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Old 07-21-2010, 04:56 PM   #1
ashandtherev
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(female)
 
Join Date: Jul 2010
Posts: 2
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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