My wife has been having recurring cystitis, hematuria, dysuria, nocturia, frequent urination, urgency, on and off for about 8 months now. She was diagnosed with urogenital TB based on a single PCR test (all other tests have been negative). Although she has been taking TB antibiotic drugs, the doctors can't explain why she is still having the symptoms again and again, or where the blood is coming from in urine. The only thing she had before these UTI issues was removing the left ovarian endometrial cyst by laparoscopy 2 months prior to the first hematuria experience, which was 10 months ago. She never had anything like this in her life. We have done a lot of tests (blood, urine, smear, culture, mantoux, diaskintest, GXpert MTB/Rif - all negative) and have doubts about the diagnosis as there are many questions doctors can't answer. Can someone help us with this or do you guys know anyone who can or where to seek help? Any advice is highly appreciated.
urogenital tb?: My wife has been having recurring... - TB Alert
urogenital tb?
tunnellight, I would suggest asking the GP to refer your wife to a different TB specialist for a second opinion: maybe one of the larger centres such as in London, where they might have seen a wider variety of rarer cases.
Alternatively, ask for a second opinion from a non-TB specialist with the appropriate specialism. We are all entitled to a second opinion on the NHS.
Your wife seems to have all the symptoms I had but I am male! It seems at least your consulting doctors know about the TB 'situation' whereas none of my doctors which were around 25 of then at least did not ever look at my previous TB history. It is seen from research papers that once TB is in remote tissue away from the lungs there is difficulty in isolating where the bacteria is adversely affecting those tissues the plot thickens and no one seems to have a handle on that problem which can be a big problem for the patient who suffers from the symptoms.......
Due to my extraordinary story and experiences when I thought I would never resolve my waterworks issues it seems obvious that a doctor or even a bacteriologist is required. There are such people at the Center for Tropical Diseases who seem expert at solving mysteries but how does one get to them?
It is seem that in many cases where 'they' know TB is involved in the equation empirical treatment with appropriate antibiotics is given to see if the patient improves regards symptoms & therefore 'they' know 'they' are on the right track so to speak.
In this scientific age I myself am appalled in respect that there is great difficulty in speaking to a doctor who knows exactly what to do. In one of my previous writings I mentioned that a so called specialist TB 'nurse' had never heard that Ciporofloxacin will kill TB bacteria.......
This proves to me that some so called specialists are not well read enough in all the complexities of that diabolical infliction that is tuberculosis.
Dear tunnelight,
What a worrying and frustrating experience. Your wife's case history does raise lots of questions. The only advice I can give is to keep pushing until you find the right consultant to give you the answers - as this question is beyond the scope of this forum. I can give you some general information with regards to the TB diagnosis, however.
It is the sad truth that there is no 100% effective test for TB. Doctors have to piece together a diagnosis based on symptoms and results from the various tests they can use. Oftentimes TB treatment is started before a diagnosis if doctors are pretty sure it is TB. This enables them to prevent further damage from the disease, but also a patient's response to the treatment can help confirm or deny the TB diagnosis.
From the number of tests your wife has had and her response to treatment there is a question mark over the TB diagnosis, but it does not rule out TB either. Therefore it would be good to get a second opinion from another TB professional, as well as continuing to press for further testing and input from other specialists.
I am sorry not to offer any more specific advice, but I hope you soon get the information and treatment your wife needs.
Best wishes,
Helen
@Soul01: Yes, that's what we are trying to do - get a paid online second opinion consultation outside of the country we live in, Uzbekistan, where the healthcare is subpar at best, not even mentioning the corruption and bureaucracy in the government clinics, the only place they can treat TB here.
@Micklemus: I know what you are talking about. TB is not well known in the West since the number of people getting this disease there is pretty low. I wish they order TB tests like they do when they have a slightest HIV suspicion. Actually, before they do any surgeries on anyone, this test should be mandatory. Doctors claim that a quarter of the world population has it in latent form. From my understanding, extrapulmonary TB is so hard to diagnose that you will need one doctor specializing in each part of the body where TB can develop in order to catch this disease early on.
@HelenC: Thanks Helen, Just replying means a lot to me, I really appreciate it. We are constantly pushing her current TB doctor and trying to get as much information elsewhere as we can. I'm trying to contact John Hopkins, Mayo Clinic and Cleveland Clinic, and see if they can reevaluate her diagnosis and treatment. I hope it doesn't cost a lot, as I don't have insurance for it. And you are right, we can't rule out TB and we have to continue taking the drugs. She's had really bad side effects from them.
