Doctors inexperience of Tuberculosis.

I had contact with tuberculosis that was rife when I was 5 years of age & so inhaled the bacteria as my uncle and mother had active TB. My wife is the same resistant to TB same as me but are we who have so called latent TB that has been proven through xray in mid age never have our medical records looked at with a view to the fact that if we become ill and the diagnosis of our current illness is vague we are blocked by the GP's as regards referral to any TB clinic........ The reason is clear. If TB is found to be the culprit of our illness that leaves the doctor's miss diagnosis wide open to claims of neglect. That however is what it is, neglect.

A special TB nurse who sounded a very nice person said " it is sometimes difficult to 'get past the GP's" regarding referral....... What a diabolical situation exists here in the UK with no one to turn to when the GP's blank the patient.

[hottchoc]

Hi Micklemus I absolutely agree with you! We all need to start shouting loudly about TB. If GPS have no idea then you can forget the public having any kind of awareness. This whole situation is not taken seriously by anyone not affected. I’ve written my concerns to my MP, public health, different kinds of professionals and even wrote to parliament. Sometimes I get an answer others ignore me. Well TB is not something to ignore, especially when your lungs become destroyed! Why is it that Drs are blinded. I want to to go round and wake them all up and give them a talk. Saving just one person from this will be one more than what they are doing!

[Hidden in reply to hottchoc]

It's always comforting when someone is on the same wavelength as you....... As I said it's high time that self referral is possible to make an appointment to speak with specialized Tuberculosis professionals. I cannot remember if I said that a very educated special TB nurse said that I should not have had to pay for the Quantiferon gold test that showed I had TB antibodies. She also added that it is sometimes very hard to 'get by' the GP's.

I was astounded by that because that should never happen and there is one reason for that & that is ignorance.

Because I had been diving 14 years up till I was 43 my chest xray proved I had had TB with calcifications to both lung fields. A fortnight before that the previous xray showed fluid on both lung apexes but no reason for that. I firmly believe that a person can be partially resistant to TB through their lives. It is well documented that if the bacteria reaches the gut

scares are seen where the TB has healed but the person had suffered gut aches & pains at various intervals.

I had terrible waterworks issues now and again but the ironic thing is that umpteen doctors never consulted my previous history regarding the fact that I had actually had TB but my immune system had encapsulated it. My GP told me yesterday " I did not have latent TB"!

This is one of the reasons there should most definitely be a self referral system there by bypassing those doctors who quite frankly do not have a clue about TB as a seriously important health issue......... TB will continue to thrive in this environment unless something changes and drastically so. I can vouch for the fact that our family doctor Neville told me that he visited a young chap in bed who had a cough. Several doctors had looked at him

before that but he told me they were not used to seeing TB as he was & so the sputum he ordered confirmed his fears because yes that young man did have active TB.

Now there are the ways and means to cure TB it is annoying doctors are not letting patients get access to a cure....... This is nothing short of despicable ignorance.

It must stop right now.

[jtallsmith]

Does anyone have any advise on how to get tested?

I am sure I have Tuberculous Arthritis. I've worked out where I caught my TB. It was when I was working in Vodafone in Newbury in 2007. I often had someone sit next to me, seemed very unwell and had scabs on his hands. I guess they were from TB treatment. I could never get diagnosis from my doctors and self treated with Doxycycline because I thought it was Lyme disease. It went eventually but is back now.

I've tried 111 twice with out success. My doctor says she will not test me because I don't have contact with a known TB sufferer.

What's the best route I can take to get tested ?

[Hidden in reply to jtallsmith]

First of all it depends where you are because there are some cities that have walk in Tuberculosis units. I believe Reading which I believe is in Berks. There may now be others such as Bradford? The Spire Healthcare hospitals have The TB ---Quantiferon Gold tests available but they cost about £160. They are very accurate and are not affected by those who have been BCG vaccinated. They prove that a person has antibodies against TB but they do not prove active TB. It was a good prime test for me because no doctor can refute the fact that if your test is positive for Tb antibodies then TB bacteria was once in your immune system. I was under the impression that TB in the joints was secondary to the primary infection from TB. No doubt Helen would be able to comment with more experience than I.......

It has taken me 40 years to be referred to a TB specialist and even in 2013 when 'they' knew Lymphoma could be mistaken for tubercular lymadenopathy 'they' did not refer to any of my previous medical history notes that proved I had already been infected with pulmonary TB. It is notable that there are very few doctors who are aware of the technicalities regarding any knowledge whatsoever re Tuberculosis and they are most certainly not up to the mark so to speak re the latest tuberculosis info.......

[jtallsmith in reply to Hidden]

Thanks for the reply.

I've tried the Royal Berkshire NHS but they won't test me. There is a Spire Healthcare hospital in Reading so I will try phoning them later.

I believe Tuberculous Arthritis is more likely in cases where the TB is dormant for a while and re-activates later in life. Which is the case with me.

I've taken four courses over the last five months of Doxycycline which gets rid of the TB for a while but it always comes back. If anyone has TB and can't get treatment then Doxycycline taken twice a day should help. You can buy it on line as anti malaria capsules. I think my TB is getting immune to it now.

[Hidden in reply to jtallsmith]

I saw that Reading has a walk in TB clinic with no referral required when my GP's were not listening to me. My regular lady GP must have at last read my previous history lately but none of the doctors out of 28 of them ever read my previous history........ I found that incredible but true and the manageress of our GP practice

confirmed that is true..... The lame excuse is that it is not easy to access paper notes! I eventually said to her -Why am I being denied access to the TB unit when you know I am latent TB positive. ? Quite a fierce argument ensued and I said to her...I still have your letter asking advice of senior doctors about my difficult case!

Within three days I got my referral.....

She knows full well that if I do not trust what is said I will write letters to confirm what transpired in the 'meeting'..... In black and white is best or rather the only way to go

in my opinion. 'They' cannot refute what is written. I have a catalogue of mistakes proven by documentation that goes back to 1990 and then again in 2013. What is significant is the lax attitude of so called specialists.

Primary care seems very uneducated in TB...... The specialist TB lady I saw is the ultimate professional and knows all there is to know about TB but she will not denigrate those who have made mistakes but rather falsely state that they would have done such and such when I know damn well they did not do their job as per the legislation. I asked her how on earth can a correct evaluation of a patient be accessed when no medical history notes have been referred to...... I backed up our consultation with a nice letter to her thanking her for being so thorough but also enclosed a letter which is none other than a fob off by a lymphoma specialist who I strongly feel was barking up the wrong tree...... luckily for me all my notes prove all the lot of them did not read my notes and therefore a correct directive to the lab was not carried out therefore they did not observe and carry out the legislated criteria...... Hence the wrong verdict which could well have been disastrous if my immune system had not been what it was. I did have radiotherapy which I feel I did not need.

I was told by a special TB nurse that I should not have had to have paid for the Quantiferon test based simply on my medical notes that stated in 1978 my CXR

showed a previous tubercular infection...... So if one has had the bacteria then refusing the test seems to amount to gross negligence.... Aren't they bothered ?

They might well be if you write them a nice letter of enquiry?