Urine infections in MS – an integrated approach to prevention & treatment.

I always discuss the need to stay one step ahead of the bladder in MS with my patients, as having a urinary tract infection (UTI) can mimic a relapse and cause real setbacks.

Explain this to your GP, request they prescribe antibiotics at the first sign of infection, and that NICE guidelines recommend a longer (5–10-day) course for these ‘neurogenic’ UTIs.  It’s also worth taking at least a prescription away with you on holiday to prevent losing days trying to see a doctor.

Check! Whenever you experience new or worse symptoms of MS, always check for a silent UTI. Aswell as  visiting your surgery or MS nurse, you can also buy urinalysis dipsticks for home use. A change of colour to Leukocytes or Nitrites may indicate infection, which should be treated.

dipsticks

If you take antibiotics, top up with probiotics (good bacteria), during and afterwards, to prevent digestive problems and thrush, and boost your health and resistance to future UTIs. Lactose-free capsules or powder are better than sweet probiotic drinks. In fact looking after the good bacteria in your gut is a huge and important topic for all of us, and particularly if you have an auto-immune condition, and there’s lots of ways you can do this.

bacteria (1)

Also drink plenty of water, pee frequently, and cut out sugar to help your immune system fight back.

Causes.

One cause of UTIs with MS is the bladder not emptying fully, because the muscles involved are not working together properly. Struggling to start passing urine, feeling there’s some left, urgency, and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, generally with the continence service.

bladder ultrasound

Try peeing twice every time, but if a residual (left over) volume of 100mls or more is found, you may need to learn how to use intermittent self-catheterisation with small, lubricated, disposable catheters, to empty fully.

ISC can be liberating, but also potentially cause infection; technique and catheter type are important, so stay in touch with your advisor.

ISC

Prevention and natural treatments

If you seem to keep getting urine infections one after the other, it’s quite likely that you are just not completely throwing off one infection.

It’s a very dispiriting situation, However –  there are lots of things you can do to shake off and help prevent recurrent UTIs.

The most common bacteria causing UTIs is E coli, which can cause recurrent UTIs, as it can burrow into the bladder wall, and release spores after antibiotics are finished. However, it’s important that your urine goes to the lab, as rarer bugs are also possible, including from candida, which we’re not covering here today. GPs are recommended not to prescribe low dose daily antibiotics, but they sometimes help as a last resort.

e-coli bacteria

Sometimes antibiotic treatment no longer seems to work, or some people prefer to try herbal remedies with antibiotic properties. Stopping the bacteria from sticking to the bladder wall and flushing it out when it does is the aim of these natural agents. There are many, with varying degrees of research to back them, but the ones that I have seen most success with are: (Nb I don’t get any benefit from these companies!)

For prevention:

  • Concentrated cranberry tablets,  eg Cysticlean

http://www.cysticlean.co.uk/main/index.phpcysticlean 2

For prevention ( low dose) and/or treatment ( full dose)

  • D-Mannose; a simple sugar that e-coli latches on to and can be flushed out on, and is now being tried by consultants at the national hospital for neurology and neurosurgery.  https://www.waterfall-d-mannose.com/dmannose-options.html

d-mannose

  • SOS advance; a colloidal solution of antibiotic herbs that can be used preventatively or at times of infection.

http://www.sosessentials.com/s/

sos-advance

For recurrent UTIs with an indwelling catheter

If after a catheter changes, with symptoms, ask District Nurses to test from the port after 48 hours, and have an antibiotic at the ready; test again 48 hours after completion.

The ‘Bardex IC’ ( infection control) silver tipped catheter has been shown to reduce UTIs, (reports infections 3.7 x more common in those catheterised with a normal catheter vs a sliver tipped one) as it prevents a biofilm forming. It becomes effective after around 3 months ( and has to be changed regularly like all indwelling catheters), so don’t give up too soon.

Uro.13.BardexIC2way.0165SI (1)

If all else fails, ask for a referral to urology, to check for bladder stones, and possibly for bladder washout, and to discuss possible treatments.

See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting, and always check any natural/herbal remedies are safe to take with your condition and medications.

UPDATE: – I thought this comment from Jenny was important enough to update the blog with:

“I thought I’d let you know about some other treatments for UTIs that are being tried on me that no-one seems to know about (not even doctors in Oxford, nor the MS specialist nurses – I’m keeping them posted too)..

