Author Topic: Just Confirmed with Wester Blot (Read 14211 times)

some_user123 · « **on:** February 08, 2014, 05:17:19 pm »

Hello,

I found out I was positive when I bought two OraQuick tests from the pharmacy. I went to my primary care, and they ran the ELISA test to confirm and it was positive. They sent it off to confirm with a Western Blot test. The WB lab comments are below:

HIV 1 Abs Confirm:
    SEE COMMENT
    Comment:
    HIV-1 ABS + BANDS [WB] W/REFLEX HIV-2 ABS [WB]
Analyte Result Reference Range
HIV-1 IgG Antibodies -WB Positive * Negative
Abnormal Flag Code: A
gp160/120 Present * Absent
Abnormal Flag Code: A
p65 Present * Absent
Abnormal Flag Code: A
p55 Present * Absent
Abnormal Flag Code: A
p51 Present * Absent
Abnormal Flag Code: A
gp41 Present * Absent
Abnormal Flag Code: A
p40 Present * Absent
Abnormal Flag Code: A
p31 Present * Absent
Abnormal Flag Code: A
p24 Present * Absent
Abnormal Flag Code: A
p18 Absent Absent

What is driving me mad is this asterisk * and the "Abnormal Flag Code: A". I found this on my online chart from the hospital. It was posted friday, the 7th, and I never got a call from my doctor. I'm expecting one on Monday, but hate the weekend wait. I was just curious if anyone may know what the asterisk and flag means. I'm guessing "abnormal", but not sure if that's abnormal-good or abnormal-bad.

Thanks

Irish Eyes · « **Reply #1 on:** February 08, 2014, 07:30:28 pm »

Being newly diagnosed 12/26/13, the amount of info to absorb can be mind boggling.
What's important is, you tested and result is Positive.

The two main numbers to track are your Viral Load and CD4, the rest I leave to the doctor along with all the other blood test results e.g. taxoplasma, Cmv Igg antibody, G6Pd blood. I've no idea what these are, and am not concerned.

Have a good weekend, relax.

some_user123 · « **Reply #2 on:** February 08, 2014, 10:05:54 pm »

Thanks for the reply, and it is a lot to take in. I have an appointment with the ID doc in a week, so all of the important tests will be administered then. I'm upset that I am positive, but I've accepted it as the reality. But, I'm just concerned with how far I've progressed, and was hoping the western blot could hint at some of that.

aaware72 · « **Reply #3 on:** February 10, 2014, 02:54:24 am »

Sorry to hear the news.

You will need to have another set of blood tests done to determine your CD4 count and your viral load.

some_user123 · « **Reply #4 on:** February 10, 2014, 09:06:34 pm »

I have an appointment with the ID doctor next Monday, so hoping my CD4 is not dangerously low. I'm afraid I've been positive for at least 2 years. Looking back, I had very bad flu-like symptoms and a sore throat in Feb of 2012, about a month after possible exposure.

Of course I'm reading into every itch or blemish on my skin. I had a very bad sore throat with white spots in my mouth a few weeks ago, after a few months of heavy drinking. The sore throat and most of the white went away, but some of the white is still on my tongue and no matter how much I brush it won't go away. I'm hoping this isn't oral thrush, but from what I found online it sounds like it...

Ann · « **Reply #5 on:** February 11, 2014, 06:28:30 am »

Hi SU, welcome to the forums.

Looking at your WB result, it looks like all but one band was reactive and this means it's a firm positive result. It's also not likely to be a "brand-new" infection, as early on more of the bands can be non-reactive. Sorry to be the bearer of bad news.

There's no reason to think that your CD4s are going to be awfully low if you think you've been poz since early 2012. Try to not worry about this too much.

That white stuff in your mouth - all I can say is that oral thrush hurts, so if trying to scrape it off your tongue doesn't mean someone has to come along and scrape you off the bathroom ceiling afterwards, then chances are it's not thrush. Also, things like carbonated beverages would hurt to drink, and foods that are the least bit spicy would have your eyes watering. It's normal to have a certain amount of white gunk on your tongue.

