Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Transmission and Education >> Am I Infected?

Pages: 1
KitG
Expert

Reged: 01/15/01
Posts: 103
For VonDutcheFace and others
      #183993 - 04/03/06 09:34 AM

Hi VonDutcheFace

I was reading a few of your posts and I identified strongly with your list of symptoms, so I thought Iíd share some of my experiences of recovery

Like you, I tested for HIV, then when I kept testing negative and the symptoms remained/got worse, I thought it must be either an undetectable strain or some new virus. I couldnít tolerate the idea of people suggesting it was stress/anxiety, because what I was going through was nothing like anything I could read about stress. Also, like you, people around me were showing similar symptoms. Also, I found out the other person had been admitted more than once to an infectious disease ward with meningitis, pneumonia and other stuff besides.

Anyway, I spent a long time looking into the undetectable strain/new virus theory and I got absolutely nowhere. I saw doctors, infectious disease specialists, psychiatrists, counsellors and therapists and none of them were any help whatsoever

At some point, I came to realise that no amount of medical advice, psychiatric help or internet surfing was likely to help me find out whether I had an undetectable strain or new virus. Looking back, this was the first step I took to my eventual recovery.

Next, I accepted that there were countless people like me, with all the symptoms and the same questions, worries, doubts and fears, who had ultimately recovered.

Also, while I didnít accept that stress and anxiety were the sole cause, I did accept that all the worries and fears were helping to maintain the symptoms and possible make them worse. So I had to start to let them go.

Finally, I realised I was always looking for reasons why I was different. I realised that this really wasn't a very helpful way to be.

Those were some of the things I did. There may have been more but weíre talking over five years ago, so itís hard to be precise.

None of this was easy. And nothing happened overnight. Many of my symptoms stayed around for months. One thing Iíve learnt is that the longer people suffer with these symptoms, the longer they can take to ease. But they can ease and people can recover.

So what happened to cause my illness? Iíve come up with all sorts of theories, but ultimately Iíll never know for sure and frankly I donít care. Medical science didnít, and never will have all the answers. But then neither will I. But none of the symptoms meant that I had an unknown or undetectable virus and none of them have stopped me from recovering

People have asked me elsewhere if Iím 100% back to how I was before. The answer is no. This is truly a life-changing experience and you can come out of it a far, far better person than before. Actually, I think people HAVE to change, or be WILLING to change, in order to even BEGIN to recover from all this. That is my opinion anyway, based on my own experience. I wouldnít want to be how I was before. No thanks.

Iíve always wished there was a web site containing the stories of the many people whoíve taken a long time (more than six months) to begin to recover from this, but trust me there are many. I really canít see any reason why your story has to turn out different to mine or those countless other people who have been here or on other boards over the years.

Finally, I saw that youíve read one or two of my old posts. I hope you find the one below interesting. It's from May 2002 and I'm posting it because, for some reason, it never comes up under the list of my previous posts (not on my computer anyway!

Wishing you all the best
KitG






HIV neg at 6 months. LOADS OF SYMPTOMS !
05/31/02 07:26 AM

Apologies for the sensationalist title but I though it would grab the attention of people who might find this useful eg. Chris, uhohblita. It's also the title of my first ever post here:

__________________________


HIV neg at 6 months. LOADS OF SYMPTOMS !
Posted by KitG ( )
Posted on 1/15/01 08:19 AM


"Great to find this site. I want to know: Is there anyone on this forum who is going through the same thing as me, with a six months negative antibody test and a whole load of symptoms? Hereís the story:

Following a one-off unsafe sex encounter in July 2000, I came down with what seemed like ARS a few weeks later: fever, rash, sweating, anorexia, diarrhoea, you name it! I know a lot of these symptoms can be stress-related but obviously I was concerned about HIV, so I went for an antibody test, which was negative.

The symptoms subsided, but I was then left with a constant swollen, burning feeling in neck, armpits and groin which lasted about eight weeks. I still tested negative and my glands were checked out by docs who said they werenít swollen.

After a three month negative test they said ďno more testingĒ and advised me to see the mental health professionals, because they thought I had OCD, depression, anxiety and phobia! I didnít agree with the diagnoses because the only reason I kept going back to test was the pain throughout my lymph node system. I was keen to keep an open mind though, so I went along with them and Iíve now been in therapy and on meds for three months.

So Iím calm now, in control of myself and not stressed out all the time or anything like that. The problem is though that some symptoms are ongoing. In particular, my glands still feel uncomfortable all the time, I have chronic loose stools/diarrhoea, I have an ongoing minor yeast infection in my mouth and I feel generally tired, fatigued and malaise virtually all the time.

