Taking treatment to own hands

[pasiman]

I got infected after very high risk incident (direct infected blood contact to open wound)and though I had PEP meds, I forgot one morning dose on 5th day because of stress and by the evening had rock hard nodes and sore throat and some temperature, later PCR test was taken and there was detectable virus levels after this incident as well as p24 antigen positive.

  My id doc said it seems clear that infection happened as the amount of virus I was exposed to was so high and symptoms started so quickly after forgotting a dose on the 5th day when so many of the viruses had had time to integrate to the dna of my cells, and the test results  support this.

   My local hospital policy is to see 6 months how the body responds to virus but after reading so many recent reports of very early treatment leading possibly to being able to control the virus after some years without meds as the reservoir of latently infected cells would be small  and even the cured baby who got treatment for 18 months after HIV RNA and DNA was found in the blood, I don't agree with this policy. I don't want to wait 6 months and let the virus spread freely, I think I have a special opportunity here to gain control over this.
 
 I have good income and feel that if anyhow possible, I would want to continue on meds.  I still have PEP meds for some 2 weeks as I got some extra from a friend. 

I am seriously considering if anyhow possible, that I'd travel somewhere where I could buy meds and get treatment without interruption. I am living inside European Union and thinking about going to place like Thailand.

Does anyone here have any information of such possibilities and places where I could find cooperative clinic?

[Ann]

Hi Pasiman, welcome to the forums.

I have to wonder if you've really thought this through. You need the support of your medical team if you're going to start/continue meds.

Has your virus been checked for a drug resistant strain? Having a resistant strain could account for your virus getting around the PEP meds you're taking so quickly after missing only one dose. You will need to have a detectable VL (generally over 1000) in order to find out.

Most people are closely monitored when starting meds and it's not just about the CD4 and VL numbers; kidney, liver and other bodily functions also need to be watched.

You may develop a rash (a very common side-effect) or other side-effects and you will need your doctor to help you deal with them. It's not unheard of for a doctor to wash his or her hands of a patient who is going against their treatment recommendations.

I really think going it on your own is a bad idea. Have you considered printing out some of the relevant articles which support your position and showing them to your doctor? Just because something is standard policy doesn't mean that you necessarily have to follow it to the letter. Getting your doctor on-side would be the way to achieve your goal.

Out of curiosity what meds are you taking aside from Truvada? You should be on at least one other drug from another class of meds if you're going to continue with treatment. Truvada on its own is a common PEP regimen, hence why I'm asking.

I think you should think long and hard before going it on your own. Put your efforts into getting your doctor on-side before you do anything rash that you may later regret.

Ann

[1in1000000]

Hi Pasiman.
I am going to take treatment to my hands with professional support.
 I am also searching for the clinic in Europe where I can buy therapy and receive prescriptions considering my wishes.

I will be glad to share what I found but it is not much yet.

 One option is a Universität Duisburg-Essen clinic in Germany.
You can google and find their contacts.
 There are also a lot of advertisements about treatment in Israel. Most of which are from dealers so you can't contact clinic directly.
I also found dealers of clinic in Switzerland.

I can't write dealer's contacts here because posting commercial informationis against the rules of the forum. But if you interested I can send contacts by pm.

I am going to contact my friend from Germany, she is interpreter and promise to give me direct contacts off the clinic in Dresden.

I also would be grateful for any information on this subject.

Please, share information which you have found.

[mecch]

I got infected after very high risk incident (direct infected blood contact to open wound)and though I had PEP meds, I forgot one morning dose on 5th day because of stress and by the evening had rock hard nodes and sore throat and some temperature, later PCR test was taken and there was detectable virus levels after this incident as well as p24 antigen positive.

  My id doc said it seems clear that infection happened as the amount of virus I was exposed to was so high and symptoms started so quickly after forgotting a dose on the 5th day when so many of the viruses had had time to integrate to the dna of my cells, and the test results  support this.

   My local hospital policy is to see 6 months how the body responds to virus but after reading so many recent reports of very early treatment leading possibly to being able to control the virus after some years without meds as the reservoir of latently infected cells would be small  and even the cured baby who got treatment for 18 months after HIV RNA and DNA was found in the blood, I don't agree with this policy. I don't want to wait 6 months and let the virus spread freely, I think I have a special opportunity here to gain control over this.
 
 I have good income and feel that if anyhow possible, I would want to continue on meds.  I still have PEP meds for some 2 weeks as I got some extra from a friend. 

I am seriously considering if anyhow possible, that I'd travel somewhere where I could buy meds and get treatment without interruption. I am living inside European Union and thinking about going to place like Thailand.

Does anyone here have any information of such possibilities and places where I could find cooperative clinic?

Maybe mine is a dumb question, but have you been definitively diagnosed HIV+?

Assuming you are (first of all, sorry!), are you sure you can afford out of pocket payment for treatment, for the long term?  You had better do some checking AND RIGHT NOW, while you still have your 2 weeks of PEP, to make sure you can, under your insurance in your country,
1) still get tests, covered
2) medical visits, covered,
if you are buying and taking medicine without doctors approval....