Hang in there and try to not speculate too much about your numbers. Whatever they are, you're going to be ok. What's important is that you know about your status now and can take the necessary steps to protect your health going forward.

Ann

some_user123 · « **Reply #6 on:** February 11, 2014, 09:23:27 am »

Ann,

Thanks for your reply. A week ago, I was kind of hoping that this was a very early infection, but I'm starting to come to grips with the possibility of 2 years or even longer. The seroconversion illness should have been my hint, because it was so textbook. I was in a monogamous relationship prior to that with a couple of flings after the relationship ended so still not 100% of when and where exposure occurred.

Each gap between news seems to be the worst part. It's also difficult to work with anxiety, but its critical to maintain my job for insurance. Whatever the result, I'm fortunate I can afford treatment right now. I'm not really sure how to break the news to my mom, but I really need to tell her. We've had a very close relationship growing up, and I have a very open minded family. I just know it will crush her. I haven't cried once through this, but when I tell her that streak will be broken.

My tongue kind of hurts on the sides of it, but not incredibly bad. I don't really drink soda, but I do eat spicy food occasionally. I basically add habanero, tabasco or Sriracha sauce to everything (even on mac n cheese

. Despite the bad news, it's reassuring that my symptoms may not be thrush. I've read that usually occurs in late stages.

Thanks again,
SU

pittman · « **Reply #7 on:** February 11, 2014, 08:04:41 pm »

Hang in there. Yes, it is very stressful for most to find out, but treatments are very effective and now you can start taking care of it since you know your status.

I think for me it took several months to get to where I was less preoccupied with it and about a year to feel (mentally) back to normal and no longer stressing so much about it. That could also be because in the beginning, there were lots of doctor visits which each reminded me and kept my thoughts churning a bit over it all.

It does get better, and you adjust. I hope that if you share the news with your family as you said you plan to, that it is a source of support for you. Make sure that if and when you share, you can reassure them that you are in treatment and should be fine. I think the calmer you can be about it! the better they will be positioned to support you as they will likely take their cue from you. (unless they are independently educated about HIV)

2tcells · « **Reply #8 on:** February 11, 2014, 09:28:07 pm »

Sounds likr trush to me. When I was in the hospital they said it was the worst trush they have ever seen and I had it for around 6 months prior and never had any pain from it. I would brush it off it came back it was thick and white on my toung gums roof of my mouth everywhere and started in spots. But I dont think u need to worry about trush they just give u some stuff to swish and swallow for like 2 weeks and its gone. I also take fluconozole once a week to keep it from comming back. Just dont get the mint flavor meds ask for bubble gum its way better

for the mouth wash. Do u have dry or flacky red skin on your face?

some_user123 · « **Reply #9 on:** February 12, 2014, 12:38:50 am »

Yes! It's a little red from my eyes in swooshing fashion down to my cheeks. Not incredibly noticeable, but very flaky. I am using St. Ives Daily Hydrating lotion twice a day to keep it from flaking noticeably, but its been a constant battle for the past week or so. All over my body it's been really dry. The spots started all down my throat, tonsils, tongue, gums for about a week, then all those went away, but the tongue gunk is still there, just not as noticeable. I also have what I found online to be oral leukoplakia on the side of my tongue. I had a sore throat during that week, but not as bad as strep throat would be. The implications of these symptoms are worrisome, so I'm prepared for serious news. Just hope I respond well to treatment.

As for telling family about my status, I'm thinking of waiting until I have more concrete news and see how well I respond to treatment. I don't want to tell my mom that I have things like thrush and OHL so she can go research clinical stages and get freaked out (like I have). Ideally, treatment will work out and I can show her that yes I have this condition, and yes I'm getting better.

zach · « **Reply #10 on:** February 12, 2014, 01:38:10 am »

i've dealt with the skin side of thrush, pretty damn bad. prescribed ketaconazol in both pill form and topical cream. i use that when it gets totally out of control. but really, what gives me the most relief. tea tree oil, in a variety of forms. i use bronners tea tree soap to wash my hair and areas that outbreak, and during bad outbreaks 100% tea tree extract (go easy, stuff smells like turpentine) and a tea tree and lemon oil.

one thing a doctor told me... he thinks 90% of people mistreat their skin. i was told to not use any product containing sodium lauryl sulfate (sp?)