I have had tests to rule out virtually everything, and all these tests have come back normal.

Eventually, I decided to track down the other person from the encounter. When I eventually did so, it turns out sheís been in hospital three or four times since our encounter, with meningitis, pneumonia, and something else. Sheís also tested negative for HIV.

So itís obvious somethingís going on here. What it is I donít know. As you can expect, Iíve had to research a lot myself and to me the only thing that it seems it could be is HIV, either a new strain or delayed seroconversion. Itís NOT stress or mental illness and I donít believe thereís some new and unidentified virus or disease out there, because I think we would have heard of it before.

Is there anyone else going through this specific situation? Iím not talking about worried well, but about people who have genuinely had unexplained problems similar to these, which seem HIV related but antibody tests are constantly negative. I sure could do with some support here, because before long I genuinely will go mad!

I donít want to freak anyone out. The vast majority of people should be happy with their three month negative as long as they have no symptoms, or if their symptoms can be explained away by stress or cold/flu etc. I know I would have been".

__________________________


First thing to say is look at the similarities, the repeated thought and ideas. I wasn't the first and time has shown I was by no means the last.

negative tests
load of symptoms
rejection of existence/significance of stress/mental health
disagreeing with diagnoses
self diagnosis
compulsive researching
theorising about undetected strains, or unidentified viruses or diseases
rejection of worried well label
reaching out to others in similar situation
anger/lack of faith in medical profession

The point I'm making is that there have certainly been lots of people here and elsewhere who have gone through these sorts of experience. But the one thing to remember is that NOT ONE of these people has ever been shown to eventually test positive for HIV. Nor have they been shown to have some unidentified disease.

Logic is not the easiest thing to achieve when you're feeling ill, emotional, in pain and frightened, but logic is the best way to understand this. If you search through this Board since it started in 2000, or through The Body's expert forums for a few years longer, and you'll find the same people with the same theory. And now, years down the line, where's the evidence for that theory? Simple answer: there is none.

Because the important thing is there would be evidence, plenty of it. Think about it. A lot of these people have relatively low risk encounters, which would suggest a fairly easily transmissable disease. So there would have been hundreds, thousands of people coming down with it. And this in a world which is still fresh from the horrors of the emergence of the AIDS epidemic and which would be keen to overcome all the mistakes associated with those early years (read Randy Shilts book-but only when you've got over your HIV anxiety!)

So if there was a new virus and one which is causing the health problems which people are claiming, then we would know about it.

Of course one alternative theory is that people are getting ill and it's going unrecognised due to uninterested doctors. This idea is best answered in one of Joel Gallant's answers

Undiscovered Viruses and Disease
By Joel E. Gallant, M.D., M.P.H. (14-Nov-1999)

Question

Hi doc,

After I had protected sex with a prostitute I developed a floater (within a month), I had a rash and sore throat too. I tested negative around 22 weeks after this. So I'm sure I dont have HIV. Since my test I've been very careful, I only have protected sex, and I only recieved oral sex once without protection.

Now, since this isn't HIV I'm thinking there are STD viruses that are not discovered and I have one of them. How do you find out if you have a yet to be discovered disease?

I asked my Doc for a refferal to an infectious disease specialist he refused. I called several infectous disease specialists in NYC/Philly and Princeton. None of them show any interest in studying me. So if they ignore cases like mine, how are they ever suppossed to find new viruses?

I'll bet there are new viruses RIGHT NOW brewing in people and I think the CDC or someone should be on the lookout for them.

Knowledge and action are the best lines of defense against our biological enemies.

Any thoughts?


Answer

Thanks for the warning. I'll call the CDC right away and tell them to be on the lookout for new viruses. It probably hadn't occurred to them."


More evidence against this idea can be found in people like me and others who come back here now and again, living proof that our earlier theories and ideas were wrong. It's a shame more people don't come back, but that's the nature of it, you learn and move on, besides some people might not want reminding of a frightening, embarrassing time in their lives. But believe me when you're here long enough you recognise people, even Anonymous, and you realise they still come back from time to time and haven't fallen ill after all.

I can feel uhohblita and Chris and others' sense of anger and despair because I went through a similar experience. But I really don't believe that a lot of their darkest fears are going to proved correct. Again, I base this view on experiences of myself and others, and as a result of far too much reading and researching!

At the risk of seeming "self-absorbed"(!) it might be worth repeating my sort-of-theory about all this, which I posted the other day:

1. The stress, anxiety, worry about HIV is prolonged over a long period of time, three months, six months, whatever. There is seemingly no escape from it, no fight or flight reaction is open to you and no time off for your mind or body. So you reach exhaustion and all the symptoms that go with it.