So one is Uromune, supposedly a vaccination against four strains of UTI including e-coli. It’s inactivated bacteria taken in pineapple juice under the tongue once a day for 3 or 6 months. They’re doing a trial in Reading and there are details here http://www.readingurologypartnership.com/uti-vaccine/4594063839 – you can’t get on the trial if you self-catheterise but can pay privately for it (not cheap – including seeing the consultant it was about £600 for me).

And the other is iAluRil, a GAG layer replacement, which you stick inside directly with a catheter, to replenish the non-stick lining of the bladder, and keep in for as long as poss (I do it at night and sleep with it in – it’s only 50mls). There are apparently two places in the UK which don’t do this and Oxford is one, so I go to the Royal Berks for that, on the NHS. Info here http://ialuril.co.uk/

Apologies if you knew all this and that just took up time that you’ll never get back! But I thought, if you don’t know about it, you’re the sort of person who will be interested and use the info to help people. (btw I have no financial links to any of the organisations – am just a person with MS and RUTIs who’s trying everything!). And also I should let you know that I’ve been on the Uromune for nearly 3 months now and just had an e-coli infection… hey ho.”

–Dear Jenny – this is fab; I’m going to post it up as an update so everyone can see, thankyou. I do have a patient who was on the immunisation trial but unfortunately it did not work for her. The aAlUril I have never heard of and am going to look into. Thanks again for your most useful comments!
all the best, Miranda

 

 

8 things I’d do if I got diagnosed with MS

to-do-list DOING NOTHING IS NOT AN OPTION!! MS can have a very serious impact on your future quality of life. All measures you can take to stay well, have the most impact when they are done early on, and stuck to consistently. Nobody knows what causes MS; but it’s agreed that genetic susceptibility can combine with environmental factors to trigger the auto-immune confusion that causes the body to attack it’s own myelin.

As far as the disease process goes, It’s widely believed that the early inflammation causes damage, which causes later degeneration, but we now know that degeneration is also a factor right from the start. However, there is a lot you can do to combat both inflammation and degeneration, both with medical treatment and your lifestyle & nutrition. Having worked as an MS specialist nurse for about 13 years now, here’s what I’d do if I got a diagnosis of MS:

1) ADDRESS INFLAMMATION & DEGENERATION WITH DIET &LIFESTYLE. Get George Jelinek’s book ,’Overcoming MS’ and follow all the dietary and lifestyle recommendations to the letter. This involves

Plant based whole food diet                                                                                      High dose vitamin D3                                                                                                  20g omega 3 oil                                                                                                        Exercise                                                                                                              Sunshine                                                                                                                Meditation

I consider this to be a rock solid foundation for good health, whether you have MS or not. It’s also so great to keep hearing individuals stories of improvement, even with long-standing and progressive MS, following this approach, and both Jelinek’s, and more and more research on diet and disease backs up this evidence based approach. See www.overcomingms.org

2) Find out about your options re drugs. I am not going to be talking about diseases modifying treatment (‘DMT’) choices here, only broad concepts.

MS drugs aim to stop or reduce  inflammation, manifested as relapses, in the hope that this will prevent the degeneration. See the infographic in my Alemtuzemab about the relationship between safety and efficiency of the various treatments available.

An important point to consider is that some of these more effective drugs are ‘second line’ treatments, which means they are only available to you on the NHS if you have already tried the standard drugs. There are also sometimes drug trials recruiting, where you can access a drug as part of an experimental trial. (see other posts) There is a link on the MS Society website to find out what trials are ongoing and how to get involved in a trial.

MS drug treatment is a fast changing topic and you need to have a serious discussion  with your MS Nurse and/or neurologist to find out what you are eligible for, and then read round the subject and discuss to make an informed choice.

Make sure the information you use to make your decision is as objective as possible, and not coming directly from the companies making the drug. www.msdecisions.org is a decision making tool that’s been put together by the MS Trust, the MS Society, the UK MS Specialist Nurses Association and the Department of Health, so its’ as objective as you are likely to find.

Last important point: The earlier in the disease process that a drug is used, the more effective it is likely to be.

