Tuberculosis...Advice

[bufguy]

I went to my Doctor for routine checkup this morning and was floored when he told me I tested positive for TB. The test was a blood test. My previous skin tests tests in 2008 and 2009 were both negative.
I was diagnosed HIV+ in 2008 with a CD4 of 511 and Vl of 47,500. I started meds right away and have been undetectable ever since. My current CD4 is 924. I am extremely healthy, fit ( 175 lbs, 6'-0". cholesterol 158 and exercize 5-6 days per week) I have no symptoms.
Looks like I will go on meds to clear the infection.
I'm really concerned as I've been so healthy and don't want to start meds that may cause side effects.

Anyone else have a similar experience?

[emeraldize]

Indirectly, yes. Someone quite close to me, HIV positive and positive for latent TB took isoniazid for nine months. No problems and no collision with the HIV meds. The meds were provided at no charge by the health department and were sent by mail when a call for a refill was made making it all quite convenient.

[aztecan]

What Em said.

There is a lot more TB going around than people realize.

From my experience, the side effects of TB treatment is minimal, but completing the treatment is crucial.

The last thing you need is a resistant strain of TB along with HIV and that can happen easily if you don't keep up with the treatment.

In many places, including here in New Mexico, TB treatment is DOT (direct observational therapy). That means you may have to show up to have someone watch you take the pill, or they sometimes will come to you.

You will be fine. The course of treatment is usually six to nine months in most cases, and then you will be done with it.

HUGS,

Mark

[Rev. Moon]

Buf, as Em and Mark have told you, don't stress too much.  The current treatment for latent TB is not as bad as you may fear.

Your doc may order an x-ray of your lungs to confirm that this is not an active infection. 

Someone in my family nearly died from TB back in '99.  Fortunately, even though it was very scary, things turned out very well for us. 

After I tested positive for HIV my ID doc recommended that I tested for TB as well (given my previous exposure and my yearly trips to rural South Africa).  Even though I had taken some pills back in '99, I was not surprised when it came back reactive.  The x-ray however was clear.  I started taking Isoniazid (INH) every night along with the AIDS meds.  It was no big deal after a couple of days --to be honest I don't recall any side effects whatsoever this time around.

You will need to take INH along with vitamin B6 (to prevent peripheral neuropathy and CNS effects).  Just make sure that once you start treatment you remain adherent.  From the first-hand experience that we had in my family I will tell you that this bacteria is no fun.

Best of luck and health.  You'll see it's going to be fine.

[bufguy]

Thanks for all the responses. Just so damn frustrated because I"m so concious of taking care of myself.
Adherence is not even an issue...I've been on atripla for 3 years and have not missed one dose.
I was shocked to hear I was infected.
I had a chest xray and willl have the results by tuesday...I'm sure its latent...My CD4 is high...heck I run 5 miles a day!
I googled the medication....from the 1950's!...hope for no side effects.

[emeraldize]

Given all that's known and that your immune system is compromised by HIV, the sooner you move on this the better. Great that you're good with compliance. Your local health department probably has a nifty little system set up for handling med distribution. Our health department does not require observation of ingestion.

I'm sure this was disconcerting as hell to you especially having had recent negative tests. It shows how TB's out there and unless you're willing to wear a mask (respirator), there's a chance of picking it up.

[Theyer]

The ward I occasionally live on has a section for TB in all its many glories, its always full and no,s have been steadily rising in London. I have been medically contacted 5 times Telling me I have been in contact with a TB infected person and asking me to go for tests . Like all who have posted said if you have no symptoms the treatment is fine.

[bufguy]

Given all that's known and that your immune system is compromised by HIV, the sooner you move on this the better. Great that you're good with compliance. Your local health department probably has a nifty little system set up for handling med distribution. Our health department does not require observation of ingestion. [/i

Is my imune system actually compromised...my CD4 was never below 511 and now its up to 924...as high as any HIV- person.
There must be many people out there that are exposed that are never tested..I was tested just because I am poz.

