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Author Topic: No Lymphoma; TB  (Read 3145 times)

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Offline LordBerners

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No Lymphoma; TB
« on: May 15, 2008, 01:15:38 AM »
I am pleased as punch to report that the results of my biospy were that I do not have cancer!  The doctors now feel certain that I have TB, though there has been no confirming test yet.  Anyway I'm delighted to be looking forward to 9 months of anti-biotics rather than years of chemotherapy.  Its also nice that they seem to be narrowing in on a (treatable) reason for my severe weight loss. 

Thanks to those who have wished me well in the past on this issue..
Please, just call me Berners.. or Baron.

Offline anniebc

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Re: No Lymphoma; TB
« Reply #1 on: May 15, 2008, 02:43:10 AM »
I'm glad to hear that they have ruled out cancer..are you going to have a skin test to see if it is TB that is causing you problems, or have they already done one?

The good news of course is TB can be treated successfully even in those of us living with HIV.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Ann

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Re: No Lymphoma; TB
« Reply #2 on: May 15, 2008, 05:07:31 AM »
Berners, as bad news goes, that's pretty good considering the other option. It makes sense too. Good luck with the final diagnosis and treatment. Thanks for the update!

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

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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 BT65

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Re: No Lymphoma; TB
« Reply #3 on: May 15, 2008, 09:28:23 AM »
LB, thanks heavens it's not the lymphoma.  Sorry about you having TB, but as Jan said, it's treatable.  And in a far less invasive fashion, as you know.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline LordBerners

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Re: No Lymphoma; TB
« Reply #4 on: May 15, 2008, 10:27:53 AM »
Thanks all.  anniebc, I'm not sure the 'skin test' for TB we all remember actually exists.  I think that might've been a test for TB antibodies we got as kids.  Anyway the doctors here say it isn't all that easy to diagnose, but they have done so and I have a bag of anti-biotics to start tonight.
Please, just call me Berners.. or Baron.

Offline komnaes

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Re: No Lymphoma; TB
« Reply #5 on: May 15, 2008, 10:37:10 AM »
Hey Lord, hope all goes well. Are you back in Bangkok receiving your treatments?

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline LordBerners

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Re: No Lymphoma; TB
« Reply #6 on: May 15, 2008, 10:44:04 AM »
Hey Lord, hope all goes well. Are you back in Bangkok receiving your treatments?

I am back in old Bangkok, and as much as I'm sick of Thailand, get this - the biopsy which I was told I'd have to bring $15,000 up-front for in the US was 18,000 baht here (about $600).
Please, just call me Berners.. or Baron.

Offline komnaes

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Re: No Lymphoma; TB
« Reply #7 on: May 15, 2008, 10:52:05 AM »
I was there last week for a conference and did check out a few places. I would actually recommend you to start a blog sharing your experiences of medical services in Bangkok for us pozzies. I now know at least 5 people from other Asian countries getting their meds and doing regular checkups there, and I am sure a lot of people are considering that too.

In any case wish you the best of luck and get a negative result of TB too,

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline joemutt

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Re: No Lymphoma; TB
« Reply #8 on: May 15, 2008, 10:57:34 AM »
Lordy, I am glad you have an idea of what it is that caused your weight loss.
(are you sick of Thailand?) Best Wishes.

Offline David_CA

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Re: No Lymphoma; TB
« Reply #9 on: May 15, 2008, 12:28:41 PM »
I remember the old 'skin prick' tests from years ago.  I guess they're not all that accurate, as the TB tests my Dr. 'insists' that I have each year are a small injection.  At any rate, good luck with it.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline John2038

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Re: No Lymphoma; TB
« Reply #10 on: May 15, 2008, 12:48:56 PM »
Sabai die mak mak die !  :)

As said by Ann, bad news for a better news is a good news.

Keep well,
Sawasdee khup

John

Offline Miss Philicia

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Re: No Lymphoma; TB
« Reply #11 on: May 15, 2008, 12:50:24 PM »
Yes, that skin prick test still exists.  It should be routine on a cycle of (don't quote me) something like every 5 years for HIV patients.  I know I've had it done several times over the past 15 years, but it may also have been because I've had several doctor switches.

Still, it's rather odd that they never did one on your when you were diagnosed, or is my experience something regional?
"Iíve slept with enough men to know that Iím not gay"

Offline Dragonette

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Re: No Lymphoma; TB
« Reply #12 on: May 15, 2008, 04:30:03 PM »
Lord, I'm very glad you know what it is and it isn't cancer. Good luck with the treatment.

I've been tested for TB but never with a skin prick. They just did an x-ray and the stethoscope thing, and said I was negative.

Shaun, I want your job...

Modified: just remebered the skin prick, had it when I was 12 at school with all the kids - to decide who needed a vaccine and who didn't.
« Last Edit: May 15, 2008, 04:31:38 PM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline anniebc

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Re: No Lymphoma; TB
« Reply #13 on: May 15, 2008, 05:25:29 PM »
Up until I retired (2003) I was still doing the skin test or Mantoux test, we also followed up with blood tests, x-rays and sputum tests..maybe things have changed a bit since then..but regardless of how you were diagnosed I'm sure you are being well looked after and the treatment will go well.

Take care of you and do as you are told.. ;D

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline next2u

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Re: No Lymphoma; TB
« Reply #14 on: May 15, 2008, 09:42:40 PM »
congrats. do you know when you will take the tb test?

i took one 2 or 3 years ago. that shit was WeiRd. they left some fluid under my skin, it looked like there was a small pea there! anyhow, i had to test in order to sub. funny thing, they gave us 3 months to clear our system in case we smoked pot. haha, gotta love school districts : )

but, back to your situation. congrats and keep us updated.
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline sharkdiver

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Re: No Lymphoma; TB
« Reply #15 on: May 16, 2008, 01:38:46 AM »
I'm glad it didn't turn out to be cancer. Sorry bout the TB,  luckily it is treatable.

