Hi all,
I have just had a few random blood tests done and the doctor called me to say that they all came back ok, but I tested positive for CMV - she said the hospital left a note saying I should have a test for HIV.
I’m just wondering why this would have been recommended when I have no Idea how I could catch it through any obvious means but they are suggesting this?
Many thanks,
Andy
Tests were carried out based on itching all over for weeks.
Hi Andy , CMV is usually a harmless herpes virus that does not cause a problem for most people unless their immune system is weakened . I'm guessing that because you have had a reaction to the CMV virus the doctor wants to check that your immune system has not been compromised in any way . If you have not engaged in any risky sexual activity it is very unlikely that you have HIV , so don't worry about it . The doctor is just working on eliminating possible causes of your health issues .
Thanks Griffon. I’ve been married 10 years to my wife and have been a good boy, so I’m not worried in that sense though I did have few sexual partners in the months before where I maybe should have been a bit more careful so a tad worried I guess!
Thanks for your response.
Andy
HIV is about the hardest to catch of the STI's . Only you know what you have done , but from what you are saying it is very unlikely you have HIV . If you are in the UK one reason the doctor may wish to test you is because some time ago GP's received a directive from government to test more people for the virus .
Hi Griffon, I have had my tests now and a bit more time to think about things and research my past. Prior to my 10 year relationship I was in a few short term relationships, and I can recall going to the doctor for which she thought was scabies on my legs. I’m now worried about the timing of this as I also had tonsillitis and flu symptoms + the rash of scabies looks identical to a HIV rash.
I have been ill many time of the years with a weak immune system and tonsiltus , which I’m awaiting to Have my tonsils removed. My lympnodes are swollen and painful most weeks but I just try to battle though it. I also have a fatty liver which prompted the test along with CMV.
As it is 10 years since those events, do you think it is possible I would be a lot worse by now?
Thanks for your help.
Hi Andy , The symptoms you describe are a worry . Scabies as you know is caused by the sarcoptic mange mite and is not connected to HIV in any way . A skin scraping taken at the time would have confirmed infection . HIV is not an easy infection to acquire and is most readily spread through anal sex amongst gay men . As I said before , only you know what risks you have taken . Scabies is an unusual infection to catch and suggests you may have lived a rough life at some point . Have you ever injected drugs ?
As you have now had the tests all this is really speculation . Once infected with HIV the CD4 blood cell count is depleted at roughly the rate of 100 per year . A healthy adult has a count around 1,000 , so it can take about ten years for the immune system to become compromised to the extent it struggles to function .
Can you come back and let us know what your results are , the information helps build knowledge that we can then help other people .
Hi Griffon,
I have never injected drugs or anything like that. I haven’t had a rough life but the house I lived in at the time in the country had a problem with mice, so that’s all I can think of in relation to scabies. I didn’t have any scrapings as you say, she just looked at it and said try this cream/medication and it went a few weeks later.
If it depletes at a rate of 100 a year then I would suspect I would be near 100ish now, and if so would I be a lot sicker than I am now? I guess I just have to wait until Monday when I get my results. If it is positive, this will mean I’ve had the virus for 10 years. does this mean I will have a short life expectancy?
Thanks again
Hi Andy , Sounds to me like the scabies was a wrong diagnosis , I'm afraid I don't have much faith in GP's .
I can only advise from my own experience as I'm not qualified in any way .
I was sexually very promiscuous for thirty years and started to experience non specific health problems ten years ago , when I got tested and diagnosed with HIV , Hepatitis B and syphilis . Because of the coinfections it is hard to say which were causing what symptoms , and my CD4 was 350 . I was started treatment immediately and now ten years later the CD4 count is back to 980 , which is good . Basically it's as good as not having HIV at all . What has caused more problems is the Hep.B . At diagnoses the Hep.B viral count was off the scale and I think this was mostly responsible for my ill health . I also now have fatty liver , but this is possibly a side effect of the medications I'm on . It is vey possible I was HIV positive ten years prior to diagnosis . HIV treatment has come a long way and medication greatly improved , if you are HIV positive once on treatment you should have a normal life expectancy .
Thanks Griffon.
When you say the wrong diagnosis, and based on the information I’ve given you, do you now suspect HIV as a high possibility?
My wife is pregnant so I’m extremely worried for her and our baby :/
How have you coped over the last 10 years? Has it been a difficult journey mentally and physically? What symptoms did you have which you feel we’re possibly linked to HIV?
I’m glad to hear your CD4 is back to normal and you sound as you are doing well.
Thanks again for your help
Your wife being pregnant does add a degree of urgency to all of this , because if you are positive she will obviously need to be tested and if necessary started on treatment as soon as possible to stop transmission to the child . The good news is HIV medications are safe to take during pregnancy and and should prevent the baby being affected .
