jimmiejackson

Sorry to hear that your wife has had some problems after starting the medication. Guess my earlier promise of smooth sailing goes out the window then.

The chances are that these side effects are only temporary and will pass.

You made the right choice in not listening to the pharmacy when they said to stop the meds. You mentioned she is getting antihistamines and that she was also on other medication before you went to the hospital.

I know some antihistamines can react with HIV meds. But hopefully she has been gotten some that are tolerable.

For the future you should always look up possible interactions with other medicines she will get, no matter if it is from a fancy bumrungrad specialist or any other doctor. It is almost impossible for a doctor to have the full picture all the time.

I personally use this website to search for possible interactions. It is a very good tool to use. http://www.hiv-druginteractions.org

Please note that if an orange warning comes up when you plot in the drug names it does not mean that she can not take these drugs at all. Only that it needs to be closely monitored or that they should not be taken at the same time as the HIV medicine or that dosage might have to be reduced. Talk with a doctor in this case. Red warning is a no go and a different medicine needs to be found to replace it.

Good luck

Edit to add:

The front page is a bit chaotic. But just click where it says "click here" and you go straight to the interactions "calculator"

You can chose the different HIV medicines by their trade name, generic names and the actual name of each component.

All available HIV medicines should be there.

Thanks for your message and recommendations. I have bookmarked the page! I agree that no Doctor, even the best of the best, is infallible. In my profession I have areas that I'm an expert in, however that certainly doesn't mean that I never make any mistakes, or recommendations that are less than optimal. I definitely appreciate having resources to double check everything!

Check the exclusions in your policy as most major medical and travel Insurance policies currently exclude insurance coverage for HIV. I'm no longer a fan of Bumrungrad Hospital after many years living here. Their prices now are unaffordable for most. The last time I went there I asked for a package annual health checkup. The doctor charged me individually for each test which was much more expensive. I even had a nurse get me the package brochure and I shook it in his face. He did nothing. I filed a fraud complaint with the administration and after a two week investigation they ruled in my favor and returned all my money with an apology. Another time I inquired about a colonoscopy and they insisted that I spend the night for the prep which in my opinion is ludicrous and another way to over bill. I would contact several hospitals and get Doctor recommendations and prices. I would also research what health foods and herbs to consume to boost the immune system. The Insurance company may lull you on and not deny the claim immediately if there is no coverage, but reserve their right to deny in the future after their investigation. This is common in emergencies and after policy holders run up very large bills and get treatment, they deny the claim. For this reason over the years hospitals have taken it on the chin and were forced to double their prices. Best of luck to you both.

Thanks for your advice. Luckily my wife is covered under the Social Security system so her treatment is free. The trips to Bumrungrad are at my insistence and only for Consultation with the specialist. As this by itself is not highly expensive (if we did lab work and got prescriptions there, that would be another matter) it is worth it to me to be able to speak to someone in English who I can ask all the questions I want to and who can advise me on how to navigate the system in the most efficient way. I know that many others aren't so lucky and have to go fully private for treatment, although with the Red Cross service it isn't hugely expensive now.

The insurance I have (a joint policy with myself and my wife on it) was taken out several months before we got the diagnosis and we haven't used to it claim anything yet. As we don't need to do any further declarations and the renewal is guaranteed (as part of their conditions) I fully intend to keep this policy running, especially as they guarantee coverage of a child without a medical declaration required. If something big comes up it gives us the option to go private rather than worry about relying on the Government hospital entirely, so we're lucky to have that option.

Doesn't seem that unusual to me that a hospital wouldn't have an HIV specialist on duty on a Saturday. I doubt most western hospitals would be much different.

I agree, would have been nice if they told my wife that in response to the exact question "is an HIV specialist Doctor working today and available to see me" before she went, but there we are.

At least we have the option to pay out of pocket and see a Specialist at the weekend for quite a reasonable price, I'm thankful for that.

Thanks Sheryl, the information definitely helped.

The result of the consultation with Dr Asda was that he acted as if it isn't a big deal, which is good because that's what I read about the situation too. Definitely helped put my wife at ease about it.