HelenC = What informative and helpful writings from you..... All doctors must read your writings and take them to heart by learning from them. I see the TB respiratory doctor 28th of this month but I told my lady GP who referred me and who has been as helpful as she could bearing in mind she may not have much knowledge of TB that I should have met her 40 years ago......
This situation should never occur but it has occurred because no doctors as I have already said have ever referred to my previous TB history. Those who do not refer to medical history must be fined on the spot about a grand £. Methinks that might put their brains into gear? It has been confirmed as I said by a heathcare professional that it is instructed that the patient is the one who should inform the doctor about their history. This is idiocy in my opinion.
Tunnellight At least you are aware of what to do & I hope you succeed in getting your wife back to full health. It has taken me thirty odd years to discover that TB can 're emerge'.
Doctors must have known that for a very long time. Quite why they have not done what they should have done is a mystery to me........ One disturbing item on the agenda is the fact that 'they close ranks' if they feel a mistake has been made. They will do all they can to avoid a problem no matter how that affects the patient. There is supposed to be legislation in place here in the UK where they MUST be candid ! This may well take place in some areas but I wager this is not happening where I am. I have a diligent methodical nature and I was resolved to find the truth of my story since 2013 and hook or by crook I will resolve this complex matter. My advice is NEVER GIVE UP -NEVER!
Hidden You are right, doctors around the world tend to cover themselves in one way or another. When you go to a new doctor, he/she blindingly accepts all previous tests, diagnosis, treatment to be correct and start from there, instead of questioning them. They can always point fingers if their approach doesn't work. That's just frustrating. I hope you stay positive and recover from your TB soon.
Did you hear there is a blood test that is very comprehensive and it is developed by a local lady Professor here in Nottingham . I emailed her about three weeks ago and she is very quick to respond to emails. The test is the Actiphage test and it is comprehensive. She tells me that she has received a grant so that might speed up the release for use in humans as it is only used unofficially for cattle! The results are much faster than the skin test.(neck)
Them field trials tested 60 persons and was extremely accurate. Quite why there is a hold up in that test not being available for public use I do not know but think about the implications regarding those who have been given incorrect diagnosis., some individuals perhaps decades ago? Suddenly the light of day is seen and hey presto =trouble for some?
I have just today had a consultation with the very best in TB doctors. I told my GP it's a pity that I was not referred 40 years ago because that would have more than likely saved me a lot of hassle health wise. This TB /respiratory specialist is the ultimate professional and very very thorough. She seems to be not only an expert and has very much experience in respiratory disease but in extrapulmonary disease as well. She answered all my questions and did not contrive to rubbish my concearnes re the fact that I did have TB as a child in fact she said you are quite right TB can emerge at any time dependent on the individuals resistance to that infection. The dormant TB can become active decades after being quiescent.
I told her that I did not seek monetary retribution but I did mean to resolve what has happened incorrectly over decades.
She ordered a CT scan as it is 2 years since my last and has also ordered a visit to an eye specialist at the hospital due to my right eye vision deteriorating a few years ago ( when I had waterworks issues) that was never resolved but was 'cured' with a month on strong Cipro(2017). OI told her I felt lucky to have my tendons in tact in my ankles because some unfortunate individuals have Achilles tendons torn off and have to wear a special boot/s the rest of their days due to the Ciprofloxacin hurting them.......... She confirmed Cipro kills TB bacteria as opposed to a so called special TB nurse saying it doesn't...... (live and learn) I say!
Hidden , I'm glad you found someone who understands TB. It's so important to have someone who is able to answer your questions or at least know what you know. This helps with your anxiety and helps to stay strong mentally, the skill that most local doctors here (where we are from) lack. It's already hard to find someone who can diagnose the disease, let alone properly treat it, unfortunately.
I often mull over the posts which are similar experiences to mine & I wonder if you have made any progress for your wife? As I said my TB specialist made a note of the fact that
Trimethoprim did and then did not eradicate my urological symptoms but when after a month on that antibiotic my symptoms went away but then came back with a vengeance I then took 33 days of the ciprofloxacin > 500mg twice daily which did eradicate all my symptoms. She confirmed that indeed micotuberculosis is susceptible to Cipro but not at 250mg twice per day. Prostate gland is difficult to penetrate with any antibiotic but not Cipro which does invade the prostate! My TB specialist told me however that Cipro can hurt some individuals who have the Achilles tendon damaged by Cipro and have to wear a special 'boot' the rest of their days...........
