HIV new

[lumbus]

Hi eveyone! I was diagnosed positive a month ago. It has to be a routine check, but it was not. Now I'm waiting for my first visit to a clinic next week. Can't wait to have a meds. Only the thought of having "that" inside me makes me sick.

[kentgal]

Hello Lumbus,

Sending you a massive hug.

I'm not sure how your feeling but you must be in shock, I know I was when I was diagnosed 4 years ago. I totally wasn't expecting it.

I am totally good now, I have been on meds for two years now, with no side effects and just one pill a day.

4 years ago i couldn't imagine being in the place I am today, I thought My life was over, it isn't.

Hang on in there buddy, what I'm clumsily trying to say is you will be ok.

Its a virus that can successfully be managed with meds, I honestly am ok, and you will be too.

Very much love to you.

xxxxxxxxxxxxxxxxxxxxx

[lumbus in reply to kentgal]

Hello kentgal,

Thanks for your support!

It was really a shock when lady told me "Ah! Your test is positive. Sorry!" I really felt as if the ground opened and I fell into the abyss. I could not sleep for some days. Now I'm used to the idea. Just a little bit scared how the therapy will go on. Scared of being resistant to the meds. Generally I'm OK. I already found a doctor (I could not wait for a month for my sheduled appointment at the clinic) and spoke with her. I also made some tests and she said the results are very much OK (CD4 about 700 and viral load about 20500). They could be much worser. Though I'm still worried about the therapy and the future. Now I'm waiting to see what doctors at the clinic will say and what meds they will give me. This procedure is painfully long and I can't wait. I live in EU, but not in UK, so things here in my country are different than in UK. From what I read here it seems to me things are happening much more easy in UK.

Massive hug from me too!

[kentgal in reply to lumbus]

Hello again,

You replied so quickly, so I shall reply quickly to you.

Massive hug again to you.....

You sound very calm and in control, is this the case?

I am very impressed by your pro active actions of finding a Dr and your cd4 count is good, well done you!

I say this as shock can sometimes immobilize people.

Me too, when I heard, fell head long into a very deep dark abyss but I had other issues going on from my childhood.

I have H.I.V clinic appointment, once every 4 months now, simples!

You say you think its easier in the uk but you seem to have organised your care very smoothly.

How about emotional support, how are you for that?

[lumbus in reply to kentgal]

Hello kentgal,

I had to do something for myself. I can not rely on only to official medical protocol how med authorities deal with HIV cases.

The emotinal part was very difficult. I told only to 2 friends. One of them spent several days with me, because I could not stay alone and could barеly sleep. Now I got used to the thought that I'm poz and it is not so bad. I'm very down to earth person so I think it is almost impossible for me to fall into deep depression or emotional crisis. I was asked if I need to meet a doc, but I refused. I refused even to take meds for dealing with stress.

[Hidden in reply to lumbus]

Hi there,

Firstly I'm sorry to hear you tested positive, regardless of advances in treatment, it's still unwanted and we all understand that here.

I'm pleased for you that your having things put in place regarding your treatment.

May I ask are you putting together anything regarding emotional : mental support?

Do speak to your advisors about someone to talk too and support groups and networks.

And don't forget that there are plenty of us here that are happy to listen.

Best wishes

[lumbus in reply to Hidden]

Hi Lilchimp,

Thanks for your support. It's really kind!

Regarding emotional support I made some steps. I have a couple of friends that help me. I have a HIV+ friend so he gave me first guidlines what will happen and what to expect. I also contacted a foundation and had a conversation with a member. That lady also explained me many things. After the meeting I felt really relaxed and not so worried. Another frien of mine meets me and speaks with me every day, so it is not so bad.

But generally speaking there not many people I can speak with. In my country the sociaty is different with differen views and attitude. Also there are officially only about 2500 HIV cases nationwide. That's why I search for information and contacts abroad in countries with much greater experience dealing with HIV.

Best wishes!

[Griffon]

It is a bit of a whirlwind when you are first diagnosed . The frequent clinic visits are one thing and getting your head around it is another .

It will all settle down once your treatment is established .

As for " that thing " , it is a virus same as a cold or whatever - you will forget you have it after a while .

[lumbus in reply to Griffon]

Hi Griffon,

You are right. Medical side is one thing, getting used to idea of being infected is another. I think I'll get more calm when I reach undetectible status. Hope that will give me some emotional peace. Until then one way or the other I'll feel at least a little bit worried.

[Griffon in reply to lumbus]

In life shit happens - it is how you deal with it is what counts .