He prescribed some Eucerin cream and a strong antihistamine and said it should be improving within a week. Only need to stop taking the medicine and seek urgent attention if she starts to get ulcers in and around her mouth and eyes, fever or any other severe reaction. To be honest, she looks pretty bad (I'd say similar to how someone looks when they have chicken pox, it's extremely obvious) but hopefully it will go away soon enough.

As far as his recommendations for a good SSF hospital, he said the best choice would probably be Bamras in Nontanburi which has a lot of specialists but is quite far, another would be Rajavithi in Victory Monument which is much closer. The general advice was that the bigger the hospital the better and to check their list of Doctors to see how many specialists work out of there. If it's quite a few they're more likely to have someone who knows what they're doing available more of the time. I won't go into specifics but let's say the feedback on my wife's current SSF hospital wasn't exactly positive.

So right now my wife is knocked out on some strong antihistamines but generally ok and tomorrow we'll see what the situation is with switching hospitals.

Just to clarify, I told her not to stop her HIV mediation (I'd rather she had a rash than came off cold turkey on the advice of a Phramacist who didn't even check for possible interactions) and not to take the antihistamines. I bought some calamine lotion and we've been applying that all day. It might not be ideal but I'm quite sure it won't make things worse and it helps relieve the itching. So now I'm waiting to see what happens tomorrow.

Thought I would post an update as things are going on.

My wife started the medication around 2 weeks ago and mostly it has been fine. Little bit of dizziness at night time (especially when getting up to use the bathroom during the night) and a bit of morning dopiness but otherwise nothing major.

Then on Thursday (two days ago) she started to get a rash in just a few spots on her legs. Not itchy and quite consistent with what I've read is a common side effect from Efavirenz. From some of the pictures I've seen online it isn't severe, but it's pretty noticeable all over her body, I would say 50% coverage in small, mostly light red dots the size of a one baht coin or so (some larger and more pronouced).

Today she woke up and it had started to itch so she called her SSF hospital to see if the appropriate Doctor was there today so she could go and check. They told her he was so she went off to the hospital.

Of course the Doctor wasn't there at all, and won't be until Monday. No surprise there.

She saw another Doctor who said "I don't know much about this, come back Monday".

They then gave her an appointment Monday without asking what time she's actually available and sent her to the pharmacist.

The Phramacist told her to stop taking her HIV medication immediately until she saw the Doctor and gave her some antihistamines (without checking what medication she's already on, which includes antihistamines for ongoing allergies).

Pretty sure this advice is both wrong and dangerous for several reasons.

I asked my wife immediately to call Bumrungrad and make an appointment tomorrow. I'd rather spend the 1300 baht or whatever it is and have a Doctor who knows what they're talking about check her out.

Actually that's not true, I'd rather her assigned hospital would do it properly and free of charge as they are meant to under the SSF. There's a difference between long waiting times and not the most modern facilities, which are to be expected, and dangerous incompetence. Not sure they didn't cross the line today on that one.

But the situation is as it is, I've been here long enough to know how things work and know how take it in my stride. I'm blessed that 1300 baht in Doctor's fees don't mean a huge amount to me in the scheme of things. I just feel so sorry for the people who don't have that luxury and have to blindly follow whatever advice is given to them - I hope one day that isn't the case for them.

So, will report back. Feels good to share!

Was just made aware of this thread by a friend. Who has indeed been in contact with the op on pm's so that is good.

For myself I was diagnosed about 3 years ago when I was living in Thailand. It caused me to resign my job and move back to farangland. Something I know now was a bit of over reacting, but seemed like the right thing to do at the moment.

Just wan't to say to jimmiejackson that you and your wife can take it easy now. It will most probably be smooth sailing towards undetectable viral load and cd4 numbers well within the normal. The side effects of the medicines are not anywhere near what you can read about on sites on line. It is just fear mongering and you should ignore it. From what I know the medicines you get at government hospitals in Thailand works very good. I would guess that with a viral load around 7K as you stated earlier she had she will be undetectable within a month or less.

For myself I went from 110K to undetectable in 20 days. Hopefully has been put on a regime that she only has to take once a day. Even if it's several pills to take it makes it much easier to just have one time to worry about.

I'm on a one pill regime called Stribild, but this is not yet available in Thailand. Probably should be in not too long time. But will be very expensive until a generic comes on the market. But if this becomes available and affordable your wife should consider to change to it. The advantage of this medicine is that it's not so time restricted on when you have to take it. I actually have a window of 6 to 8 hours +/- what ever time I took it the day before.