3) Some – not all – but some, people with otherwise unexplained medical conditions, have an underlying food intolerance, and you can be completely unaware of the problem. If you do have an intolerance, for example, to gluten, then every time you eat that food, you set up a chain of inflammation in the body, which can certainly exacerbate any auto immune condition.  For that reason, I, personally, would also want to identify food intolerances. Finger prick blood tests are available online from companies like York labs and Lorisian. There’s a lot of controversy about them, and they have been found sometimes to be unreliable, with a tendency to just show up with whatever you’ve eaten recently. Another way is to spend some weeks doing s ‘exclusion diet’, to see if you can find any cuplprits. Here’s one example: https://avivaromm.com/elimination-diet/ . The difficulty here is that MS is a condition with ups and downs anyway, so it’snot necessarily going to be clear.

However, in my experience, when people who have a food intolerance identify and avoid that food, they get a lot better all round, so its worth doing.

4) Gut health There’s a growing understanding about how problems with the integrity of the gut wall,  (the tight junctions that prevent the wrong molecules passing through into the bloodstream, triggering this type of food intolerance) and the right mix of bacteria in the gut, can contribute to auto-immune diseases. This is a huge topic – search ‘heal your gut’ or similar. There are various ways to do this, by avoiding food intolerances, using supplements like the protein L-glutamine, various products to kill off any overgrowth of yeasts etc ( as in step 5) and probiotics.

Then, hopefully, your exclusions don’t have to be forever.

 

5) Consider a clear out. Environmental factors combining with genetic susceptibility is what is thought to trigger MS , and as we are still unsure exactly what those environmental factors are,  there is still a lot of interest and research going on into the role of viruses etc in MS. Even if this turns out to have nothing to do with the cause of MS, any inflammatory condition will be worsened by an overload of any organisms that should not be there, whether they are yeasts, bacteria, virus, or parasites. People who are concerned that they may have an overgrowth of yeast, wrong gut bacteria, etc may want have a ‘clear out’ by doing a  3 month ‘detox’ with a strong natural detox agent. I like something called SOS-Advance, which is a colloidal suspension of strong anti bacterial, anti viral, anti parasitic plant oils like oregano, neem etc, but there are plenty of other herbal ‘de-tox’ products. Be aware, before starting any detox product, that it’s possible to feel really grotty for up to a week at first, if you have a ‘die-off’ reaction. If this happens, drink more water, rest, make your diet light and fresh, treat any constipation, and shower/bathe frequently.

6) Eat Really good Food – it’s not all about avoiding stuff-  food has so much power to affect the cells of our bodies for brain and nervous system health, so read up on a wholesome plant based diet, and ‘eat the rainbow’, especially dark green leafy veg.

7) Becoming more resilient to stress. Super important. We know that unmanaged stress causes and inflammatory cascade in the body, and there’s enough research to identify it, along with infection, as a trigger for MS relapses. There’s load of research now on the power of meditation, mindfulness, and relaxation. Personally, and especially if you struggle to fit meditation or deep relaxation into your day, I like the HeartMath technique, where you learn to synchronise your heart rate variability, and get feedback as to how you’re doing. In my clinics, I use the desktop teaching program, and send people away with the simple technique to do regularly, but you can now purchase an app version, available from itunes: https://store.heartmath.com/innerbalance

8)Read up on intermittent fasting, even if it’s just to use if and when you’re aware that you have inflammation or relapse going on.

So, TO SUMMARISE, and adding the Jelinek/Overcomingms recommendations:

AVOID:

  • saturated fat ( meat & dairy, coconut & palm oil)
  • other fats in processed food
  • unmanaged stress
  • physical inacitivty (as much as possible)
  • foods which you test intolerant to
  • smoking
  • eating too many calories for your needs

TAKE:

  • a plant-based, whole food diet
  • eating a ‘rainbow’ with special focus on dark green!
  • high dose vitamin D3, keeping blood levels around 150nmol/litre
  • 20g omega 3 – 2 dessert spoons of cold pressed flax seed/linseed oil fulfils this
  • probiotics
  • Any appropriate MS treatment drug
  • meditation/deep relaxation 30 mins daily to improve resilience to stress, or regular Heartmath technique.
  • as vigorous as possible exercise 30 mins, at least 3-4 x a week, outside if poss
  • the sun – as close to all over as poss, 10-15 minutes when possible
  • Lipoic acid 1,200mg – see this post

and take courage – many people with MS go on to live healthy lives well into old age. I would encourage you to do these actions to help you to be one of these. 🙂