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Old 07-21-2010, 03:56 PM   #1
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ashandtherev HB User
Unhappy scrofula/lymphatic TB

Hello all! I am 25 years old and have been battling a ton of health issues the past 5 or so years. In 2006 i moved to South Africa to work at an orphanage for HIV+ children. I was there for just over 2 years and spent every day with the kids. Quite a few of the children had xtremely drug resistant tuberculosis. I started having TB-like symptoms. For about 6 months I had a persistent cough and was coughing up blood. I also lost about 30 lbs (maybe more) in that time. I though you had to be quite immuno-compromised in order for TB to affect you. I went and got a TB test done and it came back negative. Therefore I just carried on with life and the symptoms eventually went away. (except for extreme fatique which has stayed till now) I eventually moved back home (USA) and started having a ton of gastrointestinal issues and also reproductive issues. Then, the past 2 or 3 years i've been having a really bad pain in my jaw/neck, which I thought was a wisdom tooth. So about a month ago I finally went to the dentist and on the xray they noticed something abnormal and asked me to go to a maxillo-facial surgeon. It turns out There was a large (about 13mm) stone in my submandibular salivary gland, as a result of a chronic infection. They said it looked as if the gland was dying and that I needed to have it removed. I raised money through my church to get the surgery (i am uninsured) and on the day of they did a CT and saw that there was a bunch of abnormalities in my cervical lymph nodes. and they asked to remove them. So they removed the salivary gland (almost complete necrosis) and 4 lymph nodes. I was automatically thinking a lymphoma or something, but when the pathology came back it was extensive calcification of the lymph tissue, and granulatomous lesions in my gland and nodes. They asked if I had been exposed to TB and i said yes quite alot. I am now going to TB clinic at the local health department and they did xrays and looks like there is a bunch of scarring on my upper lobes. They also did 2 ppds and I'm still testing negative for TB. But they are saying the damage internally looks like damage from old lymphatic TB. But why am i testing negative for TB? The biopsy was negative for acid fast and for fungal infection...(so if it is latent in my body wouldn't acid fast show up positive) Does anyone know of any other causes of "scrofula" or something like it? Also they said they are very concerned because usually if people have that amount of damage in their lymphatics, the person is very young or very old, or is immunosuppressed. I am only 25 now? and my hiv is testing-. Are there any other hidden auto immune diseases or something that could be causing this?? Again, I don't have insurance and I feel the clinic is giving me the run around. The surgeon said i really shouldn't let this go untreated. I dont have tons of money to go from specialist to specialist....so does anyone have any expertise in this area?? pleease help


with much anticipation,

Ashley

 
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Old 07-21-2010, 05:21 PM   #2
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harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: scrofula/lymphatic TB

Hi Ashley!

You've had quite an ordeal this past year eh? So yes, sounds like you have TB lymphadenitis, though technically since your skin didn't bust open and start draining pus, it's technically NOT scrofula.

TB is a very interesting infection because it can infect almost every single organ in the body. The only place it has never been documented to infect is dental pulp. The problem with TB even nowadays is that we don't have the best diagnostic tests to identify it. Much of the time we are relying on culture based methods (i.e. when you actually have to go to the site of the infection and get tissue or phlegm) though there are a few new tests we can do on tissue to make the diagnosis a bit more rapidly (i.e. PCR).

The worst possible test to do to try to diagnose TB is the TB skin test. It is OFTEN negative in active tuberculosis and if someone has symptoms which are suggestive, you should NEVER rely on a negative TB skin test. The fact you had granulomatous inflammation in the lymph node in the context of a lot of exposure to TB, is very suggestive, but not confirmatory of the diagnosis. In Canada, a lot of the time we'll send that tissue sample to the lab so they can do direct PCR on it to try to identify the TB (it's must more sensitive that way).

Unfortunately, in MANY cases of TB, we are stuck having to treat it empirically (i.e. without complete proof). The added clinical difficulty in your case is the fact you were in S. Africa which has a lot of drug resistance (as you know), so choosing a regimen to start you off on would be difficult.

