls in the bed where before he could get by on 4 0r 5 hours he now sleeps sometimes 10 or more.  He has no appetite I have bought formulas to stimulate him but he takes a few bites and hes done.  or he will say he wants something really bad and then when I get it for him he says he can't eat it an goes to sleep.  He told me he can't understand why I've pulled this notion out of the air that he has hiv and i've ran with it and won't stop he says the people said the blood was drawn out of his fathers arm on the 10th of aug. so I need to confront him with the test results that I'm trying to strap him(my son) with.  
I feel that I've done everything I should do for my son not just in this instance but thru out his life I only have regrets about two things that I did but I guess all parents make mistakes.  

[Willy50]

It's surprising how long this can remain inconclusive, all the time your son seeming to get worse.

We still don't know if he is HIV positive or not.  If he were to be positive for HIV, we don't know if his girlfriend was also infected.  We do know that you are at an impasse of sorts.  The doctor/ clinic will not admit error.  Your son will not retest.  

You might consider that all your efforts have not been fruitful.  Stop trying to convince him of what he feels is you being obsessive.  Instead....... observe that he is sick.  He needs to go to the doctor for tests.  Have him go to a different doctor or clinic.......or even the same.  If he has HIV they should be able to detect it.  If there is a coverup or records glitch it may then be uncovered.  It is also entirely possible that it is not HIV.  He could have chronic fatigue, IBS, depression........any number of other problems that are not life threatening or communicable.  They can be detected and treated.  Get him to the doctor and ask that if they ask to retest for HIV, that he consent, or even ask for the test, just to humor you.  The main point is that he needs help and he is going to find out what it is.

The supplements that you are buying him......... it is a kind and admirable thing........trying to keep him going while this sorts itself out.  If he has HIV........ those may fall way short of what he needs.  If he has some other medical condition or food intolerance....... you may still be flying blind.  I would think though, that anything that will keep his weight up would be a good thing.  

I hope that broadening the scope of testing will help you get him to take some action.  So far as getting access to his medical records....... more power to you if he agrees.  However, I'm feeling him push your involvement away.  There comes a point where if a person is sick enough or refuses to get medical attention that it can be awarded.  I'm in no position to tell you if you are anywhere close to that.  Many "normal" people would bristle at the proposition  of having a parent signed on as also having access.  If he refuses further testing to get to the root of whatever medical issue he has, (be it mental or physical) you may be one step closer to that type of action.

Best wishes,
Willy

[help me]

It is possible that he may have chronic fatique I don't know if it is heriditary but I do have it as well as fibromalgia however I can't figure how were the hiv positive came from in my husband's medical records.  I prefer to believe and hope that it is something other than hiv.  On Wed. he indicated that he might be coming closer to believing the worse because he made the statement that all his goals and dreams will never be realized.  He said that no one will ever marry him or he'll never be able to have children like his father did.  He says that he has nightmares where he sees him self in the ground with grass growing over the top of him. He mentioned his blood being messed up yet he expressed no desire to try to get tested to find out what the problem is.  I am trying not to pressure him or push him to fast because of his severe depression but I hope to steer him in that direction hopefully before its too late. Maybe I am just a stubborn mother but  I can't let go as long as there is a drop of life in him.  Maybe I'm being unreasonable in my hopes but thats all I have at this time is hope.  Thanks  for being there.