Are professionals sufficiently concerned about extra-thoracic tuberculosis?

[FranklinPercival]

When I was treated in 2000 I was prescribed Rifater for 2 months followed by Rifinah for 4 months. According to NICE Clinical Guideline 117 I should have had Ethambutol for the first 2 months as well. I never felt the disease really left me. I have nodes all over now but my GP and local consultant are unimpressed. Where do I go from here? I have suggested FNAC, but nobody seemed to know what I was talking about. If no biopsy tissue is obtained then no chance of diagnosis. No diagnosis = no treatment.

[HelenC Partner TB Alert]

Hi Franklin,

You may notice that you are the first person to use this site officially - we are due to launch it in the next couple of weeks. I have put your question to one of our TB specialists - I will write up the answer as soon as I have it.

best wishes,

Helen

[Hidden in reply to HelenC]

Dear HelenC It is most interesting to see Franklin Percival's plight. The letters seem to end too abruptly however and leaves him and us hanging by a thread so to speak. His symptoms re his lymph nodes remind me of my mother very much so regarding she was diagnosed with lymphoma when she was 50 but as she was treated with 'leukeran' for lymphoma she had a heart attack at 74 and passed away. If only I had known then that lymphoma can be misdiagnosed instead of TB and visa versa. She had a lobectomy because of TB when she was about 29 & was probably deemed to be 'cured' of TB when she was given the course of streptomicin'.

It's too late to prove anything now for her sake but I do feel anguish when I think about her which is often.

[Rachel_Flowers Volunteer]

Hi Franklin,

To provide you with the best and most accurate advice, our TB specialists need a bit more information about your case.

Could you clarify what your initial TB diagnosis was? Was it pulmonary or extra-pulmonary TB?

Was your diagnosis based on cultures? (a process whereby bacteriological specimens are grown in an incubator.)

What has your doctor said about your nodes? Is he/she unconcerned about them?

With this additional information our specialists will be in a better position to provide you with the best recommendations.

Kind regards,

Rachel

[FranklinPercival in reply to Rachel_Flowers]

Hullo Rachel,

Thank you for your reply, further details herewith:-

In late August 2000 I saw a haematologist when I presented with a painful sub-centimetric right axillary node that had causing troubled for 2 or 3 years. He wrote to my GP expressing the hope that he had reassured me it was not sinister. He had not so convinced me and my GP then thought it might be Hodgkin's Disease or NHL and referred me to Surgical OP. I there saw somebody's registrar who proposed an excisional biopsy of my right lymphatic system whilst handing me a consent form, in October 2000. I said "Not so fast young man", being rather fond of my immune system and obtained his chief's assent to a core biopsy then and there which yielded caseating pus with giant cells and some evidence of granuloma formation, but no AFBs, so therefore no strain- typing so my diagnosis was empirical, as are nearly half of all TB diagnoses. My bloods were perfectly normal,

A CT scan did show a couple of slightly enlarged mediastinal nodes which could "scarcely be regarded as pathological", lungs clear and no other evidence. I was given the diagnosis in Wolverhampton on 28 December 2000. From late March to mid-August 2001 I felt better than I could remember feeling in my life, but things started going downhill again. I occasionally get slight respite when on 2gms + per day of antibiotics for other reasons, post-resectional recovery or pneumonia for example, but I am just fed up to the back teeth with feeling unwell and perpetually exhausted.

I do my case no good by looking very fit and well ifyou overlook the limp and the pained grimace, also of healthy complexion - no way do I appear pale, interesting and consumptive.

My GP has told me that all he knows about TB is that when you first have it you write it off as a case of 'flu, and then later on it comes back and kills you. My consultant is a charming lady member of BTS possessed of a nice line in humour. When I complained at bronchioscopy follow-up about not having enjoyed being held down by four girls while a fifth shoved a flexiscope up my nose and down my trachea she gave me a stern look and said, "Come come, Mr Percival, there are men in this country who would pay a fortune for that, so don't grizzle, there's a good chap."

Neither will be impressed by my nodes till they are >4cms preferably with effusive sinuses and to be fair to them both, the images of tuberculous nodes available on the intertoobz look as if they have escaped from horror films, and the PCT area where we reside has seen all of ca. 100 cases of any sort of TB over the last 13 years (ending 2009). I am also not going to infect anyone else

To be fair to me, I have travelled this road before, and I too had been surprised that one (count it!) piddling little node had been tuberculous. On the Sub-continent, however, having had TB once is thought to be a good reason for raising the index of suspicion if the patient complains of similar symptoms again. The fact that I now have nodes inguinal, supra-clavicular, cervical superficial and deep, and sub-mandibular in addition to a small left axillary one might just stir the odd synapse in the enquiring brain. Why does my current GP not consider the haematologist's letter of August 2000 to be indicative of anything?

At 61 I am of an age to be part of the final blip of people who drank raw milk, but as a child I was often also a visitor at a TB colony in Kent. So, was/is it M. bovis, M. tuberculosis, or some completely different mycobacterium?

Over and above all this, a few months ago a chap I regularly yarn with at my local was given a diagnosis of pulmonary TB which was strain-typed and the landlord, barmaids and several customers were screened, but for whatever reason I was not amongst their number. ???

Thanks again!

f.