2tcells · « **Reply #11 on:** February 12, 2014, 02:31:27 am »

I have used ketoconzole cream and shampoo for the dermatitis on my face and body but what works much better for me is hydrocortisone 1 % its over the counter and head and shoulders. The head and shoulders is good to wash your face with then put the cortisone on after. From what I have read it should go away when ur cd4 is above 300 or 350

some_user123 · « **Reply #12 on:** February 12, 2014, 11:05:25 am »

Thanks for the suggestions. I don't think the St. Ives has SP, but it has a whole bunch of other chemicals so I'll probably switch to one of those. It's kind of remarkable, but I bought some yogurt, and I think some of the white has receded, but still plenty toward the back of my tongue. I just want to start treatment as soon as possible before any noticeable symptoms arise. I write software, so luckily I get to work from home 4/5 days out of the week, but on that one day still don't want anyone at work suspecting... It's not exactly the most open minded environment. I'm at least 20 years younger than everyone else I work with.

Newpositive · « **Reply #13 on:** February 14, 2014, 06:40:55 pm »

Hey SU,

I've just check your post. Let us know the results of your appointment with the doctor on Monday. I hope you've got the chance to start treatment soon as you said you've been infected for 2 years or even more than that.

Quote from: some_user123 on February 12, 2014, 12:38:50 am

As for telling family about my status, I'm thinking of waiting until I have more concrete news and see how well I respond to treatment.

This is exactly how I feel. Firstly I need to get used to living with Hiv and how I'll respond to treatment. I'll need to show my parents that Hiv is not a death sentence anymore and that there is effective treatment available and I'm already taking all the right medication. They have no information whatsoever about Hiv/AIDS but what the media says (which is most of the times not good, especially here in Brazil). So it will be overwhelmingly shocking for both of them.

Hope your're doing fine SU,

All the best

some_user123 · « **Reply #14 on:** February 14, 2014, 07:18:53 pm »

Thanks! I'm getting through it. We know someone who has been positive for more than 21 years and is undetectable so my Mom should be aware that it's no longer a death sentence, but she is going to be thinking about her baby. My mom raised me by herself along with my younger brother who is in the military. So now, she's going to be ultra worried about both of us.

She's having a hard time adjusting to life without us. I lived with my mom from birth to 19, then again from 23-25 (for college). I moved out last November, and my brother sent to San Diego in November. My mom and I have always been really close, because she had me when she was 15. As I've said before, I will cry only when I tell her. I'm going to try to stay strong when I tell her, but she's going to think of death.

I've had some indication that my lab results will probably not turn out well. I'm hoping this will serve as a warning to Googlers who stumble upon my post looking for answers: not getting tested for 3 years is very stupid. The glimmer of hope is that I've been fairly successful in my work recently, and I have am fortunate to have good insurance (first time in my life), as so many do not have access to healthcare in the world.

Well, I will continue to post updates about my doctor's visit. I am keeping a good attitude, despite some of these warning signs like thrush.

If we stay strong, we'll get through this

Thanks again for responding

Newpositive · « **Reply #15 on:** February 14, 2014, 09:11:15 pm »

Hey SU,

it's so good to know that you have a close relationship with your mother. I'm sure that despite the shock she will face at first, she'll give you all the support you need.

I've got a very close relationship with my parents as well. I don't live with them since December 2012 but we see each other very often and we travel together every year. Actually I live by myself. I must say that they are my best friends as I tell them everything. I told them I am gay a couple of years ago and they gave me all the support. However, it is different this time. Telling them I'm Hiv+ will not be easy.

The day will come and when it comes I hope it will be fine for all of us who fear disclosing to our beloved ones.

Best Wishes,

some_user123 · « **Reply #16 on:** February 17, 2014, 07:14:59 pm »

Just came back from the ID doctor. I have a really good feeling about him, and his staff were very friendly and professional. They ran a bunch of tests including: CD4, Viral Load, Kidney/Liver function, bone density, EKG (was complaining about tight chest) and the genotyping test. They scheduled an appointment for 3/17 to discuss my lab results and treatment.