I was grateful that Cipro did not adversely effect me but was of the utmost benefit..... Although I sensed the bacteria was affecting me again twice the symptoms went away of their own accord. I hope I am not tempting fate but my waterworks have been symptom free for two years almost.
Not so good recently I'm afraid. She has discharged me.... she didn't say clear off but she might as well have said that! She has however referred me to an Infectious disease Dr but I wish I had that pleasure a very long time ago.I remember telephoning our hospital laboratory but was told I would have to have a referral to speak to them....... I have come to believe finally that 'they' do not want to find the illusive bacteria within me.
I note that research papers of late state that the milder antibiotic compared to Isoniazid is moxifloxacin. they give it with other quinalones and I think Rifapine. It's on the net if one cares to research it doses and length of 'duration'. I got myself right in 2017 with just a month of Ciprofloxacin 1000mg once a day but it must be said that it was kill or cure for myself...... Not for everyone I'd say.
Well, when I created this post in January, my wife had been hospitalized again (the 3rd time). Her TB doctor suggested taking extra Isoniazid 200mg as intramuscular injections for 10 days in addition to her daily Isoniazid 75mg and Rifampin 150mg tablets she'd been taking under continuous phase. When she left the hospital after 20 days, she continued to take extra 100mg tablets of Isoniazid for about 10 more days. Also, we stopped having intercourse since the last time she had gross hematuria in early January and didn't have it for more than 2 months. I don't know whether the extra dosage of Isoniazid or not having sex helped at all. We have had doubts about her diagnosis from the beginning, and we have read that these drugs should be taken in a strict manner (dosage/duration), and this was not the case. The government clinic wouldn't hand out the drugs on holidays and Sundays. And, there was a 15-day gap between the "extra" Isoniazid dosages she took in January and February. I don't think that's how TB antibiotics work. And, if doctors mess up the dosage/duration in the beginning, it will be hard to treat TB if it recurs. That's why we are pushing the doctors to pay attention to this all the time.
Anyway, her continuous phase ended this month (April), so she is off the TB drugs now. She will be taking tests every other month as a follow-up. She hasn't had gross hematuria since early January, but the urge for frequent urination and painful/tingling sensation in the bladder is still present. She urinates every other hour, sometimes even more often. She is scared to death about seeing blood in her urine again every time she goes to the toilet, because of the sensation and the pain.
Meanwhile, I have also had some of my own urologic issues, like burning sensation when urinating and something feeling hot in the testicles. So, I talked to my wife's TB doctor about it and he said I might have prostatitis. I did the 4 glass Meares and Stamey test and the results slightly showed this and the doctor prescribed 1 month of Ofloxacin, Diclofenac, Vitaprost, Tamsulosin, Vitamin E and prostate massage. So, I took all but the prostate massage in March, and I felt better afterwards. But now, I feel like the symptoms are coming back. We also started having sex with my wife a month ago. Maybe it's related. But we will see...
Also, you are taking Cipro and I have no idea if it's used for TB treatment at all. I only know about the 4 drug therapy ones. So, I can't say much about it, unfortunately.
Apparently moxifloxacin is given in the multi drug resistant tb but your wife might not have that at all . It is worth reading the World Health org directives because they are aware of the latest regimes re TB. I see that it is established that moxifloxacin is more potent than Ciprofloxacin.... There are a few research papers on the internet explaining the details.I'm an engineer not a doctor and I deplore the fact that I am sticking my neck out and should never have had to do what I have done.... machines cannot tell you how they feel and I have a great respect for vets whose subjects cannot tell them symptoms either! But us engineers have a strict and sometimes meticulous method of testing and process of elimination but I never thought I would have to apply those skills to keeping myself fit. I am utterly apauled by doctors as a whole. There are indeed many excellent ones but finding them is difficult.
