My boyfriend has Cytomegalovirus retinitis

I now know that my Thai boyfriend has Cytomegalovirus retinitis (CMV). An opportunistic infection of the eyes. His problem has nothing to do with the cataract operation he had last year.

He's had no sight for two weeks and it may be at least another two weeks before there's any news as to whether his eyes are permanently damaged or if he will regain his sight.

He's on medication every four hours and is frequently on an intravenous drip.

The initial stages of the disease are symptomless so it's impossible to say how long it's been developing. The period a few months ago when his CD4 count was so low seems a likely time for it to have started.

I'm finding it hard to cope with this latest blow that's come as such a shock, it's difficult to imagine how he must be feeling.

He was very low a few days ago but was a little brighter when I spoke to him today. He refuses to believe that he won't recover and was planning for the future as usual.

His simply, understated bravery never ceases to amaze to me. He's been through so much and now he has this to deal with.

In my (rather out of date) experience it used to be the case that at the point of starting treatment further deterioration could be halted, but the damage done could not be improved.

I shall check with my friend who is up to date on research and treatment and send another message later.

Stay positive and strong for him, as you have done now for so long.

Thinking of you both.

OK more up to date information.

Very unusual when someone is on treatment and being monitored to get CMV. Usually only at risk when the CD4 count is below 100. Has he been faithful in taking his anti-retrovirals?

Given that he is so far away from his treatment centre in Bangkok, he really needs to get back there and get a confirmed diagnosis before treatment begins. My understanding that if it is CMV Retinitis (but questionable diagnosis) then the damage done cannot be repaired, treatment can only stop furhter deterioration is still valid.

Take good care of yourself, and him.

Thanks for the information. He is in Bangkok and in a special eye clinic so he's getting good care now. He delayed going though which might have been a critical time. He didn't tell me his eyes were painful when we were in Cambodia and didn't develop serious symptoms until after I returned to the UK. I only have his description to go on for how bad things got before he was put in a taxi and transfered to Bangkok by which time he couldn't see at all.

Good to hear that he is back in Bangkok, hopefully since the staff there know you they are more likely to give you better information.

Stay strong.

[UncleSam]

Can I be so bold as to ask how you have determined in the past 48 hours from 6000 miles away that that your Thai friend's correct diagnosis is Cytomegalovirus retinitis ? I recollect that you have told us previously that his CD4 count was good when you took the trip to Cambodia, which presumably means it was well over 250. It's highly unlikely that he would be suffering from CMV with an adequate CD4 count to ward off opportunistic infections.

I am curious about the source of this diagnosis and how it was communicated to you, in view of your earlier comments. If, in fact, his CD4 count is so dangerously low as to invite a CMV infection, it's imperative that his HIV cocktail be re-evaluated as soon as possible, almost certainly with a resistance test. Do you know what drugs he is currently using for his HIV regimen ?

UncleSam

Why don't you READ what I write. I specifically said "The period a few months ago when his CD4 count was SO LOW seems a likely time for it to have started."

I've no idea why you continually have such trouble understanding simple points and I'll not respond to any more.

You seem determined to write unhelpful and snide comments which I just don't need at the moment.

I've put you on "ignore" so won't have to read your stuff in future if I read any messages as posts like yours make visits to the Forum more trouble than they're worth.

[Smiles]

Khun Jon, I think you do yourself no favours by ignoring UncleSam's rather reasonable-sounding queries. He sounds quite knowledgeable on the subject to me (certainly more so than myself), and his posting tone also sounds as if he meant no snideness.
I really don't see where his post differs all that much from the questions put from TrickyRich.

(Don't get any wrong perceptions there Sammy Boy .... you can be a Hedda boot-licking goof, but not this time, IMHO, hee hee hee hee)

Cheers ....