They prescribed Nystatin for the thrush and Triamcinolone Acetonide Topical ointment for some of the rashes. They seem pretty comprehensive there so I'm happy for that. Hopefully all turns out well, will keep posting.

some_user123 · « **Reply #17 on:** February 27, 2014, 10:49:20 pm »

So ... its been 10 days since my first visit with the ID doctor, and I called them a couple of days ago to see if my cd4 count was in. Well, she said it wasn't in the computer system so she'd call me back if she found them. They did a lot of other blood work, and I expect the genotype test to take a few weeks. So, was wondering how long it normally takes to get your first cd4 back?

Jeff G · « **Reply #18 on:** February 27, 2014, 11:11:21 pm »

Quote from: some_user123 on February 27, 2014, 10:49:20 pm

So ... its been 10 days since my first visit with the ID doctor, and I called them a couple of days ago to see if my cd4 count was in. Well, she said it wasn't in the computer system so she'd call me back if she found them. They did a lot of other blood work, and I expect the genotype test to take a few weeks. So, was wondering how long it normally takes to get your first cd4 back?

It has taken my clinic up to 2 weeks to get it done, sometimes less . They tell us in the lab to give them 2 weeks .

Irish Eyes · « **Reply #19 on:** February 27, 2014, 11:35:11 pm »

It took 4 days to get mine, though clinic is connected to university. All bloodwork done in-house.

2tcells · « **Reply #20 on:** March 02, 2014, 01:49:34 pm »

4 days at my drs and I have to get it taken at a different business

zach · « **Reply #21 on:** March 02, 2014, 01:54:03 pm »

i always make an analretentive point to ask that lab results also be mailed to my home address.

if it weren't for those labs i insisted on, i don't actually have a single piece of paper saying "he's got teh aidsey" or a prescription for meds

kind of makes one feel powerless

some_user123 · « **Reply #22 on:** March 03, 2014, 04:26:11 am »

Thanks everyone. My clinic isn't physically connected to the hospital, so maybe it takes longer. Just getting anxious. I told my mom a week ago, and she's dealing with it the best she can.

However, I'm not. I thought I was handling this well, but I guess someone's gotta break eventually. Tonight has been really hard on me for some reason. I just cried for the first time after almost of a month of knowing. All of the thoughts of being alone for the rest of my life came rushing in. When it is said that you can live a "mostly normal" life, they mean clinically. Mentally, this doesn't feel right. I'm an introverted person, but don't really want to live this way. I'm not afraid of dying, but I'm afraid of having this shittier lonelier life I've worked up in my imagination. The absolute worst part is that I knew all this would happen. I'm really hating myself right now. I don't really want to join in a circle with strangers, esp since I live in a city where you bump in to people everywhere. I don't know where else to seek mental help.

Irish Eyes · « **Reply #23 on:** March 03, 2014, 03:01:51 pm »

Try not to be so hard on yourself, with the uncertainty the mind wanders. Life is not going to be lonely. There are many here that were diagnosed 20+years ago and have full and successful lives.
Once your numbers and everything are under control, adhearing to the meds should be like taking a vitamin every day and carrying on with your daily life. As for disclosing your status, it was a huge step to tell your mother. I have a large family and disclosure for me is years away if ever.
Be strong, take care, and keep smiling.

some_user123 · « **Reply #24 on:** March 11, 2014, 07:13:01 pm »

Update: Some of my results came back.
CD4: 242
VL: 46,000
Kidney, Liver Function were good. HAV, HBV, HCV all negative.
Genotyping test hasn't come back yet, but I'm hoping it is good.
She also mentioned another test that they did that came back good, which means I can take a certain medicine. I'm not sure what that is, but kind of in a daze from the news. I know these results could be worse, but was hoping for better ...