Bad news. Unfortunately, after almost 4 months of relative stability, my wife had gross hematuria and cystitis a few days ago again. Pain when urinating, reddish urine, pain in the bladder, feeling something in the bladder, tingling. We had to do painkiller and blood-stopping shots, some light antibiotics. We need to find another doctor :(. I'm so pissed at doctors, but this is expected in this third world corrupt country - Uzbekistan.
I hope you and your wife get resolution but not only that but get treatment to cure your sufferings. I've written the post below but apologise for the delay...... You may well have had better health I hope.
I'm sorry I haven't had a notification as I usually do in my emails about your additional post. I took Ciprofloxacin which 'my' TB specialist says has a serious part to play in the killing of TB bateria. I think I said previously that all my doctors and urologists (2) did not resolve my symptoms but one GP said that the 250mg Cipro twice a day was not strong enough so doubled that dose. That was in 2017. She gave me only one weeks supply on that full strength Cipro. I already had 80 tablets half strength which she disregarded. I obtained plenty of additional 500 mg Cipro and so I thought I would hammer whatever bug was affecting me. It did hammer the symptoms and I was 99.9% cleared but I have felt on two occasions my prostatitis was returning. After three or four days the symptoms went away. I took the full strength Ciprofloxacin for 33 days because I read on the net in the MIMS directive that a month is the norm for that infection........
All this hit and miss treatment with no resolution.
The urologist challenged me and said I could not prove I had an infection. I would not let them do a prostate biopsy and they said I probably had prostate cancer hiding behind.......
I went to a neighboring city and had an MRI scan which showed a shadow on the right side of my prostate but the surgeon who was a different one to the one on the consultation sheet ( why was that?) said that the echoes showed it might be prostate cancer. I had to draw his attention to the fact that my PSA levels went from 13.5 down to 7.3 after the 33 days on Cipro.......... he surprisingly said oh that's good.
In my case I think there has been a great deal of collusion to keep what is what hidden.
They can see as I can that a big stink may occur if I get angry enough to sue for all the mistakes that have been made from 1978.
Have you seen the 'new' blood test Actiphage. Cath Rees is the lead professor here in Nottingham.
I do know from the net that Ciprofloxacin is given to some who have multidrug resistant TB & yet a 'TB' nurse in Leicester had never heard that truth! My TB specialist who I get the impression bushes off my concerns but never the less sends me to specialists to be checked out still says that she 'doubts' whether I will 'get' active TB. She is keeping her distance and is quiet about all the mistakes that have happened re the misdiagnosis of lymphoma /TB. I can see that TB was never entered into my equation re a test for TB so it seems clear that I may well have the bacteria within me & that on certain occasions if and when my resistance is not adequate that bacteria hurts me.
Ciporofloxacin can hurt some who take it. But I do not know what I personally would have done without it. I didnot notice Cipro hurting me only after 30 days I got the shits so took Metronidazol with the Cipro for three days and the symptoms stopped. I see that metronidazol is given with Cipro to prevent C diff! I am no doctor but I am an engineer.
My self treatment was considered by me as a kill or cure decision. If anyone sees blood in their pee that happened in 1978 then again in 2013 and again in 2016 with out any resolution I firmly believe those responsible for the resolution of that affliction do not know a great deal about the subject.
I have sometimes when my bladder 'flares up' a warm sensation after peeing..... I've often said to my doctors -I find it 'not much fun to pee'! Lets face itand accept it that when anyone pees it should be a pleasurable sensation, and one of relief in stead of being not much fun.It was a young lady registrar (junior doctor who prescribed 3 months of Cipro but low dose. It was not strong enough because within a week problems. 3 times a night getting up and an eggcupful for the touble! I told the GP if I have to get up in the night to pee somethings wrong.
I am so pleased I was given the chance of the Cipro even though she got the dose wrong......
I soon rectified that by looking in the Mimms chemist's 'bible' Ist line =trimethoxazole.... second line Cipro for 28 days 100mg once at 8 am per day. moxifloxacin is more potent and a chip off the old block. I am told by the TB doctor that it is short courses that cause resistance..... so why do doctors always give short courses of antibiotics? I have lhad three courses of Cipro in my lifetime, one in 2001 IV for a week and then i box + metronidazole to go home with. 2017 33 days and this January 2021 29 days... I didn't think it had worked as it was still sensitive 3 days after the finish as I did not have any more tabs left otherwise I would have taken another months worth..... low and behold it turned out right with a few days with no symptoms. Heaven.
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