Also ask when the state would start covering the medicine, if you start on your own volition.   In a few months?  A year? Never?

[mecch]

Hi Pasiman.
I am going to take treatment to my hands with professional support.
 I am also searching for the clinic in Europe where I can buy therapy and receive prescriptions considering my wishes.

I will be glad to share what I found but it is not much yet.

 One option is a Universität Duisburg-Essen clinic in Germany.
You can google and find their contacts.
 There are also a lot of advertisements about treatment in Israel. Most of which are from dealers so you can't contact clinic directly.
I also found dealers of clinic in Switzerland.

I can't write dealer's contacts here because posting commercial informationis against the rules of the forum. But if you interested I can send contacts by pm.

I am going to contact my friend from Germany, she is interpreter and promise to give me direct contacts off the clinic in Dresden.

I also would be grateful for any information on this subject.

Please, share information which you have found.

"Dealers of clinics" in Switzerland.   Maybe this is "lost in translation".  What are you talking about? And are you confirmed hiv+???

[pasiman]

I don't have yet confirmed positive status. The PEP is Kaletra and Truvada.  I am now actually worried that I didn't only screw up myself getting an infection, but also created a drug resistant strain without treatment options while just not forgetting one morning my pills all could have been avoided.

 I guess you guys are right..I should just relax and trust the doctor and talk about those things...after all I live in a high income country with free medical care for all and they have modern meds here..I was just this morning very anxious after realizing that I had screwed up while being so much afraid of getting infected that I actually did that to myself because of that stress.

[Ann]

pas,

You could also have been infected with a drug-resistant strain in the first place - if you are indeed hiv positive.

You need to stop screwing around and taking matters into your own hands, and go to a knowledgeable doctor to find out where, exactly, you stand. 

You cannot be confirmed as hiv positive until you've had a positive antibody test confirmed with a positive WB test.

As you have not yet been confirmed as hiv positive, please do not post outside this thread again, until you have had your hiv status confirmed one way or the other.

This is not negotiable.

Ann

[newt]

If you took PEP you need to wait 6 months to see if you do indeed have HIV. Sez guidelines...

This is because PEP may lengthen your seroconversion period, so 6 months is a time for a definitive answer to the diagnostic question after PEP (regardless of missing 1 day).

Other evidence eg DNA tests, RNA tests, p24 tests might say you have HIV. Pay attention to these, and indeed symptoms. It's a bit of an unknown.

If you do have HIV, treatment in the initial stages of infection may be good, says a French study, in terms of a) getting a few months off meds after an initial course of ARVS 2) making your immune system respond better to the virus. You really want to do this during/v shortly after serocoversion to manifest the benefit (which is somewhat past now I guess...). No-one can tell you how this finding works if you have taken PEP though.

Nothing (that is, no decent data from studies) says that not taking treatment now will increase your risk of death or illness compared to treatment in 6 months or later (or indeed, at a CD4 count of 500-350 whenever this happens, a time when studies show it definitely has a benefit).

Treatment will reduce your chance of passing on HIV, and this I think is reason enough to go on meds. It's in UK and other guidelines as a reason to start treatment regardless of CD4 count.

Hope this helps

All the best

- matt

[Ann]

If you took PEP you need to wait 6 months to see if you do indeed have HIV. Sez guidelines...

This is because PEP may lengthen your seroconversion period, so 6 months is a time for a definitive answer to the diagnostic question after PEP (regardless of missing 1 day).

Sorry Newt, but that is incorrect. The PEPSE guidelines only recommend testing out to twelve weeks after completion of PEP.

The six month recommendation is an outdated hangover from the CYA policies concerning occupational exposures.

It is recommended that all individuals who receive PEPSE (and those who decline but have had significant risk of exposure to HIV) be re-tested for HIV antibody/antigen at 12 weeks post-exposure or post-completion of PEP if taken (IV, grade C).

source: International Journal of STD & AIDS Volume 22 December 2011; UK guideline for the use of post-exposure prophylaxis for HIV following sexual exposure (2011) page 704

The American guidelines still recommend testing out to six months, but 1) they haven't updated their guidelines since January, 2005 and 2) this is the country whose CDC still insists that kissing is a risk for hiv infection. So they're still driven by paranoia and a wilful ignorance of the basic science.

PS - the UK guidelines are in line with the European guidelines.

[newt]

Thank you for pointing out the 3mths not 6mnths time frame in the 2011 guidelines, change had slipped my mind. - matt

[Ann]

Thank you for pointing out the 3mths not 6mnths time frame in the 2011 guidelines, change had slipped my mind. - matt

You're welcome! It's difficult to keep up with revised guidelines. I know the testing and PEP guidelines better than I know the treatment guidelines (for example), but only because it's what I do every day over in Am I Infuriating Infected.

