My friend with a very low CD4 in Thailand

[Expat1]

His Story:

-4years........Hospitalized with TB for several weeks.
-3years....... Cleared TB.  Joined military.
-1 year ....... Serious motorcycle accident.  In hospital with fractured skull and lost 8
           teeth.
May1 This year another different friend becomes HIV+ discovered during wife's
          pregnancy.
I Encourage all my friends to get tested for HIV and STDs.
Several Do
One case Syphilis.
Sept 5.  Day 0

This friend is diagnosed HIV+  AND Syphilis postive.  Teiter 1:2.
Goes to local hospital.  Additional test for Syphilis taken. 
Decision made to start Syphilis treatment before HIV ARV treatment.  No Viral Load. No CD4 test.

Day 3 to 18. 
Told to return on October 15.  No ARVs given. No further tests.
Successful treatment. 
3 shots over 2 weeks.

Oct 15 Day 40 given tests for CD4 no Viral Load.  Also given Blood panel.  No Genotype.
Upset that they are running this slowly.  He starts taking a friends ARV meds. TDF/FTC/RPV. 

Day 65
Nov. 9 gets.  Results of CD4 count.  It is 3.  Percentage less than 1 percent.
Referred to another hospital.  He goes to local pharmacy and gets Septrin Tablets to add to the Unsupervised ARVs.

His Universal Health Card from working has expired.   He needs to process documents to get access to hospital.

Gets a packet  of sealed documents.  Told when he gets the results, go to referral hospital. 

Day 68.  I take him to a private Doctor at an NGO.  The private doctor is not happy he has started taking ARVs without supervision.  Doctor continues the TDF/FTC/RPV.

I am a bit pissed off....   If the government hospitals had done their job, he would have already been on his 3rd month of ARVs.  They havent even begun.

Day73
Private Doctor, takes additional tests.  He is Crypto positive.
The Doc feels orders Viral Load tests.  (They come back at 20,000.) A new CD4 it comes back at 34.   And while waiting for genotype tests, puts him on d4t/3TC/ plus Kaletra. 



Concerned the RPV may have caused mutants.  Stops the tenofovir because his Creatinine went from .7 to 1.43 in a month.  eGFR from 132 to 67.
Told to return in 1 week started on 400 mg of fluconazole for Crypto prevention.

Tomorrow he is going to try to work out the government insurance.  He spent an additional $400 for the lab tests. And meds.

He is currently unemployed.  (He was working at a gas station and put diesel into a gas car.)  He was fired.  Not paid his last months wages as it was used to pay the driver of the car for damages.  (No worker protections here.)

Anyway he lives on my sofa (actually spare bedroom). And it trying to get through this...... so am I.

He sees the Private doctor on Thursday.   To determine meds. And next steps.   He has meds till Thursday.   

Except for the very low CD4 he is thus far asymptomatic.   No IRIS yet.  Lung Xray and abdominal ultrasound clear.

[ZachR]

Hey Expat... feeling deeply sorry, actually crying while reading the story.. Why people have to suffer so much..anyway, sadness won't save the world.
Can't give any advice, I got 4month's supply of Triumeq that I would gladly send, but I believe it is illegal and he is on a different regimen. However, you can ask his doctor and if he approves, then I could send them by finding a legal way to do so, yet that wouldn't be a sustainable approach. Hope things get better asap for you and your friends.
Also you can consider some local and international charities and organisations that support HIV+ people.

My sincerest compassion.
Zach

[Expat1]

Thanks for the support Zach.

I already cried me a river.

We can get him HIV meds.  Money for meds is not an issue at present. 

The issue I have is that he was missed by TB hospital, Army, Local Hospital.  Which all had him in the past 4 years.   

Also when finally Dx, got inadequate treatment.  (They still dont know he has started ARV treatment.)  As their last contact was "Get you government health insurance then take this packet of documents to your local sub district hospital.

He goes back to local non government doctor on Thur.  HIs genotype should be ready.  That doctor wants to hand him off to government hospitals. (Probably because of the danger of OIs.) 

Tomorrow he will see about getting government insurance.   If  he has trouble with this, an HIV advocate  has volunteered to walk him through it if he can. 

He runs out of meds on Thur.  Hopefully will get meds from the local ngo doctor. 

If that fails, I take him to Bangkok and Thai Red Cross on Friday or Saturday.

Still, OIs are a big problem that he could face.  Not really sure what would happen if we need to take him to the ER with a fever etc.   