HIV is a virus same as cold and flu are viruses - they are part of life .

[pauldecle Partner ForumLink]

Hi Lumbus,

I am glad you found this community and I hope you will find it both useful and supportive.

Looking at your CD4 and Viral Load counts I would say you have nothing to worry about regarding your HIV. You should live a long and I hope happy life well into your old age.

In addition to this starting your treatment now is the recommended way to go. Here in the UK our newest treatment guidelines recommend starting treatment as soon as you can after diagnosis. The latest clinical trials have shown that we are much more lightly to stay in better overall health is we start treatment sooner rather than later.

Regarding your concerns about side effects of the medication, most of the newer treatments are far more tolerable that they used to be. Treatments now tend to have very few or mild side effects. If you do get any side effects you should find that they will settle down after a few weeks as your body adjusts to the medication. If you do find your treatment is still too much for you after two or three months then talk to your doctor as they should be happy to change your medication.

It is extremely rare for people to be infected by HIV with any resistants to medication, so when you start you should be fine. However it is really important that you take your pills every day as your doctor tells you. This is called adherence, it is when people do not take their meds properly that they can become resistant. I have been living with HIV for nearly 20 years and in all that time I have only become resistant to one medication and that was 19 years ago - and they do not use that drug anymore.

Below is a link to a group in Bulgaria called Health Without Boarders You might find it useful . There is a list of other links on the site so I hope you can find some answers there if we can not help you here.

sites.google.com/site/healt...

The i-Base web site also has a good introduction to treatment guide in Bulgarian which you might find useful, it is from 2011 so a little out of date however you can download a copy from this page i-base.info/bulgarian-intro...

Their latest copy of the same guide in English is here i-base.info/guides/starting

I hope some of this has been of some use. Let us know how thing go and if you need any help or information drop us a line.

All the best,

Paul

[lumbus in reply to pauldecle]

Hi Paul,

Thanks for your support! Everybody I spoke with told me there is nothing to worry about. Hope all you are right. I know very well Health without boarders. They are very supportive to me. I also contacted other foundation so upto now things are running OK. I'm waiting to see how medical part of the problem will start and run.

Best wishes!

[pauldecle Partner ForumLink in reply to lumbus]

Hi Lumbus,

Good to hear from you. I was just going to contact you again to let you know that I have an other web site for you to check out, aidsbg.info

I have also heard back from an old friend who is also from Bulgaria and living with HIV he is quite well connected with the HIV positive community in Bulgaria. I have pasted in his message as he has asked a couple of questions about you so he can guide you to some services in your area.

../

Hi Paul,

Is the person Bulgarian or a Brit living in Bulgaria? I am asking this because I need to link him/her to an English speaking person if so. Also is he/she based here (UK) or there? Finally, if there, where exactly as the services now are decentralised and depending on the person’s residence it will be easier to find something for him where his/her residence is, rather than necessarily having to go to Varna or Sofia. In the meantime, here is a link in Bulgarian where he/she can start (again, in case he/she speaks Bulgarian): aidsbg.info

S.

/..

I am happy to follow through on this just let me know the answers to the questions above.

Let me know how your clinic visit goes and get in touch any time if you have any specific questions about your treatment or anything else.

By the way i-Base have an excellent on line Question & Answer service. All of the Q&A staff are also living with HIV so can often have first hand experience of things that affect us. The link for the Q&A service is i-base.info/qa/ask-a-questi...

All the best for now.

Paul

PS. Lumbus, if you want to contact me directly you can email me at

[e-mail]

[Yankeez in reply to pauldecle]

Hi Paul! I’m a new member in this board. Well, my hubby has came across with hiv+ in his recent blood test in Nov 2017 with cd4 495. He has started his medications in December 2017. Now he is in 3weeks of treatment. Done a blood test recently and found that his liver ALT150 and AST 48. Did anyone of u had similar cases after starting the hiv medications? TQ!

[pauldecle Partner ForumLink in reply to Yankeez]

Dear Yankeez,

I can't give you any advice about the ATL or AST test results but you should always talk to your doctor or another member of your medical team about anything you are unclear about. You could try the Q&A service at i-Base i-base.info/qa/

What I can say is that it is great that your husband started treatment so soon after his diagnoses. All the research has shown that the sooner we start treatment the better it is for our overall health.

It is also worth pointing out that once he has got his viral load down to undetectable, after six months, he will not be able to pass the virus on to anyone else. Lots of studies have shown that after six months of being undetectable there is so little of the HIV virus in our bodies that it cannot be passed on to another person. Over the last year, hundreds of HIV organisations, including the US Centre for Disease Control (CDC), have joined a new campaign to endorse the statement that HIV transmission does not occur when viral load is undetectable on ART. You can read more about this here, i-base.info/htb/32308

I hope this helps.