[pasiman]

Hi it is me again. seems that I had been in psychosis and nobody had been doing anything to me, just my body reacting badly to indoor mold and chemical toxins causing my symptoms and thereby also psychosis, it has happened to me before and I've been banned from here because of that years ago. And as I after years now decided to meet my mother and go to her house where this happened always before, it happened again this time too..but now it went for worse. I really never got any positive pcr or other results, it was just my worried mind making up those stories. But it was true that I fainted while going to sleep and woke up in a paralyzed state because of those allergic reactions in the house, and that's why I had some marks in my lower lip, probably because of hitting myself to the floor etc..and when I woke up I thought the criminals have put some blood there.

I was so horrified that I realized I need a longer course of PEP than my 2 weeks left..and took a flight to Bangkok to buy it as in finland you need to get from the doctor who dont believe me of course. And I went to the most well known Bangkok private hospital and asked for PEP and I made up a story of having had sex previous day with commercial sex worker and condom broke.  He asked if I have good money, and that he gives me best meds, Truvada and Aluvia which is kaletra. And I got those, just wondered why Truvada looked different from my pills and bottle was opened before. I paid a lot of money for them and off I went. I started to take those meds as I was afraid the criminals had microwaved my own meds to neutralize them so that I cannot see..And finally I started to feel better and went again to the hospital just for peace of mind to ask for PCR test..and expained that actually I had much higher risk as criminals injected me. and he said he doesnt think pcr is necessary it wont show anything but as I insisted I want it, he agreed but wanted to take blood tests for muscle and liver and kidney function. And said that I could get Integrase inhibitor Isentress too if I want, but it is more expensive. I said ok, and I went to wait for the lab...

this is when I made the mistake. I didnt make sure how she gets the needle for me. I looked away and dont know what she did..except that she put long latex gloves on before the operation. and I was told to come back after half an hour to pick up the results. Then they had HIV antibody test negative and other blood tests except PCR, very quickly in an hour they got those results.

 I met the doctor and explained how I have realized that I just probably have lots of anxiety and havent really seen anyone inject me and that I have already had PEP in finland and after this he asked a lot about my staying in bangkok and that he would not need to meet me and send the results by email. I was even made to sign a document in a rush just before i left that I request by email.

after some hours I started to feel aching in the area on my left elbow. then it rose to the side of arm, and left armpit. lymph nodes started to feel in my forearm, arm, armpit was very achy, left side of pectoralis muscle area too..by next day it was all around my left side, groins, back of left knee. In the evening I realized I should try my original pills, maybe they actually work better, and now it is sunday afternoon, as that blood was taken on friday evening, and the swelling is much less painful and obvious now but in the morning I realized that in the back of my neck on the right side there is a big lump, a really swollen node. and I have taken my original PEP Truvada and Kaletra pills since some 26 hours of the incident but it seems that it was late since already so many lymph nodes reacting around my body and the back of my neck node had swollen during the night now and is there all the time.

So it seems that either they want to get foreign patients who they believe would pay for their medication and infect for that reason, and as I had said about believing in some criminals injecting, they could do it without suspicion in their opinion..or then if they want to hide the fact they sold me fake pills when in fact they could have stopped the infection from the "criminals", they infected me with a truvada resistant strain to make it seem natural why their meds didnt help..

but all in all, I don't know what to do now. Maybe this real PEP could help still, and prevent the persistent infection in the hidden reservoirs and give my body a chance to fight back..but I have just some 7 days of supply which is really not enough, 28 days is needed. There are even reports of having measurable viral load in the beginning of PEP but then it going away and body killing infected cells and thus preventing infection. But it seems quite reasonable to believe that the doctor's in Finland would not give me another run of PEP after this explanation..just tell me to see what happens and then they start their normal hiv treatment which is just measuring blood levels and starting treatment at cd4 350...so not very nice if I still could prevent this somehow.

And having been in psychosis because of the external reasons, I know nobody believes me. Now having been here some days without the exposure to indoor air where my body and brain inflammation happens always, I see things in a new way, realizing how crazy and sick I was and how this all and my talks took me to this situation where I am. Even in internet it is said about that hospital, "not recommended testing there, I won't go into details but they don't have very good statistics.." and that's where I went in the state of mind in which I was. And spent thousands for some meds, Truvada pills which are different color and without 701 printed on other side..and Isentress pills which are Grey in color..feels like a very sick scam.

[pasiman]

my truvada actually seems to work but the fact that my nausea and headache started and after night while other nodes have gone down, new big ones are at the back of my neck..this seems that the infammation is active in brain. And I read that Truvada doesn't get to CNS so the lymph nodes draining from brain are swelling now. It is very quickly after 2 days, so getting the infection from blood makes it of course progress rapidly.

[Ann]

pasiman,

You've made things up, imagined things, admitted you suffer from psychosis, lied to health care professionals and lied to us. You admit you've been banned from this website in the past for this same behaviour.

You do not need PEP or hiv treatment. You need mental health counselling.

Rather than chasing a virus you do not have, I suggest you seek the help of a mental health professional. We cannot help you with your mental health issues here.

You are once again banned.

Good luck, I hope you get the mental health care you so desperately need.

Ann