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KitG
Expert

Reged: 01/15/01
Posts: 103
HIV neg at 6 months. LOADS OF SYMPTOMS !
      #34931 - 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












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Anonymous
Unregistered

Re: HIV neg at 6 months. LOADS OF SYMPTOMS ! new
      #34932 - 05/31/02 08:24 AM

Kit
You are a terrific person to take the time you have. It really makes me feel much better if not to realize that there is a chance I dont have HIV, but to be reminded that there are people like you out there that are willing to take the time to help others. This is anonymous, you answered my post from a few days ago. Your response, your story, and your theory have made me feel better and calm down a little, but its so difficult when you wake up every day with this white curdlike stuff on the tip of my tongue. Im also getting little round patches on my cheeks. I realize after reading your post that it could be from stress especially since I have had it for 6 months and it hasnt gotten much worse.

You said you had a minor yeast infection in your mouth too
what was it like and what did your doc say about it.

You adressed most of my symptoms and I realize they could possibly be attributed to prolonged stress.

But the one that really scares me besides the minor yeast infection is the numbness and tingling I had in my right hand and pinky finger for two weeks. My forearms also burned and hurt, I mean bad and several times I woke up and my right hand was completly numb (dead )Now there was a guy named FC Neg He had the same exact neuropathy symptoms as me and he tested neg at 3 months and I havnt seen him back these symptoms were coupled with light night sweats. Both went away in 2 weeks and thats another thing that scares me

Why do the symptoms come and go or be replaced from other symptoms.

The only symptoms that have lasted was the feeling of pain in the lymph system. It hurt when I moved in certain directions or they throbbed or had a burning tingling sensation.

The yeast infection in my mouth and the petechiae
The petechaie wouldn,t even scare me so much except for the fact that I got them on my tonge Unlike the petechiea on my body that has lasted six mionths the ones on my tonge fell off in two days.

Thanks again Kit



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confused
Unregistered

Re: HIV neg at 6 months. LOADS OF SYMPTOMS ! new
      #34933 - 05/31/02 09:04 AM

Kit,I to think your post is great and appreciate the time you take to help others.As anonomous said its hard to believe its stress when we never had these problems until our possible exposure,Ive had many possible exposures over many years and never symptoms like this.As you all know ive tested neg out to 6 months and i am making myself believe them,but its not easy.I to still have symptoms Swollen nodes confirmed by doc.muscle aches, headaches,tingling and numbness in little finger and one next to it,ive also woke up in the middle of the night with half my hand completely numb a few times and ive had these symptoms for aprox. 5 months.Everyone thinks im nuts also,but i was completely healthy until this exposer,Im not sure what i got and im trying to believe its not hiv based on my test,but what it is im sure it was from sex.Take care all and I know were not crazy.



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uhohblita
Guru

Reged: 05/02/02
Posts: 273
Re: HIV neg at 6 months. GREAT POST new
      #34946 - 05/31/02 01:06 PM

Kit,
THANK you for the post. This is exactly what Im talking about. What we need to be doing on the board. I would like to know if your symptoms have completely gone away and what may be remaining? Also, have you been in touch again with the female and how is she feeling? I tried to contact mine again, with no luck. Bummer.

Confused,
It also seems that I wake up with my hands numb. I was amazed to read that you had that. My hands are numb and also around my mouth and legs very stiff. Its always during the night. Almost like an "attack" of it.

The other thing that defines my situation apart from HIV is that I never had a (bad) fever. Also the other thing I forgot to mention is that my liver ALT is 180 and the AST is 80, they are both climbing. I have not been drinking for 6 months. Ultrasound normal.

Its very frustrating being on anxiety meds as well because that possibly brings on more side-effects and confuses everything. Meds can do weird things too.

Again, thanks for the post.

-uhoh



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TerryD
Unregistered

re: SYMPTOMS... new
      #34967 - 05/31/02 04:31 PM

The probelm is once you buy into the hiv=aids construct anything can be ARS or hiv-related. Its all anti-sexual and de-humanizing. The medical profession can only make money of those who are ill and will label you with some kind of illness and then provide the pills to "treat" it.



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Freakin'
Unregistered

Re: HIV neg at 6 months. LOADS OF SYMPTOMS ! new
      #35003 - 05/31/02 08:42 PM

I know this might sound a bit useless but these tingling and numbness sensations you are experiencing could very well be related to constricted nerve passages. This could be related to stress but, I urge you to examine the way you position your head in relation to your spine when sleeping at night. Try and make sure your head and spine are in perfect alignment throughout the night. This can be accomplished by rolling up a towel (long and cilindrical) and stuffing in in the front of your pillowcase. This will elevate your mid neck and put you in alignment. If you can have somone look at your spine and neck after this is done to ensure that you have done it correctly. Try this for a few nights and see if that makes the symptoms go away.
REALLY TRY THIS WHAT DO YOU HAVE TO LOSE!
P.S. Dont sleep on your stomach as this will really effect your spinal positioning.



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Canadian
Unregistered

Re: HIV neg at 6 months. LOADS OF SYMPTOMS ! new
      #35152 - 06/03/02 02:32 PM

Hey Kit,

Very similar experience. Had a high risk exposure 2yrs ago and tested neg at 9 and 18 months with Elisa.

Had the famous ARS like symptoms and my remaining symptoms are the following;

Excessive sweating of hands, feet and armpits (I mean the min i wake up to night time.

Extreme pain in my Right Upper Quadrant (where my liver is)
Had ultra sound with no avil..presently taking pills to reduce acid.

Tingling sensation in both my legs and hands with sensitivity to cold/heat in the above mentioned areas.

Stiff neck with soft noe on my left side.

Dr. put me on antidepressants. Anxiety gone down but symptoms remain!

Did you get a Western Blot or viral load to completely rule out HIV?

I was told by a specialist that was not required since Elisa was done past window period on 2 occasion.

I know the anxiety is created by my fears but these symptoms are not created by my head...I've been in this body for 34yrs and know it pretty well.

Something is wrong...just tired of having docs look at me funny.

Your Canadian Neighbour.



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Anonymous
Unregistered

Re: HIV neg at 6 months. GREAT POST new
      #108014 - 08/10/04 05:26 PM

LMAO WOW THE FACT IS THE TINGLING IS ANXIETY AND STRESS. LOOK IT UP ITS THERE ALL OF IT AND THAT FACT THAT YOUR HIV NEGATIVE AND STILL POSTING PROVES YOU HAVENT GOTTEN OVER ANXIETY AND FEAR

YOUR ON A HIV BOARD AND U DONT HAVE IT END OF STORY.

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