UTI Non-treatment ?

Hi,

Has anyone else come across non-treatment for microscopic UTI?

I have urine tests every time I attend for my Lupus out-patient appointment and every time it shows up as having a UTI. The result gets sent to my surgery and each time a GP from the practice phones me to ask why I had it done and if I have symptoms, and then says that if I do not, they do not treat it in menopausal women as it is a common occurrence. I do have very mild symptoms but would not normally bother my GP with it. This has been going on for over a year, and I am just wondering if it is safe to go on leaving this untreated, bearing in mind possibly kidney problems with SLE.

Has anyone else come across this ?

11 Replies

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  • I am post menopausal and have had several instances of UTI's with none of the typical symptoms, only feeling more tired than usual, some cramps a bit like pre period ones and going a bit more often than usual. I'd be hopping mad if it wasn't treated and my doc doesn't hesitate so I suppose that is the correct thing to do.

    I keep a specimen bottle and have a test order ready made out, so if ever I suspect something is amiss I can get it down to doc's by 9.30 to be sent to hospital lab. My GP is 10 mins walk away but hospital is 20 mins bus then long walk to hand in at the lab. I have a very high opinion of my GP's caring, knowledge and carefulness.

    I have read that it is important to treat UTI's because the infection can go up to the kidneys. Even if that isn't true, why put up with feeling any worse than one has to?

    If mine didn't respond to a few days amoxycilline I would have to wonder what else might be causing my symptoms. By the way, it's important for people with SLE to avoid the 'sulfa' antibiotics like Bactrin which can make lupus worse so get that on your notes if you haven't already.

    Hermione

  • Did you watch the food hospital on channel 4 last night they covered this subject and used diet to help someone with recurrent UTI's well worth watching

  • I ignored a UTI and ended up with a kidney infection in A&E...

    They do ignore them in healthy women as they will fight it and it will go away by itself, but I think with an SLE patient they should treat it especially if it keeps happening. It is usually only 3 days trimethoprim 200mg twice daily to treat so nothing dreadful.

    Have you told the Lupus outpatient people that your GPs don't treat it? They are the experts after all.

    Jennie

  • The reason your GP is reluctant to treat UTI when you are not suffering severe symptoms.is to avoid the spread of antibiotic resistant bugs.

    The more antibiotics they use the more bugs develop antibiotic resistance and then you end up like I did with bugs inside you that cannot be treated with normal antibiotics and they have to drag you into hospital to have them dripped in.

    I've solved my repeat UTI by keeping my vitamin D3 level at 125nmol/l.

    Later this evening I'll write a post about the role of vitamin D in treating Lupus and how to go about it in a more sensible way than suggested in the research that proves it's helpful for lupus patients.

    sciencedaily.com/releases/2...

    itamin D Supplements May Benefit Lupus Patients

    this Science Daily article explains the research

    for the Science Nerds and those who like to take the latest research to their GP to try to keep them up to date here is the full text of the research.

    arthritis-research.com/cont...

    "Restoration of regulatory and effector T cell balance and B cell homeostasis in systemic lupus erythematosus patients through vitamin D supplementation"

    and if you read the following article you'll learn some tips on dealing with UTI and if you read the comments you'll see what I did.

    healthyfellow.com/1383/urin...

    "Urinary Tract Infection Alternatives"

    When I've time I'll return and explain a better way of correcting vitamin D deficiency than used in that Vit d/lupus paper as really we should try as far as possible to match what Human DNA is set to produce naturally.

  • Thanks for all this information, Ted (and thanks for offering to sell people Vitamin D3 so cheaply on your blog).

    I suspect that you don't actually have lupus, though - and because of that, I would just like to URGE other SLE sufferers to be careful.

    I do have lupus, and like a lot of us I have been desperate to find out what causes it, and what I can do to mitigate the symptoms and get back something of my previously healthy and active life. I read about the role and benefits of Vitamin D3 sometime ago and began taking it as a supplement, initially in large doses, and later on in smaller ones. There is absolutely no doubt that this:

    A) made me feel much better in myself; as a lupus sufferer, it is EVEN EASIER to be deficient in vitamin D, and this can affect mood profoundly, and

    B) put an end to the very severe bone pain I had been suffering for quite some time.

    However, recent evidence from the medical journals is not quite so unequivocal as your post suggests, and it is certainly FAR too early to see this as some kind of miraculous cure-all.

    My personal experience - which is the only capacity in which I write, as I am not a (medical) doctor, should alert people to the great need for caution.

    I had been taking vitamin D3 for many months when I first went to the surgery (August before last) with a UTI. I was treated with antibiotics - all the GPs at my surgery know I have lupus and were keen to stress the importance of looking after my kidneys. A couple of months later, I had another, and in January a routine urine test at a Rheumatologist appointment showed I had yet another. All were treated with antibiotics and all this time I continued to take vitamin D3 (along with a separate dose of calcium, which is very important) at 1000iu/perday as a maintenance dose. I was also taking MTX and 15mg of prednisolone.