Anyway the antibiotic is relatively cheap...at least compared to Atripla and will just be prescribed and managed by my ID doctor. My insurance pays for it

[Rev. Moon]

Exposure to TB (and/or its latent presence) can happen to anyone, regardless of HIV status.  Now, living with HIV and TB on the other hand can be dangerous (especially if you were to have a seriously compromised immune system, or if the TB is to become active), that's one reason why your doc wants you to start the INH.  It should be just $10 or less depending on your health insurance.  

[emeraldize]

Given all that's known and that your immune system is compromised by HIV, the sooner you move on this the better. Great that you're good with compliance. Your local health department probably has a nifty little system set up for handling med distribution. Our health department does not require observation of ingestion. [/i

Is my imune system actually compromised...my CD4 was never below 511 and now its up to 924...as high as any HIV- person.
There must be many people out there that are exposed that are never tested..I was tested just because I am poz.

Anyway the antibiotic is relatively cheap...at least compared to Atripla and will just be prescribed and managed by my ID doctor. My insurance pays for it

Hi Buf - I didn't mean to cause you concern by stating that your immune system is compromised by HIV -- I, categorically, consider anyone with HIV to have a compromised immune system. Therefore, I tend to go for swifter action on anything that requires medical attention to stave off something more serious. You're right, there are lots of people who aren't tested. As Theyer indicated, London's rates are rising. It's a problem in many areas of the world.  Some people have to be tested annually, especially those in the health care professions. Is there a reason you wouldn't consider going to the health department to get your meds? I'm assuming you are in the US. Just curious.

[bufguy]

Not to be argumentative, just curious...with a CD4 of 924...equal to HIV- people and an undetectable viral load is my immune system compromised?
My co pay is very little...$10 per prescription and I would prefer my ID doc to manage my care just as he is doing with my HIV. No need to bring another party in...as in the health department.

[Rev. Moon]

Not to be argumentative, just curious...with a CD4 of 924...equal to HIV- people and an undetectable viral load is my immune system compromised?

Buf, you are fine.  You're numbers are actually great.  

Latent TB is something that you just need to treat, regardless of HIV status.  The person in my family who had active TB is HIV-.  As others have told you, latent cases of this condition may be more common than expected.

As far as the meds are concerned, you can definitely get your ID doc to prescribe them and then have them auto-refilled by your local pharmacy.  You wouldn't have to get the health department in the mix if it isn't necessary.

[bufguy]

Thanks everyone!

[BT65]

Where I live a person has to go to the health department to get and take the meds.  Like Mark said, if the person doesn't show up, the law goes to get them. 

Good that you're compliant.  Good luck with the treatment.

[Since2005]

I was diagnosed HIV+ in 2008 with a CD4 of 511 and Vl of 47,500. I started meds right away

To me, that's too early to start meds, especially given your VL count. I know, I have been seeking medical help just recently, but I have been educating myself about HIV for about 7 years now. So, given your med stat, I am not sure why your doc even suggested starting meds that early. But, I don't want to derail your threads on this especially you have already made the decision, but I wanted to give my opinion to others who have been recently diagnosed, and have similar stat as you, they can probably wait. And, I believe you only had ONE test result so far since you haven't mentioned any other test results. I believe, one would need to wait 2/3-test result on Meds before you could get a clear pic of your CD4 and VL count. You could have very well been a LTNP/LTSP given how well you responded to the meds. Now, you would never know if you could have waited few more years without meds. If you weren’t on meds, now you didn’t even have to worry about the side effects of taking TB Vaccine/meds.  I wanted to make sure I am clear here by saying I am not against taking meds but if one can wait (knowing a clear picture of the med stat), then he/she should (personal opinion).

Not to be argumentative, just curious...with a CD4 of 924...equal to HIV- people and an undetectable viral load is my immune system compromised?

I agree with EM as she was saying that you are compromised regardless of your VL count, you are not cured. Your immune is compromised with the HIV virus.

You are also healthy as a charm. You run 5 miles a day, work out, have excellent CD4 count and UD viral load, my guess and hope is that you would be dealing with the TB meds just fine. This is something you would have to deal with ( by law you do) regardless of any side effects may or may not occur. Good news is you are healthy now and I wish you the best while you are dealing with the TB.

[Rev. Moon]

Edit: duplicate entry for some reason.