Would also give a thanks to Sheryl the moderator. It looks like she has managed to keep the bull shit that thaivisa forum is so famous for off this thread.

Don't believe any of the conspiracy theories or alternative medicine mumbo jumbo. HIV is very very real and the only thing you can do to avoid AIDS and eventually an untimely death is to get on the program and take the meds.

Good luck to you and your wife.

Cheers

Thanks for taking the time to give me some advice and tell your story, and thanks to your friend for letting you know. I'm hopefully that things are on track and hearing stories and comments by people who really know the situation helps so much with keeping us upbeat. I was expecting far less when I started this thread, I feel blessed really.

Many posters have helped a huge amount but Sheryl as moderator has to be thanked specially for helping keep this thread (and therefore me) free of distraction or hurt by unnecessary comments. You're an angel and I thank you for it.

I have noted a list of questions to ask and have made a copy of her blood results to bring with us, so I'm coming armed.

Again, thanks for all your help. It's made this situation far easier to deal with as I've been able to get so many answers here along the road so far. This is more valuable than I can express, so thanks for taking the time.

Thanks again for the advice and support since my last post.

After some run around and a bit of bad experience with one of the Doctors (attitude wise), my wife eventually found herself talking to a "Psychologist" (I'm really not sure that's the correct term but my wife insists that's what she introduced herself as) at her assigned SSF hospital who said she works directly for the SSF and is assigned to the hospital to take care of the cases of HIV+ patients.

She was apparently very caring and friendly and prescribed my wife the following and gave her 30 days worth:

Efavirenz 600mg, Tenofovir GPO (Viread) 300mg, Lumivudine 300mg (2x150mg) to be taken at 10pm daily.

All of which were free. She told my wife to come back in a month for a review and to get more medication and that they will do another viral load/CD4 test in 6 months to see how she's responding.

All of this was free and my wife seems comfortable with the "Psychologist" so that's a good thing I guess.

We have an appointment to meet Dr Asda next week. I want to take her blood tests and the medication along and get a second opinion from someone I can talk to directly in English.

A couple of people have said that tests like an EEG (to measure heart performance) are important before starting certain medications, and that blood tests every 1-2 months in the first 6 months are recommended. I'm ok paying out of pocket for blood tests at the Red Cross if my wife can't convince her SSF Hospital to do it, if that's what has to be done. Although I'm sure I could stretch to afford EEGs/Blood Tests at Bumrungrad I'm in a position where I really have to balance cost/effectiveness and if I can get those things free/cheaper elsewhere that is vastly preferable.

Any feedback on the medication? Any advice before going into meet Dr Asda?

Again, I really appreciate anyone taking the time to give me some tips or feedback.

She does not currently have Hepatitis B. She either had it in the past or was immunized, in either event rendering her now immune. Unless it is certain that she was immunized for Hep B, you yourself should also get checked as her prior infection could have been active during time she was with you.

She needs to start ART, obviously. Her immune function is already showing a decline from the virus, though not yet at the point where she would show clinical signs of AIDs.

She is currently infectious, so be careful about always using condoms.

Thanks Sheryl. That helps a lot. I'll get it checked out either way, although she thinks she was immunized (I think I may have been too but no harm in checking).

Should have more info after the hospital visit but from what I've read, she certainly needs to start ART asap. Seems as though we were lucky to have caught it at a point where, while not great numbers-wise, are still in decent enough shape for there to be a positive outlook with the right treatment.

Thanks again to all the posters (both publically and through PM) who have helped so far. We all know strangers on the internet can be unusually cruel and critical but I have found the opposite to be the case in this instance and am very grateful for it.

So today we received the first full blood test results. As promised I will keep posting updates, in the hope of both some input from others as well as to help someone in the future make sense of things quicker if they find themselves in my situation.

I will give approximate readings, so as to retain some semblance of anonymity.

The key points I guess are:

The HIV test came back as "positive".

Anti-HBs says result "positive" and reference "negative", and HBs AG (Rapid) result was negative (0.3 with reference range <1) still not clear what this really means after Googling it but it appears this means she is immune to Hep B and this is something we can forget about? I do hope so...