    In March this year, I was admitted to hospital as an emergency with kidney failure as a result of lupus nephritis (class iv), and have spent the Summer having infusions of cyclophosphamide as a result. Not pleasant.

    I am not suggesting that vitamin D is not important. IT IS VERY IMPORTANT AND I STILL TAKE IT AONG WITH A LARGE DOSE OF CALCIUM. AT THE VERY LEAST IT IS IMPORTANT FOR BONE HEALTH IN LUPUS SUFFERERS WHO TAKE STEROIDS, AND I WOULD CERTAINLY RECOMMEND FOR DEPRESSION.

    HOWEVER, I AM suggesting that people with lupus need to be really cautious about the extent of the benefits they may get from vitamin D3. There is evidence that people with lupus have lower vitamin D levels, and that even after treatment with Vitamin D many still have lower levels of Vitamin D. Vitamin D may have a role in the onset of lupus and it may have a role in treatment. I have some papers from academic journals on the vitamin D research - some of which are very positive about Vitamin D and some of which are less so. I have to go now, but will try to find time to dig out a selection of these over the next couple of days and post them here for every one.

  • First may I make it ABSOLUTELY clear that I am NOT in business.

    The offer to post vitamin D to anyone AT COST PRICE + postage still stands because I appreciate there are some people who, for one reason or another, cannot have a bank card and therefore cannot take advantage of special offers available online.

    In the same way I post people 25(OH)D Vitamin D3 test packs at the price I pay CityAssays (£20) plus postage. I think it's important people, when using EFFECTIVE NATURAL amounts of vitamin D monitor 25(OH)D levels so they keep an eye on what is happening and adjust the intake in the light of test results. (CityAssays are Birnminghm NHS path lab). I simply want to make Vitamin D3 supplementation & testing as cheap as it possibly can be and if that involves me in putting my spares in an envelop to post that's no big deal. Trying to help people in practical ways by reducing cost to the absolute minimum is the best I can do and isn't that much trouble.

    I tend to forget my Vit D3 blog so it's not up to date with cheapest Vit D3 offers. Iherb are currently doing a years supply of 5000iu drops for £4.50 + post so that's probably (apart from full body sun exposure not available in UK till March) the cheapest source anyone can find but I'd be delighted if anyone can prove me wrong.

    Like MaggieS I am concerned any changes you make to vitamin D intake are consistent with how human DNA evolved which is why I consider the Vitamin D repletion used in the trial I linked to unsatisfactory.

    Our immune response is finely balanced and we must avoid sudden changes that dis-regulate the balancing mechanism. Therefore 100,000 iu supplements, weekly, fortnightly or monthly are NOT ideal. Taking only amounts below or at most equivalent to those human DNA naturally produces, given full body sun exposure,. is obviously within the range human DNA evolved to function with and has therefore adapted to deal with.

    I'm disappointed you imply I'm presenting Vitamin D3 as some kind of miraculous cure-all.

    The only thing that Vitamin D3 supplementation cures is vitamin d deficiency.

    But every cell in the body has a vitamin D receptor protein.

    Failure to maintain adequate Vitamin D levels inevitably means EVERY CELL in your body is not able to work as human DNA evolved it to function best.

    If we measure 25(OH)D levels in peoples living hunter-gatherer lifestyles naturally vitamin D equilibrium is attained/maintained @ 50 ng/ml or 125nmol/l.

    We also know 125nmol/l to be the level at which Vitamin D3 works best as an anti-inflammatory agent.

    None of us would think it a good idea to run our cars with fuel/air/water/fluid with levels just a quarter to a third of those specified by maker.

    Adjusting anti -inflammatory reserves (Vitamin D3, omega 3, magnesium and melatonin) to those normal in people living as human DNA evolved seems to me simply common sense for those with any inflammatory condition.

    If you call the fire service to control a fire on your property you would be disappointed if they used only a quarter to a third of the required resources.

    Lupus is a chronic inflammatory disease so requires optimum anti-inflammatory reserves at all times.

    We know sufficient about the way the human body uses Vitamin d and calcium to appreciate that when 25(OH)D is above 80nmol/l and ideally above 100nmol/l optimum calcium uptake is ENABLED.

    For those currently with low vitamin d3 levels doubling or trebling vitamin D status inevitably means calcium absorption is 2 or or 3 times greater therefore the requirement for magnesium, (that acts as a natural calcium channel blocker) is also greater.

    Once 25(OH)D levels are above 80nnol/l there really should NOT be any requirement for calcium supplementation as our diet & water should provide sufficient.

    There are online calcium calculators that help you work this out.

    Taking LARGE amounts of calcium supplements (more than 600mg/daily) increases stroke risk

    theheart.org/article/121466...

    Modern farming/food production/and processing means modern diets are short of MAGNESIUM and if we improved magnesium,& vitamin K2 intakes the problems.

