Sero Conversion

[Anne]

Hi all, I was diagnosed positive  4 weeks ago after being seriously ill for a few weeks with all of the sero conversion symptoms including eosphagal ulcers. I started treatment 4 weeks ago and was on Truvada and tivicay. I tolerated these well. My cd4 count was 340 and viral load was in the millions. However I still continued to have a fever and swollen lympth glands. I was also treated for bacterial infection from ulcers. 4 days ago I was changed to Triumeq as doctors are concerned that I am still so unwell with sero conversion symptoms. I take it in the morning with good and feel nausea for a few hours after, I am hoping this will get better? I now feel more alert and temperature has gone down slightly. Still having night sweats. Has anyone experienced sero conversion symptoms that have been severe or lasted months?

[Jim Allen]

Hi Anne,

Welcome to the forum, Sorry to hear that you are feeling unwell.

Triumeq is the same combination i'm taking, it can take a few weeks to settle into besides sounds like you are also still healing and overcoming other issues. The lymph nodes etc can take time to come down particularly if you have multiple infections your system has been fighting off. 

I was seriously ill at some stage but at the other-end so long term HIV infection with low CD4 and VL in the countless millions had a few similar issue with infections and lymph nodes, it took me a while to get back to feeling healthy but I did. I think my lymph nodes were swollen for 3 months+ and it looked like I had been punched in the neck for 3-4 weeks. Than again like i mentioned my HIV infection had been with me a long time the last time i was sick.  Anyhow I'm sure you will be fine, many of us have been through similar, just give it time. 

Did they give you any antibiotics for the infection? Are you still taking it?

I take it in the morning with good

I take it you mean with food? Triumeq can be taken with or without food unless otherwise directed.

Best, Jim

[Anne]

Hi thank you for your reply, I’ve only ever had Bacterial antibiotic for eosphagal ulcers for 7 days. Doctor cannot find any other infections, but I do have raised inflammation markers but I understand this is normal with sero conversion. They have told me the painful glands can last a long time. I guess I am lucky that being so ill got me a diagnosis early within a few weeks of being ill. My boyfriend Has tested positive at a later stage but thankfully is now on treatment too.

[Anne]

I would just like to add your reply is very reassuring, many thanks

[Jim Allen]

You're welcome, Anne.

Look don't worry you will be fine. I know right now it's a lot to digest and, your feeling bad but it gets better.

Best, Jim

[MrAlwaysAnxious]

Anne,

I am very sorry to hear of your recent diagnosis -- I too was recently diagnosed and it still has not been the easiest. Just know that it is OK to feel anything and everything you are feeling right now, and that you are valid.

When you are seroconverting, they call this acute retroviral syndrome (acute HIV infection) -- which was my diagnosis. My white blood cells dropped significantly, my blood clotted poorly, my body was profoundly fatigued, and I had a fever of 103 for nearly a week that would not come down even with IV fluids. On top of that, I had esophageal issues as well (not ulcers, more so difficulty swallowing because of stricture). I also stopped eating for about two weeks and lost 15lb. At the time of diagnosis, my VL was 9,820,000 and my CD4 was 349.

While I still do not feel 100% right now, I do feel a lot better. My doctor told me that acute retroviral syndrome, especially cases where the symptoms are severe, can make you feel like you have mono for weeks if not months. However, as long as you are adhering to your medicine you should be fine -- it will get better as long as you work with your healthcare team and take care of yourself.

It is a scary time, and I was there just about two months ago. You can do it.