[Expat1]

Update:

He Got government health card so can use sub-district government hosptial for free treatment.  ER, clinics, etc.

Local NGO doctor has decided to remain directing treatment for at least one more month since he has all the tests results, and can change treatment quickly and more efficiently than government hospital especially with with prophylaxis of OIs.   Also he can go get inpatient treatment free if necessary now. Once he gets on a stable regiment and his viral load becomes undetectable, he will transition him to the Government HIV treatment program so that he can get free medicine and care.  I can afford his arvs and oi prevention meds.

He still has no overt symptoms of AIDS. 

He was offered a job, but he is high risk from multiple public contacts  and he might need to be hospitalized in the next few months as his immune system starts activating again.. So doctor talked him out of work at present.  I agree.  So he decided not to work at present.

He can stay in spare room as long as he needs too.  If he becomes sick, I can transport him to the ER at the local hospital where he can now get care.

So I think we got all the supports in place. 

Thanks for the encouragement Zach, Leatherman, Ward.

[ZachR]

I think your friend is the luckiest man on earth to have a friend like you. What you are doing to help your friend has greatly inspired me.

[Mindless]

I think your friend is the luckiest man on earth to have a friend like you. What you are doing to help your friend has greatly inspired me.

Agree, your friend is very lucky to have someone like you on his side.

[harleymc]

I'm concerned about this story. There are indications all through it that ATVs have been taken without medical supervision and possibly as a monotherapy.

Stop playing roulette and get under medical care and be honest about this wild west approach you're all taking with your friend's health.

[Expat1]

He is under a doctors care.  The problem was the government hosptitals were very slow.  Hence went to an NGO and doctor who supplies ARVs to about 2800 people in the province with support of local government. 

He never took monotherapy.  He took Complera when he could not get a script from government hospital.  He was in contact with the NGO.

His genotype came back and they (the doctor lead NGO) replaced  his TDF/FTC/RPV with lopinavir + ritonavir /AZT/3TC.  They continued the Septrin that he started on from pharmacy and added fluconazole because they found him crypto antigen positive. 

I have paid for the lab tests, medicines, and doctor fees for the non government costs. 

Once his Viral load is undetectable and he is out of danger from OIs the NGO will transfer primary care over to a local sub distict hospital. 

They will only do CD4 tests every 6 months and  VL once per year.  There never would have been a crypto antigen test.  And he will only see doctor once a month. 

Currently he sees a doctor every week.  Gets appropriate lab tests weekly, had a genotype (not done routinely in Thai government hospitals) test done.  And gets appropriate ART.   The NGO doctor can admit him to government hospital or he can go to  Emergency room if necessary.  He now has government health card.

Thanks for sharing but your concern is misplaced.

This aint my first rodeo, Sport.

[Expat1]

Maybe go watch Dallas Buyers Club (2013) if you want Wild West HIV stories and some cowboy hats.

[Mindless]

Personally I think you’re a compassionate and cautious man Expat (I’m assuming you’re a man) and you’re doing an amazing job. Anyways, it’s not my intention to offend anybody. I’m simply expressing my personal opinion.

BTW, Dallas Buyers Club is an amazing movie.

[Expat1]

Yes it was a good movie.   

Yes I am a man.

My comments were directed at someone who read the material and failed to comprehend it.  And who seemingly doesn't understand the difference between a public health approach and the individualized therapy that most first world patients expect and usually receive.

[Expat1]

Update: 

Earlier unknown history:
During  his treatment for TB 4 years ago, he was also HIV positive and was treated at a military hospital.  He started with a Viral Load of 1,800,000. and a CD4 of 64.   After the TB cleared his CD4 rapidly improved to 230 in the third month and was at a high of 460 during his enlistment.   (He felt the military hospital cared for him well and as his immune system recovered he enlisted and was a conscript for 2 years.)  At the end of his enlistment he failed to transition into treatment in the Local Government Hospital ARV program. 

He was off treatment for about 2 years

Brings us to the top of the thread.

Then he he showed up at my doorstep. 

So I am no longer bitter with the TB hospital.   Just the problem with transitioning care.

Recently:

Resistance testing came back showing intermediate resistance to NNRTIs.  So they were stopped and a new regiment with lopinavir/ritonavir  and  Descovy was started.  He became very anemic with the prior AZT and it was discovered that he also has beta Thalassemia.