Looking back the symptoms I suffered for several years before finally getting tested were fever , fatigue , gum infections , sharp pain in the heart , continual headache ,blurry vision like I was looking down a tube , eye infections and loss of cognitive function in a sense of not being in the real world and seeing objects but the brain not registering what it was seeing - hard to describe . Over the years I have had other infections including suspected leptospirosis , something that caused malaria like symptoms ( never got to the bottom of it in spite of numerous tests ) and gonorrhoea . Plus the usual colds , flu and food poisoning . It is very hard to say what if any symptoms HIV caused because both HIV and Hep.B can cause the problems I have experienced .
Also turned out on diagnosis I had lost a degree of kidney function , it seems likely that the heart pain and cognitive disfunction were due to the HIV , because untreated it does affect the brain , heart and kidneys .
Your comment - “in a sense of not being in the real world and seeing objects but the brain not registering what it was seeing”, has sent my head spinning ...
This is exactly what I’ve been going through - I was terrified and in hospital for a week because of this exact symptom. I had 2 MRI’s and they found nothing. I would watch tv, and my brain would see images and make no sense of what was happening. I would go into the kitchen and it would feel like someone else’s kitchen, like I was detached from what was going on around me.
In terms of my vision, I have snow vision, so everything is like static, especially in low light. I have also lost 30% hearing in on ear and have tinitus 24/7 in that ear - or more in that side of head should we say.
I’m very worried I have this now, and wrongly, a little relieved that I may have answers to the crazy problems I’ve had over that past few months. The reason I’ve coped the last 2 months, and things have eased, bar the tinnitus is I exercise, eat healthy and walk a lot.
I know nothing about hepatitis B, which I’ll investigate now but sounds like I have one or both of these.
I also just discovered that you are routinely tested for HIV when pregnant so my wife is hopefully all ok there.
The question I’m scared to ask - has the brain fog, cognitive distinction improved since treatment?
Thanks again for your time.
One major thing to add - and I did say my health has been good last 2 months but I’ve had itching all over most days with no rash which has driven me insane. No pain but very annoying and only distraction from it is exercise. HepB would be an interesting diagnosis, as liver disease is well known for the rash-less itching It causes.
The good news with HIV is that it is so easy to treat . The main problem can be side effects to medication , but usually a combination can be found that suits each individual .
Because when I got my diagnosis HIV was the principle factor to get attention , the Hep.B took a back seat , but it is beginning to look to me like it may be the more problematic of the two . Certainly being co infected complicates treatment . Ten years ago when diagnosed a liver scan showed it in good condition , surprisingly so in view of my viral load . Now a recent scan is showing fatty liver . As I don't drink , and the Hep.B viral count was brought down to undetectable soon after treatment began , it seems to me it is likely that it is treatment causing this , especially as cholesterol levels have risen considerably from the medication . The fatty liver is still new and I haven't had a chance to go into it yet . The main problem at the moment is a mystery arthritis that may be a side effect of medication or a reaction to infection or age , this is on going as we speak . One side affect of the old Travuda drug is kidney damage and I have lost about 50% function . The kidney damage is irreversible , but there is now an improved version of Travuda that does not harm the kidneys .
The good news is cognitive function does seem to recover just fine , and it has in my case .
Well I hope things improve on the arthritis side of things. I’m not sure how old you are but I’m 40 and can feel that bigger creeping in.
I do have chest pains a lot but they’re very much on the surface and sometime stop me turning on my sleep because the pain is so bad. I did and an ECG yesterday which came back clear which I was expecting, but it does feel like it’s the nerves/lympnodes in my chest as they are sensitive to touch.
Could t wait until Monday so have test being delivered tomorrow and will still do the Monday as planned. Will let you know.
Cheers,
Andy
Any information will be helpful when giving advice to others .
And I forgot , one other symptom associated with HepB that I have not seen mentioned anywhere is continual belching .
I have that and am bloated all the time which makes me fatigue, but have put it down to my IBS for now.
I feel like I’m having this test by chance, as it would have never crossed my mind to have one being married in a relationship for 10 years. I’m hoping I’m not at stage 3 with it being so long, just writing all my symptoms down makes me realise what a state my health has been in.
Whatever the result, it’s changed my outlook forever.
I think HIV will not be the worst outcome . I have read accounts of people seriously ill in hospital with CD4 counts down below 100 who have recovered well as soon as they got treatment .
Hep.B may be more difficult if the liver is damaged .
Of course it may be you don't have neither .
One question , do you drink alcohol ?
I have drank most weekends from age 20 to 35 years, just a social drinker but a binge drinking for sure. I gave up completely New Year’s Eve - no reason other than I wanted to be healthy as possible. I’ve rowed about 5000 metres each day over the past 2 months trying to shake this itching and Improve my liver. I have lost a stone in 2 months and feel better for it but thisitching has not improved.