HIV Viral Load is approx 7500 Copies/ml

Absolute CD4 is approx 370 cells/cu.mm

%CD4 is 24 (reference 26-40)

So that's where we are right now. Waiting for her to go to her SSF hospital asap to see what they recommend and will prescribe and then will take it from there.

DELETED

Nowerdays HIV tests are nearly 100 % diagnostic. If you are HIV positive that does not mean that you have any symptoms. Many people are HIV poistive for 5 to 10 years without any symptoms. That is one of the problems with HIV because these people are sick and can infect others but they don't know about it.

Whereas HIV antibody test are being used for Diagnosis, they should not be. They are a Screening test. They are being used as Diagnosis as there is no "Gold Standard" to diagnose HIIV. Thhat is no independent method to check and to diagnose HIV infection.

Moreover the Positive predictive value ( probability of being HIV+ when you test + ) ( PPV ) When the HIV prevalence rate is 0.1% (That is one person in 1000 are said to have the HIV virus. ) Which is standard through most of the world then the PPV is 20%

Which means that the test will be wrong 80% 0f the time

In the case of Thailand the the HIV prevalence rate is said to be 1%. In which case the PPV is 72% or wrong 30% of the time

How the prevalence rate is obtained is somewhat dubious but that is another topic

http://uhavax.hartford.edu/bugl/treat.htm

As to transmissiblity the Padian Study of 175 HIV-discordant couples [one partner tests positive, one negative] showed Zero transmission over a 10 year period

http://reducetheburden.org/the-padian-study-sex-is-not-the-problem/

http://aje.oxfordjournals.org/content/146/4/350.full.pdf

Also a more recent Australian-based study of gay male couples of opposite HIV status came up with the same result: - that is Zero transmission

http://www.aidsmap.com/No-HIV-transmissions-from-HIV-positive-partner-seen-in-Australian-gay-couples-study/page/2949294/

The viral load test will confirm that she is definitely HIV+ one way or another for 100% certainty, or not?

You are not alone. Three of my best friends are HIV+...all more than 15 years.

A few points, not in order:

All of the advice seems good so far.

Good idea to get a second check. There is also a "deep" test (RNA) which the Red Cross near Lumpini (rear of) are giving for free as part of a trial, although it may be only for high-risk patients. However, the previous point about false positives is quite true. I know of someone who obtained different results in two clinics in the same week.

Yes, it's a fact-- BUPA Green, Gold, Platinum, Diamond or Tin will not pay anything out for HIV OR related illness. I used to be with THI (Thai Health), and they were the same. There are one or two overseas insurers with HUGE premiums who will cover HIV illness if you have NO PRIOR KNOWLEDGE, but they are rarer than hens' teeth.

The "main" problem with the tablets given out by the public hospitals is that they are generic copies of tablets which were in vogue 5 years ago in the US and UK, and are now made for 3rd world countries under licence. This does not make them less effective. The issue is that IF you can afford to pay, and you are living in the right place (or have access), you may need only 1 tablet a day instead of 3 in the morning and 3 at night (which a Thai friend on the Social here gets for free, 4 or 6 tablets a day is standard issue--normally 3+3). One minor problem is that 6 tablets a day may give slight side effects for about one year (including bad dreams, nausea, occasionally diarrhoea etc). However, there are different combinations of 2 or 3 tablets, and your doctor may even juggle them once or twice until he finds the right combination. Dr Asda can advise. One of my friends has a fantastic lady doctor at BNH who is able to prescribe the "latest"drugs, but you will pay her and then pay the pharmacy's price. Another friend gets round this by seeing her only once a year (and getting blood tests at the Red Cross) and THEN buying the new drugs at the row of (mainly chinese) pharmacies opposite Chulalongkorn. The cost is about 2-3,000b for a month of newer brand tablets (I also know someone who flies in from China especially to buy the newer brands from those pharmacies). I think someone above has already mentioned the combo costing 3,000b a month.

However, my friend who takes the standard social security regime DID settle down after having days of nausea for the first year or so. It varies person to person.

Good diet, fresh food, no smoking and NO STRESS (important!) all help the T Cell and Viral Load levels. Your wife needs to avoid minor infections like colds and flu, because her body will not be able to fight them at 100% for a while. Some people take multivitamins or zinc or other things to boost the immune system.