This anemia makes it so he cannot take dapsone, bactrim, or primaquine at this time.  Doctor sees him weekly or biweekly.  He is to report immediately any problems.   I don't know if he is on any other antibiotic. 

So far no crypto has emerged and he continues to take fluconazole.

He seems healthy  no IRIS no OIs  at this point.

The doctor was most concerned with the first 3 months.  He will have a viral load and CD4 count next month.  He continues to get biweekly bloodwork.

When he stabilizes he will enter the Government ARV program again.  (3 to 9 months).

Thanks to all who gave support.

[Mindless]

Good job Expat,

I don’t know where you find the energy to do that. You’re my hero man!

[Expat1]

Update:  He just did a new CD4 count and it is now 65.  Still low but improving.

He is not on Bactrim, he is not able to take it nor dapsone.  If he gets  an OI then the OI will be treated. 

He sees his doctor weekly right now.

He is on Descovy and Keletra.  He takes fluconazole also.

His kidneys have improved to normal with the switch from TDF to TAF.  TAF is not supported in the government National Aids Program.  So will not transition at this time.

Dr.  feels that they would put him on TDF or AZT and an nnrti. 

[daveR]

I am happy to see he is getting the help he needs. I hope he keeps on improving.
Good luck to him

Dave

[Jim Allen]

Update:  He just did a new CD4 count and it is now 65.  Still low but improving.

He is not on Bactrim, he is not able to take it nor dapsone.  If he gets  an OI then the OI will be treated. 

He sees his doctor weekly right now.

He is on Descovy and Keletra.  He takes fluconazole also.

His kidneys have improved to normal with the switch from TDF to TAF.  TAF is not supported in the government National Aids Program.  So will not transition at this time.

Dr.  feels that they would put him on TDF or AZT and an nnrti.

How is your friend doing now? Hopefully, all is still going well.

Best, Jim

[Expat1]

Well, he got a job at a factory packing products, but the factory shut down last week till end of April because of coronavirus. 

Thailand is giving informal workers who are laid off 5000 Baht a month for 3 months. He has been
 Sheltering in place at his girlfriend's house.  He came by yesterday for dinner.

He was supposed to get VL and CD tests last week but the coronavirus issues and the shutdowns have messed up schedules.

Health wise he seems fine.  HE SAW The ID Doc last week and is on Keletra and Descovy, plus flucozanole.

He is very lucky in that he has avoided an OI and there has been no reactivation of the TB.  Also the fluconazole seems to be effective in keeping the crypto  from progressing. 

Doc sees him every 2 weeks because his CD4s are still very low and he is unable to take bactrim or dapsone .

But he seems healthy, next ID doc meeting in about 10 days.

Thanks for asking Jim.

[Jim Allen]

Glad to hear that healthwise he is doing ok, nice update. Shame about losing the job but hopefully when this crisis settles back down he can get back into work again.

[Expat1]

Update. 

A FEW months ago he had issues with the Keletra and missed some doses.  His CD4 dropped back into single digits and his viral load spiked to 80000.

Genotype done, no resistance issues.

Switched to DRV/r, DTR, TAF/FTC. 

At 2 months on new treatment VL undetected, CD 80.  However he was unable to afford the cost of this treatment so switched to genvoya which is 1/3 the cost.  Will review the new meds at 2 months. 

At present Genvoya is not included in the National Aids Program under Universal Healthcare so long term, Genvoya  might also be unsustainable due to costs. It costs 1/3 of his income.  Thailand is getting ready to introduce the T/L/D med but as it has regular TDF not TAF, will probably be unsuitable for him due to kidney issues.

[Expat1]

Uodate:

One year anniversary of beginning ARVs.  He is stable on genvoya, VL undetectable.  CD4 around 100.  Now crypto negative.

Only 1 pill a day.   (He cannot take Bactrim.)  So overall he is doing well.

[daveR]

Glad to hear he is doing ok now. I hope he can adhere to his regime. Nobody in Thailand should have to suffer with this. Although I know the truth is opposite of that. Paper work and bull s#@t. To much of it.

[Expat1]

Update: He continued on Genvoya for several months and switched to Biktarvy.  He was on that under a private doctors supervision and about 6 months ago switched to the government hospital and T/L/D  medicine.  He gets these under the universal health program for 30 baht.

He regained lost weight and seems to be on track now.

[Jim Allen]

Thanks for sharing an update, glad to hear he is on track and has regained some weight.