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Main Forums => Living With HIV => Topic started by: zephyr on July 22, 2007, 03:57:39 am

Title: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: zephyr on July 22, 2007, 03:57:39 am
To the family,

I've been gone for a while, but I've been well.

I've missed all of you, and thought of everyone constantly.

I have a problem that I need information about. I tested positive for TB last Wednesday, a definite positive, and I'm scared.

Talk to me, please.

My best,

Zephyr
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Ann on July 22, 2007, 07:08:40 am
Hi Zeph,

Sorry to hear about this! I don't know much about TB, but have you read the TB Lesson? (http://www.aidsmeds.com/articles/TB_6730.shtml)

What has your doctor said about it and have they talked treatment?

Hang in there hun!

Hugs,
Ann
xxx
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: sweetasmeli on July 22, 2007, 07:09:35 am
Dear Zephyr
So sorry to hear this latest news. I'm afraid I don't know nada about TB but please know that you're in my thoughts, hon. Positive energy heading your way.

Hugs
Melia :-*
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Cliff on July 22, 2007, 07:32:07 am
Zephyr,

Sorry to hear about your positive TB test result.  Hopefully it will turn out to be inactive.  If not, hopefully you will respond to treatment.

Cliff
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Nadine on July 22, 2007, 07:35:50 am
Sorry to hear about this Zephyr...I know nothing about TB myself, just wanted to chime in and wish you all the best!

(((HUGS)))
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: cjc on July 22, 2007, 07:37:06 am
Hello Zephyr, Sorry to hear about your TB diagnosis. I know very Little about TB but am hoping for the best for you. Hang in there.  Cristy
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: emeraldize on July 22, 2007, 07:44:01 am
I'll ask my friend who had it and was quarantined/treated for a protracted period when she was a kid and is now a lifelong carrier of it in her 60's.

May take half a day to get back with info. Meanwhile, you'll get info and no doubt you've researched this online already.

Most important, you mention nothing about what your doctor or nurse told you---that's assuming you've spoken to one.
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Carolann on July 22, 2007, 09:53:45 am
Hi Zephyr,

I also tested positive for TB and this is not rare. My doc gave me a chest x-ray, and I was fine. Lots of people have been exposed to it. Especially if you have been travelling or work in a human services field, where you are exposed to lots of people. I hope your follow up appointments find nothing to be concerned about.

CA
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: RAB on July 22, 2007, 10:22:29 am
Zeph

I would say welcome back, but obviously not under the current circumstances.  Like others, I don't know much about TB.  Other than what I just read on the link Ann provided.

Sounds like the next step is to find out (assuming you've only had a positive PPD) whether the infection is latent or active. 

I'm sorry you're going through this.  Keep us posted on what you find out please.

RAB
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: aztecan on July 22, 2007, 12:29:49 pm
Hey Zeph,

Gee whiz girlfriend. I am sorry about the TB test coming back at you. Have you had a follow-up chest X-ray or sputum test?

I have several people who had/have TB. One had dispersed TB, meaning it had spread to his lymphatic system. In fact, he had had it so long, there was necrotic (dead) tissue in his lymph glands.

He spent nine months on medication and is now right as rain.

The other is a woman who has it has latent TB. She is on medication Isosomethingorother, which she is required to take for six months.

She is doing well and there is no sign of the bacteria progressing. She will be finished with the treatment in another two months, I think.

The bottom line is, don't get panicky. Just remember that, even if it is active, there are treatments and I know that you are wise enough to finish the medication, not stop after a few months.

Let us know what the follow-up exams showed and remember hon, we are here for you too.

BIG HUGS,

Mark

(Who gets tested annually for TB.)
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: englishgirl on July 22, 2007, 01:14:04 pm
zephyr
like most of us here i dont have any words of knowledge to offer, just thoughts and best wishes to send to you for your swift recovery
let us know how you are getting on
lots of love
xxxx
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: blondbeauty on July 22, 2007, 01:45:52 pm
Dear Zephyr,
Here, in Spain and Portugal we have may cases of TB. I think we are the number one in Europe in TB cases...Not something to be very proud of. But as far as I know TB can be cured. The treatment is long but successful. With your high ccd4 count and your undetectable viral load I don't see any reason why you shouldn't do well.
Planes are one of the best places to catch TB. Maybe I will be the next one.  ;)
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: emeraldize on July 22, 2007, 09:56:28 pm
The succinct reply from my friend with TB, verbatim...

"Go to her doctor right away."
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: anniebc on July 22, 2007, 10:36:18 pm
Hi Zeph

What tests have you had done so far?...if you have only had a skin test that has come back positive this could mean you have a TB infection, more tests would need to be done to determine if you actually have a TB disease...either way you really need to talk to your Doctor, because treatment depends on whether or not you have an active TB disease or if it's only TB infection...sorry to hear this and sorry I can't be of more help to you.

Jan
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: zephyr on July 22, 2007, 11:36:48 pm
Thank you, each one of you, for your kind & supportive responses. Tomorrow I have an appointment with my new HIV doc in Riverside County, CA, late in the afternoon.

Oddly enough, a chest x-ray was taken as part of my intake process three weeks ago, and that showed a 'clear' result. I guess the next step for me is the phlegm test, and I'm unsure about how quickly those results can happen.

I also need to contact my previous physician up north to ask when my last PPD test was; it was relatively recent, I think, and a definite negative. So, I'm wondering out loud whether this 'exposure' happened last year, when I travelled over 24,000 air miles for research trips (and countless planes), or even this year, when I flew to UC Davis in May to enroll in their GUT Study, or, most recently, when I flew to Boston to visit Dr. Walker end of May/beginning of June.