Here's to better health

Sharkie

Offline LordBerners

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Re: No Lymphoma; TB
« Reply #16 on: May 16, 2008, 07:59:04 AM »
Thanks to everyone for your kind wishes.  Yes the doctors here all insist that testing for TB is not as simple as many of you are describing, but anyway they feel confident enough of their diagnosis.  That skin-prick test just tested for anti-bodies to TB, not the presense of TB infection.

I've already taken the first dose of antibiotics last night - 6.5 pills, three different kinds, plus vitamin b12 and an anti-cough, also prescribed.  So 8.5 pills every night.  No ill effects.  Thankfully I'm off ARV for at least a month on orders of my hiv doc as he thinks there are conflicts between the meds.

I'm already feeling better! :)
Please, just call me Berners.. or Baron.

Offline littlefire

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Re: No Lymphoma; TB
« Reply #17 on: May 16, 2008, 11:00:50 AM »
Hiya, good luck with the TB treatment! It's a nasty little bugger but if you keep to the treatment regimen and complete the course over the next... uhm... is it 9 months?... you'll be OK.

I heard a talk by Valerie Mizrahi a few days ago (she's a leading tuberculosis researcher in my part of the world) and was stunned that 70% of people in this world carry the bacterium asymptomatically. So please, don't feel marginalised at all, and know that we're here if you want to vent :)

LF

Offline LordBerners

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Re: No Lymphoma; TB
« Reply #18 on: May 19, 2008, 02:09:49 AM »
Just a quick update - I've been on the anti-biotics for a solid few days now and I feel so much better.  Actually I didn't feel that terrible before, but now I feel 'normal'.  The best part is I'm eating lots, so I feel confident this terrible weight loss can be reversed.  Anyway, just wanted to share the good news.
Please, just call me Berners.. or Baron.

Offline Assurbanipal

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Re: No Lymphoma; TB
« Reply #19 on: May 19, 2008, 07:07:12 AM »
Congratulations LB.  It's great you are feeling better.  Sometimes "knowing" what it is wrong, seems like half the battle, doesn't it?
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Peter Staley

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Re: No Lymphoma; TB
« Reply #20 on: May 21, 2008, 12:03:04 PM »
That's great news, Berner.  Glad to hear the appetite is back.

Offline LordBerners

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Re: No Lymphoma; TB
« Reply #21 on: May 27, 2008, 12:20:37 PM »
Update:  I felt basically 100% well the first week of treatment, but the second week a little cough came back - god I hope I don't have the drug-resistant kind.  I did some research and though this is less scary than cancer, it is still surprisingly likely to kill me - if I should happen to have the drug-resistant variety, which is around 20% prevalent in Thailand, my chances are only around 50/50. 

Very scary disease.  I would advise all you positive people NOT to travel to the 'third world' - for example here in Thailand though not a terribly poor country 1/3 of the people are carriers.
Please, just call me Berners.. or Baron.

Offline John2038

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Re: No Lymphoma; TB
« Reply #22 on: May 27, 2008, 03:28:51 PM »
Maybe you are not resistant.

A just this article, if it might help:

http://www.ncbi.nlm.nih.gov/sites/entrez?tmpl=NoSidebarfile&db=PubMed&cmd=Retrieve&list_uids=17726732&dopt=AbstractPlus

Also this article:

A Single Dose of Vitamin D Enhances Immunity to Mycobacteria [tuberculosis]

"The team assigned 192 TB-exposed healthy adults to receive either a single dose of 2.5 milligrams of vitamin D or a placebo. The final analysis evaluated 131 patients: 64 took the vitamin, and 64 took the placebo. The patients were tested for TB at six weeks.
...

"The very high rates of profound vitamin D deficiency that we report in this group of otherwise healthy adults are higher than those documented in the institutionalized elderly (28) and are a cause for grave public health concern, given emerging evidence implicating vitamin D deficiency in the pathogenesis of a wide range of chronic diseases (29). The observation that black African and South Asian ethnicity are risk factors for vitamin D deficiency independently of diet may be explained by the effect of increased skin pigmentation in reducing cutaneous vitamin D synthesis (30); however, this possibility cannot be evaluated in the absence of data on participants' skin pigmentation. Our finding that a single oral dose of 2.5 mg vitamin D corrects profound vitamin D deficiency for at least 6 weeks without causing hypercalcemia underlines the potential use of this formulation as a safe, effective, and cheap ($1.20) public health intervention.
"In conclusion, we have demonstrated that a single oral dose of vitamin D enhances TB contacts' immunity to mycobacteria. Prospective trials to determine the effect of vitamin D supplementation on TB incidence rates should be performed in deficient populations with high rates of latent TB infection." [free full text -- published online ahead of print in April, 2007]

Notes:

    * This study used an appropriate blood test to measure immune response to TB. A trial to prove clinical efficacy would require many more patients.
    * Vitamin D had been used as an early treatment for tuberculosis.
    * The great deficiency of vitamin D that was found in these South African patients suggests a role for supplementation in any case, without waiting years for a definitive trial.


http://ajrccm.atsjournals.org/cgi/content/full/176/2/208

Hopes everything will goes fine for you !

John
« Last Edit: May 27, 2008, 03:41:27 PM by John2038 »

 


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