[Anne]

Thank you for your support, this seroconversion illness has just knocked me off my feet, I worked full time before and went to the gym several times a week, I am 53 years old so it is shock to me to be so weak now, breathless and still suffering symptoms of high temperatures and painful lymph glands. I will be getting my cd4 level tested and viral load tested next week as it is a month now on meds. Thank you again for sharing your experience, I can now see a light at the end of this 😊

[fabio]

Hey Anna. I'm sorry for your dx,know that things will get better in time.
I had the same symptoms except the ulcers. Like you I had 340 cd4s,about 150000 copies I think,extreme nightsweats (even though it was winter and cold),I had a fever that would flanctuated,I felt physically weak (like I wanted to sleep all day),I would get exhausted easily.
For me it took about 3 weeks or a month to feel a lot better. Now,after almost a year or more (I was diagnosed December (not the one that passed)) i am in full health and feel physically better,my appetite also got better,in general I have a lot of energy.
I believe,and hope,it will be the same for you and that you feel better soon. Also know that we are all here for you.

[TexasDragon]

Anne -

I was dx’ed in November last year ‘in the window’ so to speak. I felt really tired and had an awful cough. You can see my numbers below so I won’t repeat them here.

It does get better - within a week of starting meds I felt much much better. And so far this year I have nearly 2,500 miles on my bike. My stamina and speed are back to pre-dx.

So you will bounce back - and I hope it’s soon!

[JosephP]

Anna!
Sorry for your diagnosis but you WILL get better. It is a hard and accepting it is even harder. It has been 5 years for me and I am still dealing with it (the acceptance part!!). Fortunately for me, I wasn't sick I just felt tired and without stamina to do anything, I felt like sleeping the entire day. My CD4 was 190 and my VL was 78K. Fast forward 5 years and I have been undetectable for 5 years and my CD4 have climbed to 700. Everyone is different. Everyone heals at a different rate. Everyone tolerates the meds differently. I was originally on Atripla... Lasted four days! Couldn't tolerate it at all. Spent nights awake and when I slept for 10 mins I had the more horrendous dreams and I will wake up totally soaked... You will be fine! Give time to time and follow your doctor's advise to the 'T'.  Life is awesome and worth pursuing it!

[CraigJ]

Hi Anne
Sorry to hear about your diagnosis and hope you start to feel better soon.
Feeling better now there was a thing I was happy for after I came out of my seroconversion. I don't often talk or like to remind myself of that period. It did only last for 10 days - 2 weeks but it was the worst feeling I have ever had and it was also the time when I realised something wasn't right. I was diagnosed very early after exposure so I was fortunate not to have a progression as some others experienced.
Anne you need to know that although you might not feel it just now things DO get better and your health will improve. Mine happened quickly and I do hope you are the same. I am also on Triumeq and I put the very quick turnaround  in my VL and increase in CD4 down to this little tablet (ok so it isn't so little)

There are lots of people here who can help also the info and facts links are a great source of information. Also remember there are no silly questions when it comes to understanding and controlling your own health. Ask away as I am sure someone will remember that they too had that feeling or issue and may be able to help you with advise which you can take to your dr.

I hope you feel better soon.
C.

[Anne]

Hi All, an update after a week on Triumeq, each day since changing to this med I have noticed an increase in energy, my appetite is good, still have some ulcers and painful Lympth glands, temperature is only going up to 38 probably once a day now which is a big improvement, I feel I have put some weight back this week as I lost 4kg in last 7 weeks. Mentally this has gave me a big boost as 7 weeks with no improvement has been really tough despite the original meds I was given 3 weeks into this acute infection. Thank you for your support, you all have really helped me know now that In time I will feel well again. I am thankful that I was diagnosed early due to my severe symptoms and hospitalisation, as I would never have known or suspected I had HIV.

[Jim Allen]

Up's & downs are pretty standard at first, give yourself time to heal & adjust,  but it does sounds like you are heading in the right direction 

[Grendal]

Hi Anne - sounds like the meds are working, hope you feel up to returning to the gym soon. Are you still having night sweats? Could also be peri or menopause, I had awful night sweats when I went through it. It will take a little time to heal from the acute infection but it will get better.

Grendal

[Anne]

Hi All, temperature has now stayed normal at last, I still have night sweats, swollen glands and sore muscles/joint stiffness. Yes the menopause could be a factor in the night sweats but they were never this bad. I do feel I’m making progress now but still have a long way to go.