There have been other changes in my health status over these past few months, but I will perhaps share some of that at a later date, when I am not so stressed about this current issue.

As I said to Paul (chefpaul) last week, I guess TB is another item to get educated about, so that I may help someone in the future based on my experience now.

And, I want to thank our Danny (allaboutfosse) for encouraging Zeph to pop back into the Forums, still the best darn place for information and community support on the internet.

Wonderful to hear from several 'old' friends here, as well as 'new' ones...bless you! I promise to update you as this story unfolds.

Hugs,

Zeph
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: emeraldize on July 23, 2007, 07:34:57 am
So, I'm wondering out loud whether this 'exposure' happened last year, when I travelled over 24,000 air miles for research trips (and countless planes), or even this year, when I flew to UC Davis in May to enroll in their GUT Study, or, most recently, when I flew to Boston to visit Dr. Walker end of May/beginning of June.

No matter how many miles you log, where you go, who you see or what the reason, (and there are certainly those among us who fly many more than 24,000 miles for myriad reasons)...you can always wear a mask, that's what I do. You've had the exposure, but you can now protect yourself from other exposures of different sorts by using masks. Just think of it as putting a condom on your face!
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Bizzaretwist on July 23, 2007, 11:07:57 pm
Thinking about you Zephyr... Sorry to hear the news, but it sounds like you're going to be just fine. Keep us posted!

Hugs,
A
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: thirtysomething on July 24, 2007, 12:28:54 am
Hi Zephyr,

Were you tested positive for latent or active TB? I was tested positive for latent TB last year and I took meds for 9 months. Isonazid and Vitamin B6 supplements.

You'll be just fine.

Cheers
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: emeraldize on July 24, 2007, 12:32:52 am
Given that tuberculosis usually requires prolonged close contact for transmission of infection from person to person and your most recent change in lifestyle in these last few months is a new beau---has he been tested recently for TB?
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: carousel on July 24, 2007, 05:07:43 am
I'm sorry to hear about this, I can imagine it must be quite scary.

I don't really know much about it, the only experience was a friend who had a very low CD4 who came through the treatment.

Wishing you all the best.

x
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: gerry on July 24, 2007, 10:45:03 am
Hello Zephyr:

If your chest x-ray was clear 3 weeks ago and you are not having any symptoms of active disease (cough, coughing up blood, weight loss, night sweats, fever), then you likely have latent TB infection.  This means that while you did get infected, you are not infectious to others.  Treatment of latent TB infection with 9 months of isoniazid (INH) is recommended in people with concomitant HIV infection because the risk of reactivating (i.e., turning from latent infection to active disease) at some point later is higher than in someone without HIV (10% per year risk vs. 10% lifetime risk).  If you had a negative skin test as well within the past 2 years, this may mean that you are a recent converter; i.e., the exposure and infection happened fairly recently.  In this situation, INH treatment is also recommended because the risk of reactivation is higher with recent converters than someone who has had it for many years and has not reactivated.  Liver monitoring is needed when one is on INH treatment.  Supplemental vitamin B6 is also recommended with INH to reduce the risk of INH-induced neuropathy.

The CDC has an exhaustive website on TB infection and control, including treatment of Latent TB Infection:

http://www.cdc.gov/tb/pubs/tbfactsheets/treatmentLTBI.htm (http://www.cdc.gov/tb/pubs/tbfactsheets/treatmentLTBI.htm)

Gerry
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: zephyr on July 24, 2007, 11:26:42 am
Good morning, folks,

 So, yes and sadly, I am a carrier of latent TB, time of exposure unknown. For the next 9 months, I will take a 300 mg daily dose of ISONIAZID (eye-soe-NYE-a-zid) with a chaser of Vitamnin B-6 to inhibit the known side affect of peripheral neuropathy.

 I went into my appointment yesterday with the hardcopies of the TB Lessons from this site, and my new doctor and I had a lenghty discussion about my lack of additional symptoms so aptly described in this thread by our good friend Gerry, above, and I felt assured that another blood test or sputum test were unecessary.

 What's got me so rattled in all of this is learning I should have been tested for TB each year. As pro-active as I am about my health, and my health-care, somehow this important piece of information slipped by me. I was under the care of the same HIV physician for 13 years, after all, and when I called their office up in Sacramento yesterday morning, they showed no record of a TB test. Not to mention these past two years of viligant trips to four separate research entities, no mention there, either.

 DAMN!

 Yet another reminder to all of us to be alert, be educated, and request the test if it's not being offered by your medical professional.

  Em, you are correct about the beau getting tested, as well as his son who lives with us. Other friends have suggested that the exposure is due to my living in Southern California since February, and it leads me to investigate the stats on prevelance of TB in this county.

  Again, I truly appreciate everyone chiming in on this, you have all made me feel a lot better. Thanks.

  Right now, I'm going to make a cup of tea and stare at the Lake for a while. My head is spinning, I need to center.

Be well.

Zeph

 



 
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: aztecan on July 24, 2007, 12:43:08 pm
Hey Zeph,

If its any consolation the Zephyr cholla is growing beautifully and becaiming quite the centerpiece. I expect that next year, it will explode into a scarlet cloud of blooms.

Stay centered love,

Mark
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Christine on July 24, 2007, 07:25:35 pm
Hi Zephyr,
Sending you good thoughts and prayers. Stay strong.
Christine
Title: Re: Tested Positive for TB..Confused, scared, and need your help, please.
Post by: Basquo on July 24, 2007, 08:08:48 pm
I'm so sorry to hear about this, Hon!  I know this is eating you up...stare at the lake for as long as you want.

Love,
Creighton