TB can happen when you are first exposed to it (i.e. primary TB), but it can also happen when you are exposed to it...your immune system beats it down and the TB goes to sleep, but then it wakes back up a few years later and causes infection (i..e reactivation TB). Often this happens in immunosuppressed people, but make no mistake, completely healthy, immunocompetent people can get TB.

Working in Toronto, given the number of immigrants here (a huge proportion even compared to larger cities like Los Angeles and New York) we see one of the highest number of TB cases in N. America, so there's extensive experience.

Are you on treatment right now? Have you been in any other places where you could have been exposed to TB?

 
Old 07-21-2010, 05:27 PM   #3
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ashandtherev HB User
Re: scrofula/lymphatic TB

Quote:
Originally Posted by harka View Post
Hi Ashley!

You've had quite an ordeal this past year eh? So yes, sounds like you have TB lymphadenitis, though technically since your skin didn't bust open and start draining pus, it's technically NOT scrofula.

TB is a very interesting infection because it can infect almost every single organ in the body. The only place it has never been documented to infect is dental pulp. The problem with TB even nowadays is that we don't have the best diagnostic tests to identify it. Much of the time we are relying on culture based methods (i.e. when you actually have to go to the site of the infection and get tissue or phlegm) though there are a few new tests we can do on tissue to make the diagnosis a bit more rapidly (i.e. PCR).

The worst possible test to do to try to diagnose TB is the TB skin test. It is OFTEN negative in active tuberculosis and if someone has symptoms which are suggestive, you should NEVER rely on a negative TB skin test. The fact you had granulomatous inflammation in the lymph node in the context of a lot of exposure to TB, is very suggestive, but not confirmatory of the diagnosis. In Canada, a lot of the time we'll send that tissue sample to the lab so they can do direct PCR on it to try to identify the TB (it's must more sensitive that way).

Unfortunately, in MANY cases of TB, we are stuck having to treat it empirically (i.e. without complete proof). The added clinical difficulty in your case is the fact you were in S. Africa which has a lot of drug resistance (as you know), so choosing a regimen to start you off on would be difficult.

TB can happen when you are first exposed to it (i.e. primary TB), but it can also happen when you are exposed to it...your immune system beats it down and the TB goes to sleep, but then it wakes back up a few years later and causes infection (i..e reactivation TB). Often this happens in immunosuppressed people, but make no mistake, completely healthy, immunocompetent people can get TB.

Working in Toronto, given the number of immigrants here (a huge proportion even compared to larger cities like Los Angeles and New York) we see one of the highest number of TB cases in N. America, so there's extensive experience.

Are you on treatment right now? Have you been in any other places where you could have been exposed to TB?

I have my next appointment at the health department next wednesday. and I guess we will discuss treatment options then? They wanted to review all my xrays and stuff so they were waiting for them to come through to their office. I have spent time also in morocco (north africa) I am not really sure what the issue of TB is there, otherwise I have spent time in Europe. Also do you know of the probability of ovarian TB is? I have had excrutiating pain in my ovary, have been to the e.r. a few times for it and they keep saying its an ovarian cyst. But the pain continues, I've heard of tb in the reproductive organs, how would they diagnose that?? through a biopsy of the ovary/fallopian tube?? THanks so much for your reply, I can't sleep because I can't stop thinking about all this stuff..

 
Old 07-21-2010, 05:46 PM   #4
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harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: scrofula/lymphatic TB

Definitely....genitourinary tract TB can FOR SURE happen, though the most common place for it to happen when it's there is in the kidney and the urinary collection system. Unfortunately, given our pretty much stone age techniques of identifying TB, yes, they would have to have tissue from the affected area (e.g. culture and pathology of the actual cyst) to see if there's TB in that area.

It does take TB a while to grow in culture--sometimes up to 6 weeks. When was your culture set up?

The one thing about you being immunocompetent is that it would be a hard sell to invoke active TB in two different places in the body UNLESS you had something called miliary TB (incidentally in which the TB skin test is almost ALWAYS negative) which is VERY unlikely because you'd be EXTREMELY ill. The fact you've lost weight and have been having fevers in the context of the lymphadenitis is very suggestive of active TB, but given the chest imaging which suggests previous inflammation but not ongoing pneumonia, means you're probably not contagious.

I hope your appointment goes well! Let us know!

 
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