Hi,

Thank you so much for this query. I am Dr. Ditah(Treating TB patients is a daily task as I work in a developing country) and feel humbled having this opportunity to address your healthcare concerns today. I understand how frustrating it can be to strongly think of one thing and your doctor thinks otherwise. I will walk you through Tb so as to make this clearer to you. Tuberculosis is mostly caused by Mycobacterium tuberculosis, transmitted through air droplets. Rarely it may be M. bovis, through the consumption of unpasteurized cow milk. It can affect the lungs(pulmonary) or any other tissue(extrapulmonary). The diagnostic approach is complex and mostly based on clinical findings and some laboratory investigations(optional).

"Both of us were given raw milk as toddlers for several years."
Because you both received raw milk as toddlers, it does not mean you were infected. In fact, the following conditions must have been met before you could get infected from consuming this milk.
1. The cow milk must have been infected with Mycobacterium bovis, which is transmitted through the intestines. AND
2. Your system must have failed to contain or clear up the infection all by itself.
So, you consuming this milk simply puts you at risk and doesn't for any one moment justify that you were contaminated unless we can go back and answer these two questions. If you had developed this infection, the it would have been at least evident in one way or the other.

Also, out of 10 persons who actually ingest the germ, only 1/10 will go on to develop this infection. So basing our strongest argument on this exposure in childhood rather than the signs and symptoms will not be feasible. And even more so, in the presence of a negative TST/Qgold test which points away from previous exposure.

TST and Qgold tests simply tell us whether you have ever been exposed to mycobacterium before or not. It does not for real tells whether you have an active infection or not. It could be negative in cases where you have a very poor immune state that cannot mount a reaction to the injected antigene. If you feel healthy(not very sick) and this test came back negative, then we should actually look at different possibilities to explain your ill health.

TST/Qgold all by themselves are not very helpful except for identifying who has been exposed to this mycobacterium before and who has not. There has to be strong arguments in favor of a TB infection before this test can weigh in and make the decision to move on or not. Even when this test is negative in the presence of strong clinical arguments to make this diagnosis, the physician will always move on with total disregard for this. So the test all by itself is never the way to go.

I think your physician has not found reasons to suspect TB infection in you and this is why with a negative test, he is even more confident and feels comfortable dismissing this possibility as a possible cause of your symptoms. I understand your frustration about this but I will side with your physician for now unless you give us more reasons why we should disregard this test and push further towards extra pulmonary TB diagnosis. I think you should explore the options of pursuing further possibilities to explain your symptoms other than TB.

I ope this addresses your query fully and sheds more light on this. If there are any more questions you wish to ask, please feel free and ask specific question so that I can address them directly. I hope to hear from you because addressing every doubt or worry is very important and there may be some that I have not picked to address right away.
I wish you a good health.
Dr. Ditah, MD.

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Hi,
Thank you so much for this follow up information. I am so sorry to hear about this pain for the past 30 years. I am not too sure if caudal equina syndrome is specific for spinal TB but can be an argument in support of it. Did you do an Xray/CT scan of the spine? TB causes bone lysis(chops off bones). were there any arguments in favour of this? It needs a critical appraisal of symptoms and investigational findings to make this diagnosis.

If you have had findings like spinal pain, increased proteins in spinal fluid, increased white blood cells(predominantly Lymphocytes) and other peculiar neuropathy associated with TB, then treating for TB is largely advantageous even if you don't have it over not treating if for real you have it.

Treatment of TB is long and expensive with the possibility of serious side effects. Whenever symptoms are so concerning and we cannot clearly say it is not TB, we TREAT. So if your doctors have had difficulties doing the standard test(biopsy in this case), it should in no way prevent you from getting a well planned complete extra-pulmonary TB treatment. At least, after 9 months you would have known that it was for real TB or makes you stop looking at TB and search for other possible causes. I never let any test stop me from getting a client on TB treatment if I should find any argument(s) to do so.

I wish I were your treating physician and I would have put 1+1 together and make the decision to treat or not. I often treat than not when my suspicion is high and tests are not very much in support. Though wondering if TB of the spine could have gone on for over 30years without you presenting with severe spinal deformation and neurological damage. It is less likely unless you do have them.
Hope this provides more information and answers to your query. I am still available and happy to address more questions if they should come up.
Dr. Ditah, MD

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