Unfortunately, there is a lot of quackery. In some African countries, you can "cure'' HIV by sleeping with a teenage girl (virgin). There are witch doctors and even politicians who prescribe dettol, soap, herbs, snake blood etc etc. This is all nonsense. Even the latest "western" treatments cannot completely cure the retrovirus HIV because it is so clever that it mutates and changes itself! Trying to cure it is like throwing a dart at a mosquito. But then, there is no cure for the common cold either.

Ramathibodi is not my "own" SS hospital, but I have been for tours, clinical meetings and job interviews there; it has an excellent reputation.

I know quite a lot about this topic. In London during the 80s, some friends and lovers were dying within 6 weeks. The doctors didn't really know exactly what to do, and the drugs, if available, were not "refined", or were much cruder with horrible side-effects. Now, most people live a normal life. One friend of mine aged 61 is 10 times fitter than I am. I'm not HIV, but he has been for 18 years.

Finally, I am so happy that the normal shedloads of bigots have not piped up. Your wife is a decent lady who has suffered a misfortune. Globally, far more heterosexual people than gay people are affected by this problem. It is not a "gay plague" at all. And, thankfully, people who are affected can now live well into their 80s, just like everyone else.

Eddy

These been a few posts like this, and I appreciate all. Thanks for taking the time.

I think the plan right now is to get the blood results back and see what the Red Cross say about them, then take the results to her SS registered hospital and see what treatment plan they advise to set her up with. I will report back with that info and more than likely will go to see Dr Asda to get his take on it. If I need to pay out of pocket for better pills with minimal side effects then that's an option. I'd take less side effects over free if within my means.

The Red Cross told her last week that the SSF will only pay for medication if her CD4 was below 500 (at least that's what I remember she told me, I'm still new to this!) and that if it was above and she still wanted the drugs anyway she would need to pay. From what Sheryl says this is incorrect, which is great news, seems strange that the Red Cross wouldn't know that though.

Prior to 2014 it was indeed MoPH policy to pay for meds only when the CD4 was below a certain threshold but this changed with the 2014 guidelines (and in keeping with international recommendations). AFAIK, Hospitals in the SSF scheme are expected to follow MoPH guidelines. IF it should happen that she gets flak about the meds please get back to me. The SSF Office and some HIV advocacy groups can help. Other TV members have been through this.

The SSF works on a capitation basis, they get a set amount per person enrolled so the hospitals have a financial incentive to try to minimize how much they spend on a given patient and from their point of view, someone with a lifelong need for relatively costly meds and tests is a liability, so don't be surprised if they out up some initial resistance. You are looking at a lifetime recurrent cost so it is well worth the battle to make the system cover this as they should.

Thanks for your detailed help. If she doesn't get what she's meant to treatment wise I'll let you know and I would be grateful for any pointers you might be able to give me. Should know more later this week hopefully.

Thanks for the info to those posters that have provided some, I appreciate the support.

At the moment we haven't told anyone that know us personally and I think we'll keep it that way, it's a private matter after all.

Once we have more info next week I'll post an update.

This is the end of what has been a very tough week for my wife and I and I'm hoping that some of you guys might be able to help me out with some specific advice.

As a result of a routine blood donation for Charity, she was informed this week that her blood had tested positive for HIV.

I went for a test immediately and it came back negative.

I don't think there's much point in these circumstances dragging up the past but just to say that she's explained to me how she likely got it and it's just bad luck on her part.

So now it's time to look at the future.

At the moment we are waiting for the full blood tests to come back with another (from what I understand) deeper HIV test, CD4 count, Viral load, HBsAG, TPHAm Anti HBs, Anti HCV, Creatinine and SGPT (Alt). She got this test through the Red Cross and paid 3000 Baht for it.

When she gets the test back I'm sure we'll have more understanding of where she's at and the appropriate treatment.

She has Bupa insurance through her work that gives her 30 outpatient visits for a max of 1,200 Baht per time per year. She is in the Thai Social Fund and I purchased Cigna International Silver insurance (inpatient only) for us both last September (which would have been after she was infected but before we found out, or that she was reasonably supposed to know she had an infection).