[Aunty]

I'm very sorry to learn that your bf has CMV, Kun Jon, and my thoughts and prayers are with you both. That is devastating news. I really do worry about these Thai generic antivirals HIV+ folk are put on in Thailand. I just have this feeling that they don't really work very well as they are not potent enough. Most of us are infected with CMV. It is prevalent all around the world, but with a normal healthy immune system it doesn't cause us much problems. So don't for a minute feel guilty or bad because you took your bf to Cambodia for a holiday. This would have happened whether or not he had gone there. He was probably infected with CMV as a kid. Look after yourself, won't you?

From what i understand such a condition normally only occurs in people with advanced HIV - and as such someone who has not been monitored properly by doctors. How exactly does it work in Thailand? I have 2 close friends who have been living with HIV for years now - they see specialised HIV doctors a few times every year to have their CD4 count and viral load tested and monitored. In Europe and the USA each patient is assessed individually and as such each patient, when they need anti-retroviral drugs, may be prescribed specific drugs to suit them. I think many people assume there are 1 or 2 general anti-retroviral drugs and anyone with HIV is simply given these. This is not the correct way to treat people with HIV - there are many types of these drugs available and which ones are prescribed and what dosage depends on the doctor's assessment of the individual as far as I understand.

I tend to agree with the previous poster - Thai doctors seemingly just prescribe as and when and certainly I don't think there is the same level of monitoring of patients the way they do here. Do Thai patients with HIV see specialist HIV doctors? Do Thai doctors understand the multitude of drug combinations available?

The next bit is not a criticism of KJ - if I did not have close friends with HIV I would be unaware of the unique variations of drug therapy each individual patient is assessed for: if this was my boyfriend I would first of all check to see that the doctor SPECIALISES in HIV. Secondly, I would make sure that the person with HIV has blood tests every few months to chart the rise and fall of the CD4 and viral load counts.

It seems almost cruel that most Thai patients with HIV seem to be prescribed some general combination of generic drugs - a combination that may in fact not be the best one for them. It would also seem from reading earlier posts about HIV positive patients in Thailand, that Thai doctors are not aware when is the correct time for the patient to begin regular drug therapy. Also, do the Drs have the ability to screen patients on drug therapy to check that the strain of the HIV virus is not resistant to that drug(s).

Looking at online references, this particular condition is in fact very rare here in the UK and only shows up in patients who have been living with HIV for a long time and were unaware they were infected with the virus. By being monitored regularly as soon as possible after infection, doctors can now control the damaging effects of the virus and ensure that people with HIV do not go on to develop AIDS related symptoms like this dreadful eye virus.

I would be really curious to know if anyone knows what is the current state of play with HIV medicine in Thailand - it would certainly seem lacking in specialised doctors in every major urban centre. KJ surely the best thing for you to do now is search for a specialist HIV doctor in Thailand - someone in this forum must durely know of at least one.

[UncleSam]

I've put you on "ignore" so won't have to read your stuff in future if I read any messages as posts like yours make visits to the Forum more trouble than they're worth.
In that case, you won't be reading what I write here, which could well cost someone his life.

There is something fundamentally wrong when people who are HIV+ and on retroviral drugs develop the kind of opportunistic infections your friend has. It suggests that his basic HIV medication is not working to prevent the replication of the HIV virus. I assume you realize that if his CD4 count was "so low a few months ago", it's not likely to have spiked to some healthy level in 90 days, even with a fundamental change in his drug regimen. There may be nothing right now to prevent him from developing all sorts of disabling and fatal conditions that are associated with full blown AIDS.

You posts don't make clear if he is being treated with the government GPO-Vir or some other drug cocktail. If he is or has received GPO-Vir, and is still having all these problems, it's likely that he has developed resistance to one or more of the pill's three main components. Continuing on a regime to which resistance has developed is useless and potentially very dangerous for finding suitable drugs for his future treatment.

I don't care what you think of me or my comments personally. It strikes me odd, however, that someone would take the time to give a board of strangers status reports on their sick friend's medical condition and then choose to intentionally ignore advice that, if what you say is accurate, could save this man's life.

Your friend is a very sick man who is obviously not in a position to critically evaluate the technical aspects of his treatment. You may be his only lifeline to getting well, because the Thai public health system can be woefully inadequate to deal with HIV treatment. He needs your help to navigate the system and you have to be more than a witness to his plight if you expect him to survive.