Question: How many years does it typically take to see CD4 and VL like this? On average. I was tested negative in September of 2010. I got really really sick in January of 2012, so figured that was the seroconversion illness. That means I've dipped to 242 in just 2 years (4 years worst case assuming it wasn't a false negative).

pittman · « **Reply #25 on:** March 12, 2014, 11:16:57 pm »

Simple answer is that you can't tell in an individual case. Applying an average to you specifically is really not a good way to know. If you had your last negative test in 2010 and it's been about four years, that is your window.

When diagnosed, my numbers were very similar to yours and I estimate that was after 2-3 years based on my most recent negative test. That would be a faster than average progression, but still within normal range.

Longer answer- When untreated, 50% reach AIDS stage (CD4< 200) by 10 years. Think about the phrasing. Included in that 50% is everyone who reached that point at any time in the first ten years, even if that was in year one. It also means 50% of the people with HIV did not yet yeah that stage at the ten year mark.

Hopefully that starts to show how trying to apply an average to an individual case is not very meaningful.

See the following reference for the 10 year average and you can look up other discussions on slow and rapid progressors online as well.

http://aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/hiv-in-your-body/stages-of-hiv/

some_user123 · « **Reply #26 on:** March 13, 2014, 09:01:02 pm »

Thanks Pittman,

I guess it is just bad luck or my crappy habits. Before developing thrush, I was drinking bourbon heavily for several weeks. I've also been very stressed at work. Between alcohol consumption and stress/anxiety, guessing those could have been contributing factors along with any that I don't know about. Hopefully my genotype test comes back alright...

I'm going to be very busy at work for the next couple of months (great timing), so I'm also worried about symptoms from treatment making me feel like crap. Is it more likely that there are more extreme symptoms the lower your cd4 count is?

AusShep · « **Reply #27 on:** March 13, 2014, 10:06:21 pm »

Quote from: some_user123 on March 13, 2014, 09:01:02 pm

... so I'm also worried about symptoms from treatment making me feel like crap. Is it more likely that there are more extreme symptoms the lower your cd4 count is?

Since you've already had opportunistic infections, you should talk to your doctor about immune reconstitution syndrome, and whether that is likely given your numbers and OIs.

242 really isn't too bad, and I wouldn't expect there to be much concern beyond the normal adjustment to meds. But they should be talking to you about this when it comes time to prescribe.

some_user123 · « **Reply #28 on:** March 17, 2014, 10:56:15 am »

Thanks AusShep, I will definitely add that to me my questions to bring up today. My appointment is in 3 hours. To correct some of my results. I finally have an electronic copy of them instead of hearing them on the phone.
CD4: 252 (corrected from 242)
VL: 40,690 (corrected from 46K)
CD4/CD8 ratio: .35

Risk factors for IRIS are low CD4 and low CD4/CD8 ratio which I have. At least 252, it isn't too bad, but I'm guessing since its been a month later, my #s have worsened.

Thanks

some_user123 · « **Reply #29 on:** March 17, 2014, 04:21:58 pm »

So, just got back from doctor's appointment. I will be starting Stribild once I get it filled (tonight or tomorrow). Also my genotype results were good - no mutations

. I did ask about why my cd4 and VL were so bad after only 2-4 years of infection, and I guess there's no real good answer. She typically sees a bad genotype test with rapid progressors, but mine was good. I guess everybody is different.

I look forward to reporting some good numbers!

AusShep · « **Reply #30 on:** March 17, 2014, 04:30:44 pm »

Great that you don't have any resistance mutations to deal with. I bet you have even better numbers very soon.

some_user123 · « **Reply #31 on:** April 17, 2014, 06:28:24 pm »

I had a very good day ... first in a little while.

I've been taking Stribild for 30 days and here are my new numbers:
CD4: 459 up from 252
VL: 90 down from 40,690

Thrush also disappeared about a week ago.

Thanks everyone for posting and helping me get through this

mecch · « **Reply #32 on:** April 17, 2014, 06:57:30 pm »

Good news for spring.

Irish Eyes · « **Reply #33 on:** April 18, 2014, 05:41:39 am »

Well done, great numbers.

Forums Index

Welcome

Author Topic: Just Confirmed with Wester Blot (Read 14211 times)