I've read through all kinds of information on here and other forums throughout the week, as has she.

I'm certainly not rich but of course I want to make sure she gets the best treatment and that comes first.

I'm looking for some recommendations from people who know the system here well as to what I can do to maximize the quality of treatment and balance that with cost.

From what I understand, the best way would be to have a consultant at Bumrungrad to advise/prescribe/monitor treatment, to get the blood tests from the Red Cross Anonymous Clinic and to purchase the drugs directly from them after getting a prescription at Bumrungrad?

Does this sound like a good plan of action?

If so, does anyone have any specific recommendations for a Doctor at Bumrungrad and any idea how much each visit will cost and how often we'll likely need a visit?

Any advice on how to deal with payments, insurance or whatever other advice you may deem necessary will be gratefully received.

Thanks guys.

Hi all,

A friend of mine went to renew his extension of stay based on marriage to a Thai wife at Chaengwattana last week, using 400k in the bank as source of funds.

Everything on the list (you can find on one of my previous posts) was needed plus some new requirements that are news to me:

1) they wanted every single page of the bank book copied, not just the page with the name and account number and the entries showing the last 3 months of transactions.

2) they wanted every past visa in the passport, not just the last one (i.e. the one on which the extension of stay is based)

3) they accepted his pictures but the next day called his wife to say "the pictures you used are the same as last year, we need new ones". I think most of us just print off copies of the same pictures but apparently now they need new pictures taken again each year (i.e. same, but different).

Whether these are new rules or just a one off, who can say, but as none of them are very cumbersome it's probably best to come prepared.

From what he says, has already had a full blood panel which would always include fasting glucose.

OP - urine glucose is not an important test (and if you had a physical check-up that usually includes a urinalysis which would show glucose if present, which of course it seldom is). Any check-up package will have included fasting glucose but if you are in doubt easy enough to get one. Hb1ac is not necessary if fasting glucose has always been in normal level.

As mentioned I really think you need to pursue psychological causes. And stop the certizine and nooptropics. No meds but supplements.

Simply tell the therapist what you have said here..that you have a history of depression & so forth, previous substance abuse, and have been troubled for years by severe fatigue and mental fogginess for which a physical cause has not been found and which is getting worse.

That it is getting worse indicates that it is taking more and more effort to keep it all suppressed i.e. it is time for it to come out.

Vipassana meditation which another poster mentioned is also helpful but my instinct from what you describe is that you should get some pyschological therapy first before considering it. Vipassana does knock down the barriers between conscious and unconscious mind but if there is a lot of really troubling stuff piled up in the unconscious it is best to work through that with the support of an empathetic therapist first. You may otherwise be unable to tolerate the Vipassana.

You eat Paleo,, great,, had all the blood work done good.. may want to try and cut down a bit on your exercise routine until it clears ( not eliminate try doing much higher reps at a lower weight) stop craeatine and other suppliments for a while replace with multi vit and MULTI B with some ginko ( can be bought at boots they usually have good sales on vits just gets a months supply) i am presuming you ride a motor bike so i would have to agree that your problem is oxygen intake may be from a sleeping problem may or may be from a reaction to the pollution here,,, i had same symptoms after i lived here for one year, like you did every test.... Try drinking PLENTY of LIQUIDS and check your paleo list for foods that replace your electrolites ( try gatorade for a month once a day with new vits ) AND go to FASCINO pharmacy and get a small can of O2 (oxygen) and inhale it..if you see any imporovement then get a big canister and inhale @40% for 15minutes a day then as needed,,, if the can does not help then i would look at your night breathing, but stay hydrated as these are signs of dehydration and oxygen deprived,,

then as you feel better start re-introducing your workout and vitamin routine if it appears again stop or take less,,, this is what i did it worked for me,,, but it may or may not be your problem

Go to a quality hospital. Depending on their system, go to a doctor and tell him/her your symptoms. Go to the various specialists and all the tests done (in a quality hospital that should take you a couple of days at most). This will tell you what is wrong with you.

The worst thing to do is to ask this forum. No matter how well-meaning and well qualified they are, any doctor would need to have the support of other specialists and actually see you in person. My only comment is that your symptoms are coherent with a number of conditions. Get tested.

Diabetes 2

hepatitus 3

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