Can I ask how old you are and if you were ever a drinker or used recreational drugs? Not a problem if you don’t want to answer that!
Thanks
Great that you have stopped drinking , even though your consumption was pretty normal alcohol is about the most harmful thing you can expose the liver to .
I am 65 years old and never used drugs or drank , but had a huge sex drive when I was younger , some might say an addiction . A rough estimate would be 10,000 different partners . I wasn't bad looking when younger , and cruising as a gay man it is not difficult to notch up a large number of liaisons .
Wow, that is a lot of partners. I guess statistically the odds of catching it with those numbers is going to be a higher risk.
What prompted you to get checked? Was it routine or something health wise?
Are you feeling in quite good health overall? Great you’ve never been drinker - that must be paying dividends now.
It’s been a long 24 hours waiting for this test. Wish it did H.B which I’m equally concerned about but will see Monday.
It took at least 20 years for me to become infected , which considering the number of sexual partners goes to show HIV is not that easy to catch . Having an existing STI increases the chance of catching HIV , so it's possible I caught Hep.B first . I got tested because I had the symptoms I have already described , and being self employed it was beginning to become impossible to continue my demanding life style .
One point , when I was diagnosed ten years ago there was a spike in the number of HIV infections in this region . The number of cases the clinic were treating about doubled in two years . This was the West Midlands .
I'm now entering old age , and having never been old before it is hard to know if my aches and pains are due to age or infection or medication or combination of all three . At an HIV viral count level of undetectable and high CD count effectively I don't have HIV . Liver may be a bigger problem and the arthritis that is impacting on my life is possibly be due to the medication I'm on . I start a new one next week to see if that changes anything .
Instant test came back negative. A little relieved but need to see what happens Monday, as I’m not too convinced with these instant tests and doesn’t check for Hep.b
If it’s not any of these then the testing goes on. Something is not right and my itching is driving me insane. Your the first person after months of research to have so many symptoms that match mine, so there must be a chemical link between what I have and you have even if they are a different disease.
And another thing I remember now , I also had symptoms that could have passed as IBS .
From all this I assume you are going to get tested for Hep.B ?
Yes, hep.b and HIV results will be back Monday and just the home test for HIV tomorrow sometime.
IBS has definitely been a huge problem for me but not as urgency to go, just loose stools and sometimes pale. The lake stools have gone on the last 4 weeks for the first time in years.
Hi Andy , have you had your results back , and what are they ?
Hi Griffon, they came back today as health worker was off yesterday sick. They were fine, but they adamant I went to hospital for the chest pain which I did and after hours of waiting, they said I was free to go home as bloods and ECH were normal.
So I guess I’m looking at a liver issue like fibrosis or something.
Thanks
Well that's really good news . Have they done a liver function test ? Fibrosis doesn't happen for no reason as far as I know . Just a suggestion , and I know you said you have never injected drugs , but 80% of intravenous drug users have Hep.C . Anyway that must be a weight off your mind . I'm still really interested to know if you manage to track the cause down because your symptoms are so similar to mine .
It is a relief but just process of elimination as still in trouble with these symptoms. Tested for Hep.c which was also fine. I’m waiting for a scan on my liver but could be a few weeks due to Covid-19. I had a fatty liver 2 years ago and my diet/ lifestyle hasn’t been great since so it could have gone downhill but we’ll see. Liver function was fine, but I know too well that you can be close to stage 3 liver disease and these still to come back normal. PBC is rare in men (1in 10) but is a disease of the bile ducts and itching all over is it’s main symptom.
I’ll keep you updated. Let you know how you get on with your current symptoms and good luck.
Walt46 , do you have any further updates. i am on the same boat. i have stage 2 fatty liver now.. any suggestions would help
Hi, I had a fibroscan done which is pretty much the gold standard and it came fine, not even a fatty liver - I think my score was 2.8 or something. I’m happy with that but I have been told I had a fatty liver a few times over the years so maybe eating healthy for 5 months with exercise and no alcohol the last 12 months ( bar a few beers at Xmas) has made the difference.
I bought a rowing machine, worked out for just 20 mins a day on that, ate health for 6 months ( no processed meals) Just potato, chicken, pasta combos - boring but it’s just what I went with. A year later my stools are normal colour for first time in years and I sleep better.
Only you can make a difference. You know what you need to do, just do it and make it a normal routine rather than a hassle, it gets easier though there are hard days of course.
Just don’t drink if you do, not even one. I have just a couple now and then and that is fine for me.
Hope this helps
Hope you are doing fine
HIV Tested at 8 weeks from possible exposure 
Hiv pos from genital rubbing 
Mouth sores and throat soreness
Buttons on the back, shoulder and torso