2. The stress and worry are not about things happening outside (i.e work, family, relationships, the unsafe world). They're about what's happening in YOU ie. your own body. So your whole attention and stress reaction is turned in on yourself and you become hyper-aware of your bodily feelings and sensations, and things you may not otherwise notice suddenly become real, uncomfortable painful symptoms.

3. The symptoms increase the stress and so increase your preoccupation and worry about your body and what you think is wrong with you. This in turn increases the range and severity of symptoms you experience and the vicious circle (or more accurately downward spiral!) is complete. This in my opinion anyway is why it's so hard to break free and why there's people like us who find it so hard to accept negative results.

4. Also by this time you're probably feeling worse physically than you can ever remember so you think the cause must be physical and serious. And the doctor's there saying your results are conclusive but they say there's nothing wrong with you or they can't tell you what you do have, other than stress. So you see people here writing "It can't just be stress, I've had that before and it's nothing like this". But in fact the stress reaction people experience changes from person to person and from event to event. And it's not and doesn't mean it's "all in the mind" because the mind and the body are intricately linked. Western medicine does a lot of things brilliantly but one thing maybe it does wrong is to split the body from the mind and imply it's either physical (in which case the physician will sort you out) or it's mental (in which case the psychiatrist will do it). Whereas in fact virtually every physical problem has a psychological effect and virtually every psychological problem has a physical effect.

As I said then, it's easy for me to say all this, and if I was reading all this now in the grip of fear, then I would probably pick it all to shreds and find differences which would confirm why this didn't apply to me. But I think there are far more similarities than differences in all these stories over all these years, and from where I am, I think that should be some comfort to people.

It won't take the symptoms away overnight, this week or this month, but it's the start on the road to getting your life back.

Again, call it experience!


All the best to everyone
Kit


Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: For VonDutcheFace and others new
      #184000 - 04/03/06 09:54 AM

I agree 100%.Excellent post, I am part of this club , my situation is very very similar


Post Extras: Remind Me!   Notify Moderator  
AIDS2HIV
Unregistered

Post deleted by Becky new
      #184003 - 04/03/06 10:01 AM



Post Extras: Remind Me!   Notify Moderator  
coby
Grand Master

Reged: 04/01/06
Posts: 189
Re: For VonDutcheFace and others new
      #184012 - 04/03/06 10:49 AM

Kit-

Thank you very much for posting. You have really helped me alot and I hope that I too am able to find my way through this.

Post Extras: Remind Me!   Notify Moderator  
Anonymous
Unregistered

Re: For VonDutcheFace and others new
      #184029 - 04/03/06 11:46 AM

aids2hiv has to play police man here again...get lost ! sick of you !

Post Extras: Remind Me!   Notify Moderator  
LQZ
Guardian

Reged: 03/13/06
Posts: 391
Re: For VonDutcheFace and others *DELETED* new
      #184032 - 04/03/06 11:55 AM

Post deleted by LQZ

Post Extras: Remind Me!   Notify Moderator  
coby
Grand Master

Reged: 04/01/06
Posts: 189
Re: For VonDutcheFace and others new
      #184063 - 04/03/06 03:03 PM

Aids2Hiv-

You really do need to just realx a little. Why is it that you act like this board is for pos people only?l know for a fact that so many neg people donate to his foundation and Douche is on the money when he states that this is for all types of exposures. I'm not being nast but we really don't go to the living with hiv section and slam on you, chill out my friend.


Post Extras: Remind Me!   Notify Moderator  
KitG
Expert

Reged: 01/15/01
Posts: 103
Re: For VonDutcheFace and others new
      #184741 - 04/06/06 08:46 AM

Like you, I was convinced that my problem was caused by a communicable illness. As well as the person I had unprotected sex with, who had meningitis and pneumonia and was ill enough to be admitted to hospital, my partner also became ill with some of the same symptoms I was having, symptoms which were all suggestive of a viral cause. I too was convinced that I must have infected her with Ďwhateverí I had. And Iíve read the stories of other people whoíve experienced the same thing.

I waited for my symptoms to go away, but they didnít. In the end, I came to accept that my feelings were not necessarily facts and I became willing to let go of the ever increasing certainty I had that there was a viral cause for my condition. It was then, and only then, that I took the first step on my road to recovery.

There is NOTHING SIGNIFICANTLY DIFFERENT between your story and mine and those countless others who have been here since this forum began (1997 or 1999, canít remember which) who had the same thoughts and the same fears that weíve had. So thereís no reason to suggest that the outcome will be any different.

Post Extras: Remind Me!   Notify Moderator  
Pages: 1


What's New at TheBody.com

Additional Information
0 registered and 2 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 2316

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threadsô 6.2.3