[Rev. Moon]

To me, that's too early to start meds, especially given your VL count. I know, I have been seeking medical help just recently, but I have been educating myself about HIV for about 7 years now. So, given your med stat, I am not sure why your doc even suggested starting meds that early. But, I don't want to derail your threads on this especially you have already made the decision, but I wanted to give my opinion to others who have been recently diagnosed, and have similar stat as you, they can probably wait. And, I believe you only had ONE test result so far since you haven't mentioned any other test results. I believe, one would need to wait 2/3-test result on Meds before you could get a clear pic of your CD4 and VL count. You could have very well been a LTNP/LTSP given how well you responded to the meds. Now, you would never know if you could have waited few more years without meds. If you weren’t on meds, now you didn’t even have to worry about the side effects of taking TB Vaccine/meds.  I wanted to make sure I am clear here by saying I am not against taking meds but if one can wait (knowing a clear picture of the med stat), then he/she should (personal opinion).

There was nothing wrong with Buf's decision to start AIDS meds shortly after his diagnosis.  I did the same thing, and to quote a certain Ms. Ciccone: absolutely no regrets.  Personal choice and (with my 42% CD4%, immediately UD VL, minimal side effects, and consistently decent absolute values of CD4) I am quite happy with how things have been.  The OP's numbers are great and he needs to be commended for this and for his healthy lifestyle.

This thread is about Buf's concerns regarding TB meds.  Let us not turn it into an unnecessary debate on his decision to start HIV treatment as early as he did.  There is no need to stress him more than he obviously is at this moment.

[Since2005]

The OP's numbers are great and he needs to be commended for this and for his healthy lifestyle.

I did! Here..

You are also healthy as a charm. You run 5 miles a day, work out, have excellent CD4 count and UD viral load, my guess and hope is that you would be dealing with the TB meds just fine. Good news is you are healthy now and I wish you the best while you are dealing with the TB.

you conveniently omitted @OP comment that I made!

I wanted to talk about starting meds FOR OTHERS with stable numbers who are reading into it! Having said that, you (Rev) are right, I do not want to derail this thread anymore (Sorry buf). Once again, I wish you the best with your TB diagnosis.

[bufguy]

No offense taken by what any one is saying here...Lively discussion by informed, concerned people...As to my decision to start HIV Meds I discussed this with my Doctor, an HIV researcher with the Erie County Medical Center and University at Buffalo. He like more and more Doctors are suggesting starting meds right away to diminish any inflammation the HIV virus may cause. Dr Gallant from Johns Hopkins suggests all his patients start immediately also as the meds are safer, easier to take and less side effects. Plus I felt like I was doing someting, not sitting and waiting.
I have NO regrets and would not only make the same decision but based on my experience encourage others to the same.

As for the health department forcinng me and observing me taking meds, that is not the law in NYS...thank God...We still have rights, plus my infection is considered latent not active...no public health threat.

[aztecan]

One of the reasons the health department is involved in most states is TB is a reportable illness, like HIV, typhoid, scarlet fever, rubella, Ebola, and others. Small pox was reportable before it was eradicated.

Also, we have numerous Native American reservations here. Until 1975, TB was the leading cause of death on the Navajo Nation, and in some other areas as well.

I have known a half-dozen people with TB, both latent and active. I have to be checked annually.

Ah, life in the hinterland.

HUGS,

Mark

[lost_boy]

Hey Bufguy,

It it's any consolation, I may be joining you on the TB fun bus. My CD4 numbers are resolutely sticking low, so I'm going for a TB blood test tomorrow to see if that is the underlying cause (or it's possible my immune system is being slow to respond well). Bit upset, as as I had a lung x-ray not long ago which showed no results, so to develop it now is very disappointing. But, looking through the historic threads, it ultimately means just another pill to take, hopefully without too many side effects in the majority of cases, and then you can have the peace of mind that the TB has been controlled.

At least, I'm hoping it's that straightforward. Am very much preparing for the worst...!

LB

[bufguy]

I know this response is 19 months after the thread was started, but I found out I never had TB. Since my labs were always so good my doc never hurried me to make a decision about treating the latent TB. A clinical trial was offered to test the interaction of Atripla with TB meds and I volunteered. When they tested me it came back negative.
My tests had always been using the quantaferon gold test, not the PPD skin test...Anyway, no worries