    The aim should be to get immune function restored to the level humans evolved and establishing a natural vitamin D/melatonin status is an essential part of that process.

    For those who are interested in understanding more about the science of Vitamin D3 and Autoimmune disease there is a useful free full text paper

    "Vitamin D and autoimmune disease."

    ncbi.nlm.nih.gov/pubmed...

    I'll try a bit harder tonight to get my thoughts on Vitamin D3 and Lupus sorted out and will post a more detailed blog hopefully.

    Do be aware there is a lot of very poor Vitamin D research, much using the plant form Ergocalciferol (Vitamin D2) humans don't handle well.

    It's best if you can find the full text of the paper online to examine the supplementation protocol used and the 25(OH)D levels reached.

  • If anyone would like to see the papers I have, please send me a private message on the forum (click "messages" at far right, top of this page and email MaggieS).

    I am happy to email anyone the papers I have.

    Take care care everyone.

    Maggie

  • Hi Ted, thanks for the above information which I plan to read. Riverbird UTI's are indeed a hindrance and I can't believe that you have not been treated by your surgery. I have been married for 27 years and have never had UTI's until the past few months when I have had three. My GP prescribed trimthoprim on a three day course. My dilemma is that he said that I had white cell casts in my urine and that the sample would be sent off. When I phoned back a week later the sample had failed to be sent to the laboratory. I guess I'm thinking that I think with lupus/CTD we need to be vigilant ourselves to what can happen if the kidneys are affected through to treatment not occurring soon enough. I guess for the first time in my life I am actually also taking responsibility for my own health and following things like this through. An interesting discussion. Thanks

  • A very big thank you to everyone for their responses. A lot of information and opinions that are most helpful. Am going to read TedHutchinsons links and decide what to do about it. Once again grateful to everyone.

  • A question Ted. I can no longer tolerate UV light as i have a form of skin lupus. I am prescibed Ad-cal. I also take fish oils and a magnesium supplement. I do worry i'm not getting enough Vit D3. I know the Ad-cal has Vit-D3, but is it enough?

  • From

    medicines.org.uk/emc/medici...

    we see one effervescent tablet contains:

    1500 mg calcium carbonate (equivalent to 600 mg or 15 mmol elemental calcium)

    400 IU. or 10 micrograms colecalciferol (vitamin D3) as colecalciferol concentrate 'powder form'

    This product also contains sucrose (part of the vitamin D3 concentrate: approximately 1.7 milligrams per tablet) and soya oil (also part of the vitamin D3 concentrate: approximately 0.3 milligrams per tablet)

    If I was choosing the IDEAL calcium supplement (Bearing in mind I believe ALL calcium should IDEALLY come either from the food you eat or the water / other beverages you drink) I would not put calcium carbonate at the top of the list.

    The idea calcium is the one most likely to be absorbed, least likely to cause trouble and a form that is most readily absorbed and integrated into bones. If there was a reason I couldn't consume cheese/yoghurt then I'd look up the prices for calcium citrate. Citrate/malate or Citramate or calcium Hydroxyapatite

    It's interesting to see that when they want to implant devices into the body or rebuilt bone they use hydroxyapatite coatings it improve their incorporation and prevent rejection.

    I'd prefer everyone to get most of their vitamin D3 from UVB or sunlight but it simply isn't possible living in the UK in modern society. From October through the March the sun is too low in the sky. Most of us live under aircraft flight paths or downwind of industry or near a busy road. We are all getting less vitamin D3 from sunlight and for those living in urban environments the situation is worse. Hands and face exposure exposes only 10% of skin surface.and naturally our system is set to produce vitamin D 3 from 100% and doing that in public gets you locked up. Sunbeds with UVB tubes are a viable alternative but expensive and time consuming. I do my best to get as much SUN as possible, I use a sunbed with uvb rich tubes in winter BUT my main VIT d source is a 5000iu supplement daily in summer and 7500 iu daily in winter. To raise 25(OH)D to 125nmol/l and keep it there generally requires in the region of 1000iu daily for each 25lbs you weigh.for children you can work on the basis of 100iu for each 2.5lbs weight.

    The half life of D3 is 3~4 weeks. You have to imaging your saving up for something special and every 4 weeks 50% of your savings vanish. So after 3 months savings the first months savings are a quarter of their original value, the second months saving are half what you saved and the most recent savings are heading in the same direction. This is why when you look at vitamin D trials you have to take into account that it takes six months to achieve a reasonable state of sufficiency and equilibrium.

    Your body is set to produce 10,000iu and an adcal supplement provides 400iu.

    It's a pathetic virtually homoeopathic amount that is about as effective as placebo.

    I think these and the prenatal vitamins they give to pregnant women are more harm than good because they are worse than useless.

    Back in 1947 they were calling for 10,000iu daily as the standard dose for pregnant women. Naturally, when pregnant living near naked outdoor lives in East Africa where human DNA evolved, the 25(OH)D level rises to around 150nmol/l. a level which would require at least 10,000iu/daily to achieve.

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