[lonelywombat]

UncleSam

Why don't you READ what I write. I specifically said "The period a few months ago when his CD4 count was SO LOW seems a likely time for it to have started."

I've no idea why you continually have such trouble understanding simple points and I'll not respond to any more.

You seem determined to write unhelpful and snide comments which I just don't need at the moment.

I've put you on "ignore" so won't have to read your stuff in future if I read any messages as posts like yours make visits to the Forum more trouble than they're worth.

I think you are a very stupid boy

Read what uncle sam has to stay and think about the knowledge and experience he is bringing to your problem

Are you saying you only want to hear from people that agree with you

If so you are a fool

I must agree with Uncle Sam and, quite frankly and at the risk of sounding callous or uncaring, Why are you sharing this mans personal life with us?Any person who is sick has my greatest sympathy and if possible I would help as far as possible.It just seems to me, Kun Jon that your posts occur with monotonous regularity, I am sure if I was sick or terminally ill I would not want it posted on any forum.The vast majority of readers/members are probably in no position to help or understand what this man is going through and I daresay some readers would probably totally ignore the subject altogether. My heart goes out to this man, yourself and his family and friends.
I do not however feel that this forum is the avenue for discussing such delicate matters.

[Hmmm]

UncleSam, you have 'form' here, having delivered a lazy, rude, unhelpful message to KJ in another thread. Given the circumstances, I think his response to you was restrained.

Since your insensitivity and laziness was pointed out to you, you have responded with more of the same, now couched disingenuously in terms of being 'helpful'. A better man would have apologized for his initial oversight and humbly delivered what useful information he had to offer.

Can I suggest that anyone who has useful, constructive information to offer Khun Jon in this difficult time do so without extraneous comments. Statements / questions along the lines of "Why isn't Thailand like (insert your Western country) ?" are not relevant. Those wishing answers to questions of interest to themselves - but irrelevant to KJ - would do well to start their own thread. Doctors in Thailand who are expert in HIV management are well known to long-time readers of this board and anyone able to use the search facility. Information on HIV treatment regimes in Thailand is similarly readily available.

Having said that, there ARE obviously compassionate readers here with relevant information to offer. Please continue to do so.

[Brad the Impala]

Good post Hmmm

[UncleSam]

Sorry Hmmm, I don't know what you are talking about. The issue here is how to help a young man who is seriously sick. It arises because Khun Jon thinks it's something he wants to share with the board. If you or he want to turn that issue into some ego trip about who said what to whom in another thread, you won't get any help from me. The kid is sick and maybe dying, from what KJ says, and you guys want to start a pissing contest over nothing. Shame on you.

Sorry Hmmm, I don't know what you are talking about. The issue here is how to help a young man who is seriously sick. It arises because Khun Jon thinks it's something he wants to share with the board. If you or he want to turn that issue into some ego trip about who said what to whom in another thread, you won't get any help from me. The kid is sick and maybe dying, from what KJ says, and you guys want to start a pissing contest over nothing. Shame on you.

Hear Hear!

[quote="Hmmm"]Statements / questions along the lines of "Why isn't Thailand like (insert your Western country) ?" are not relevant. Those wishing answers to questions of interest to themselves - but irrelevant to KJ - would do well to start their own thread. Doctors in Thailand who are expert in HIV management are well known to long-time readers of this board and anyone able to use the search facility. Information on HIV treatment regimes in Thailand is similarly readily available.quote]

I accept my posting may have had no direct relevance to KJ's question, but the purpose of this board is surely to share thoughts and observations - I certainly see a lot of the board taken up with personal attacks and bearing zero relevance to the original post . This post has had a few replies but like so many others it was viewed by almost 400 members or guests. That is a lot of men who may or may not have a lot of first hand experience if HIV.