Kind Regards,

Paul.

[Yankeez in reply to pauldecle]

Thank you so much for your prompt reply, Paul! I’ve noted on what you have mentioned. Hopefully, he is alright after all the side effects happened on him as he is on his 3rd week of medication. Btw, can you tell me what kind of side effects happened on you after you have started the treatment and how long does it takes. TQ!

[pauldecle Partner ForumLink in reply to Yankeez]

Hi Yanleez,

I have been on medication for my HIV for so many years now, it must be 20 years since I first started treatment. It would be unfair to talk about those fist treatments as things have moved on so much in those twenty years.

The last time I changed treatment I really hardly noticed any side effects at all. Funnily enough I will be changing my treatment in a few weeks just to reduce the number of pills I am taking. Now I am getting to be an old man I have to take far more pills for things that are nothing to do with my HIV but more to do with getting old so I am trying to take a smaller number of pills each day.

I spoke to my HIV doctor about the number of pills I am taking each day and we talked through my options together and decided we could change my medication and reduce my HIV treatment to two pills once a day, this is nearly half what I am taking now.

The new meds are newer versions of similar meds I have had before. Both of them have much better, or less, side effects that the "older" version. This is where we are seeing the most progress with newer treatments, they are much less toxic that those medications I first started on all those years ago.

Another improvement is in the dosing, or the amount of medication that is needed to keep the virus under control. Our Doctors can now use far less of some of the drugs to keep us well than they used to think they needed, this means that there is less strain on our bodies and less side effects but still keeping the HIV virus under control.

I hope this helps.

All the best to you and yours,

Kind Regards,

Paul

[Andyadab]

Hang in there it ain't to bad the meds may make u abit drozzy at first but that don't take to long to go away I would take them before I went to sleep so the dizziness wouldn't effect me to badly

[lumbus in reply to Andyadab]

Hi Andyadab!

Do you take your meds at exact hour in the evening? I was told I must take meds at one and same hour every day and I was strongly advised not to choose evening hours, because in my country often people stay at restaurants and clubs and there is great chance to miss the hour for the pills.

[A_P_N in reply to lumbus]

Hi Lumbus,

The answer is both yes and no. It is best to take your meds around the same time every day, but it does not have to be to the very second. Medication from the previous day will still be very much active in your body, so you don't need to overly worry about this. I have a daily alarm set at 9:30pm every night to take my meds. This is not just helpful as a reminder to take them but also to take them at roughly the same time. If I'm out that night, I just take them when I get home. They're next to my bed so it's easy to remember when I go to bed. When you decide to take your meds is completely up to you - it will obviously depend on the medication. If it makes you drowsy, you may want to take them at night. Do what works best for you. If you know that you're generally at home at a certain time of day, set a daily alarm for that time. Then it's just getting into the habit of dropping what you're doing and taking your meds. It takes seconds, so it's not too much of an issue. I've been on my meds for 8 years now and found a rhythm that works for me. Just find the one that works for you.

Hope you're OK.

[George147]

Antiretroviral tablets are just like any other, I have diabetese aswell and those tablets are far worse, Ive been on Meds for 14 years now and it's never bothered me where as the diabetic tablets for 5 years have been terrible , so don't worry just take things in your stride, if you have any concerns speak to your hiv doc let him know how you feel they're there to help you x

[lumbus in reply to George147]

Hi George147,

I hope and believe it will be easy to take the pills. Luckily I don't have any additional health problems so I think the therapy will go smoothly and without complications.

Soon I'll know that.

[Hidden]

Hi again. 6 years no meds here ( with my clinics support ).

Yes new recommendations Sarto start straight away, but if you attend clinic regular and get your counts checked regular, do not feel obligated to start straight away! It's your choice.

I'm not saying don't start meds.

I'm pointing out you have a choice when. It's easy to follow this new guideline in the middle of feeling devastated and frightened.

I'm 6 years in, I get my counts checked regularly and I'm as healthy as anyone on meds. When my counts change I will start.

So all I'm saying is.... Don't panic and rush into it out of fear. Give every option consideration and do what's best for you.

Yes being undetectable is a pacifier, but as long as your careful with any unifected partner and play safe.... It shouldn't be a pressure point to feel you should start immediately.

It's all good having less HIV replications swimming around in your blood, but then you have medication in its place everyday for the rest of your life.

