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Author Topic: Tested Positive for TB..Confused, scared, and need your help, please.  (Read 4357 times)

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Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
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
"It is character that communicates most eloquently."

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Hi Zeph,

Sorry to hear about this! I don't know much about TB, but have you read the TB Lesson?

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

Hang in there hun!

Hugs,
Ann
xxx
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline sweetasmeli

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  • Posts: 1,052
  • Love what you are...
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 :-*
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Cliff

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  • Posts: 2,645
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

Offline Nadine

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  • Posts: 1,253
  • Member since: August 2005
Sorry to hear about this Zephyr...I know nothing about TB myself, just wanted to chime in and wish you all the best!

(((HUGS)))

Offline cjc

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  • Posts: 1,011
  • Sweet Girl
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

Offline emeraldize

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  • Posts: 3,334
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.

Offline Carolann

  • Member
  • Posts: 233
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

Offline RAB

  • Member
  • Posts: 1,895
  • Joined March 2003
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

Offline aztecan

  • Member
  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
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.)
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline englishgirl

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  • ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #10 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
ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN:
http://campaigning.tht.org.uk/cms/cmsloader?WfJVLp&view=11,301,1385,0,-html

http://forums.poz.com/index.php?topic=17352.0


"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline blondbeauty

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  • Posts: 1,784
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #11 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.  ;)
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline emeraldize

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  • Posts: 3,334
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #12 on: July 22, 2007, 09:56:28 PM »
The succinct reply from my friend with TB, verbatim...

"Go to her doctor right away."

Offline anniebc

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  • Posts: 5,935
  • AM member since 2003
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #13 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
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline zephyr

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  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #14 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
"It is character that communicates most eloquently."

Offline emeraldize

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  • Posts: 3,334
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #15 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!

Offline Bizzaretwist

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  • Posts: 14
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #16 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
Previously known as: PozinMass
Diagnosed: 8/2003
CD4 = 500-800
CD4% = 32-38  VL=<48
Not on meds yet..

Offline thirtysomething

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Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #17 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

Offline emeraldize

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  • Posts: 3,334
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #18 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?

Offline carousel

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Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #19 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

Offline gerry

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  • Joined AM Feb 2003
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #20 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

Gerry

Offline zephyr

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    • Zephyr L.T.N.P. Foundation, Inc.
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #21 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

 



 
"It is character that communicates most eloquently."

Offline aztecan

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  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #22 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
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Christine

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Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #23 on: July 24, 2007, 07:25:35 PM »
Hi Zephyr,
Sending you good thoughts and prayers. Stay strong.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Basquo

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Re: Tested Positive for TB..Confused, scared, and need your help, please.
« Reply #24 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

 


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