My underlying point was to point out the clear ignorance that exists about HIV - gay men in particular have a responsibility to educate themselves so that if they are in a similar situation to KJ they will know the proper course of action to take. Too many of us think that HIV is the same as AIDS, too many of us think that there is a couple of general tablets that can be taken and HIV will be kept at bay, too many of us do not understand the monitoring needed to ensure an HIV positive person is able to lead a long and fulfilling life.

I have learned that HIV is a lot more complex - it isnt one pill cures all. There isnt even only 1 type of HIV and the virus continues to mutate and old drugs begin to be ineffective, and new combinations of drugs are found. Knowing when you were infected, knowing the strain of the virus are all crucial for drug therapy treatment later on. And constant monitoring of the blood for CD4 and viral loads are all fundamental to ensuring you get the right treatment starting at the right time.

I never intended to say that Thai doctors are useless and farang doctors are best, but clearly there is not the same level of specialisation in each and every Thai hospital - this is understandable for a country like Thailand. But, if there are expert doctors in Thailand then please post a list for the people who cant use the search facility. This would be one of the most invaluable posts anyone could ever post here as the bottom line is it may just mean the next farang with an HIV positive bf may be able to ensure this guy gets the best treatment possible. Remember - almost 400 viewers to this post around such a life and death subject - that is a huge catchment - so any direct information on HIV specialists in Thailand could be really useful for people who find themselves in the soul-destroying situation KJ and his friend are now in

[jimnbkk]

Yarden wrote: "I would be really curious to know if anyone knows what is the current state of play with HIV medicine in Thailand - it would certainly seem lacking in specialised doctors in every major urban centre. KJ surely the best thing for you to do now is search for a specialist HIV doctor in Thailand - someone in this forum must durely know of at least one."

So KJ, Hmmm and Brad decided to bash Uncle Sam, who obviously is extremely knowledgable and was only trying to help.

What a board. Nobody bothered to answer Yarden's comment(s).

Does anybody who lives in Thailand who lurks on this board know how to answer Yarden? As sick as KJ's bf is, and as apparently unwilling KJ is to listen to reasonable suggestions, others of us who are not as familiar with HIV/AIDS treatment, facilities in Thailand, symptoms, etc., etc. perhaps are interested, and could possibly help other boys we encounter that are sick.

I remember another thread going on here where it appears that maybe Yaba-usage symptoms could be similar to some HIV-related symptoms. What's wrong with scribes herein trying to educate us a bit?

I read this board every day. I've learned a lot reading it. I am always appalled by the nastiness of some posters, but have learned to read very fast past those kind of posts. I hope Uncle Sam and Yarden are not discouraged by the negative waves generated by others. I, for one, appreciate their efforts.

Kun Jon,

my prayers, for what they are worth, are with you. Having stayed the course with him so far, I am sure you will be with him for the rest of his journey.

I count myself fortunate in that the Thai friend I mentioned here with HIV several years ago is, somehow, still in good health. If it declines I only hope I can deal with it as well as you.

As for posting about it on this forum, I see nothing wrong with it at all - for those who want to ignore it, they can easily do so. If it helps you in any way, you should continue to do so.

I cannot help but feel that it also serves as a warning for those who tell others on this board that they have "no choice" but to become personally involved with those with HIV or any similar ailment; far from everybody is able to cope with what you are going through, and I admire those who are strong enough to do so.

, if there are expert doctors in Thailand then please post a list for the people who cant use the search facility. This would be one of the most invaluable posts anyone could ever post here as the bottom line is it may just mean the next farang with an HIV positive bf may be able to ensure this guy gets the best treatment possible. Remember - almost 400 viewers to this post around such a life and death subject - that is a huge catchment - so any direct information on HIV specialists in Thailand could be really useful for people who find themselves in the soul-destroying situation KJ and his friend are now in

I don't see this information. Was it, is it in another thread? Please let it be so.

[Hmmm]

I don't see this information. Was it, is it in another thread? Please let it be so.

On the front page of the Resource Forum ...
http://www.sawatdee-gay-thailand.com/fo ... t2228.html (http://www.sawatdee-gay-thailand.com/forum/hiv-aids-thailand-heartt-2000-t2228.html)