Agsin ... I stress I do not advocate no medication What I'm saying is to not feel you have to rush decisions whilst in a fragile and emotional state or shock

Get completely clued up about YOUR HIV first

Take care

[JB28 in reply to Hidden]

Wow this is awesome advice, I have not heard it, all I hear start meds strate away an pressure ... ect...

[pauldecle Partner ForumLink in reply to Hidden]

Hi Lilchimp,

I just wanted to say that this is a really well balanced and important reply.

I could not agree with you more about the importance of highlighting that every step in this journey we are all taking MUST be our own choice. We should make well informed choices and know about our HIV and the treatments available.

I just wanted to add (and I am sure you will be aware of this) the option to start treatment sooner rather than later is not just about lowering the risk of transmitting the virus. The START study concluded that starting treatment early more than halved the risk of a serious illness.

For anyone who would like to know more about the START Study there is an easy to read introduction on the i-Base web site at i-base.info/start/

Once again, like you, I want to stress starting treatment, or any other decision regarding our HIV, is a big step and a huge commitment and should be our own choice.

I know that I get excellent treatment (here in the UK) because I know about my HIV and the treatments available along with the pros and cons of each medication. Each decision I make is in partnership with my HIV doctor who I have built a strong and trusting relationship with over the last ten years.

Kind Regards,

Paul.

[Hidden in reply to pauldecle]

I thank you for understanding my response

[Malkie]

I joke about my hiv now when a mosquito bits me I laugh and say you will die well before I will f---img idiot so don't worry my friend you will be 100% fine I am

[yesm]

I was diagnosed with HIV in 2003 when I discovered I was pregnant with my daughter. I can relate to how that makes you feel. It was extremely devastating. Back then I was alarmed my daughter would of contracted the disease. Miraculously my daughter did not contract the illness and I was subsequently healed in 2004.

Now my boyfriend has the illness. He was at the lowest point in his life when he learnt he was diagnosed. It was difficult time for both of us. I shared the scars and the pain he encountered and stood in his corner until he was strong enough to heal from the brokenness.

It's not the end of the road because you have HIV. There are medications and PREP available for HIV partners. It's best to surround yourself with positive people and research all the information you need to keep updated. I also suggest counseling to help you stay emotionally and mentally strong.

[lumbus in reply to yesm]

Hi yesm!

Thanks for your support. I read your story and again and again I'm amazed by nature. How can this happen? Mother and child have such strong biological connection during pregnancy and stil child is saved from the infection! I know for another case like yours here in my country. I don't know if I feel broken from the news about the infection. But I really feel determined to put it uner control and keep it like that till my very last day on this planet. The only thing I pray for is to prevent future complications or other ilnesses. I hope to keep in touch with you and others and share information in order to be up to date.

Best wishes!

[George147]

Many Meds don't have the side effects we are told about, I started on Meds 13 years ago , unfortunately it was over a year before I discovered it was having a side effect but the doctor quickly changed that one pill and I've bee fine ever since been undetectable for over a decade now so please don't worry unnecessarily

[lumbus in reply to George147]

What was the side effect you discovered?

[George147]

Bad dreams but like most dreams you forget what you were dreaming about it's was a good few years after I'd changed medication that I remembered the bad dream when I told the doctor he had a good laugh with me as what I was dream was impossible

[lumbus]

Hi George147

I have my meds for 5 days now. I can not discover any side effects. Absolutely none. The information sheets of the meds are like a horror story book, but yet nothing happened. Now I hope that the meds work and I'll have good test results at the end of the month.

[A_P_N in reply to lumbus]

Hi Lumbus,

Many meds these days have minimal side effects, if any. I didn't experience any when I started taking my meds 8 years ago. As for the medication insert, legally that have to put in the information about any possible side effects. If you've not experienced side effects yet, there's a good chance you won't. Excellent! Depending on your CD4 and VL when you were diagnosed, it may take a few months to become undetectable. But that differs from person to person. It took me 4 months, but the rules for taking the medication were different then. CD4 had to be below 350 and VL had to be above 100,000. Now the advice is different, so you'll probably see results a lot quicker. I hope you're well and that you're coping with everything. It's an exceptionally stressful time for you. Just take it one day at a time.

xx

[lumbus]

Hello!

I would like to share with you the good news that it took me only 3 weeks time to get from viral load 1120 to undetected of approx. 40 copies/ml. thanks to the medications. So everyone who still wonders whether to start your therapy, think again!

[sumaleng]

What have u taken i want to lessen my viral load