Anyone used Prof J. Malone-Lee's approach for Chronic UTIs?

[Chancery]

Hi, I've just discovered this book by Prof James Malone-Lee and wondered if anyone has had any luck in getting this type of treatment from the NHS?

amazon.co.uk/Cystitis-Unmas...

I've currently got a recurrent UTI which antibiotics are only handling while I'm taking them. As soon as they finish it just comes back. I'm treating it myself at the moment with two courses of Amoxicillin I had in the house from previous infections (I've been having this problem, getting progressively worse, since at least 2015). I intend to take one after the other in an attempt to really KILL it, but if it doesn't work I'll need to go back to my doc's and try and convince them to treat it as a chronic UTI and I'd like to use his approach. However, as is normal, my last (and only) urinary test came back negative, which is hardly surprising given how many antibiotics I've had and how much water I drink!

Anyone familiar with his work and been able to use it to get similar help from an NHS GP?

P.S. I've had longstanding bladder sensitivity, urge incontinence, painful urethra etc for years now. I've never bothered trying to get it treated because I'm 64 and have no expectations of ANY doctor, male or female, taking any of it seriously, but I feel it is EXCATLY what he claims, an infection which is well-embedded in my bladder, that is causing all these problems and is now causing more and more UTI infections. Any help appreciated thanks!

[bantam12]

The only way I got rid of chronic cystitis was to take a long term low dose of Trimethoprim, I was on it for several years and it worked. The other issue to consider is atrophic vaginitis which cause uti's and also causes symptoms of uti's even though no infection is there, the treatment for that is topical oestrogen.

[Chancery in reply to bantam12]

Thanks Bantam. I'll look into atrophic vaginitis.

[anna1234567]

On advice of a specialist in infectious diseases, Im taking 2 grams of D-Mannose each night and it helps me.

[Chancery in reply to anna1234567]

I'm already taking D-Mannose, 3000mg a day, but I'm not aware of it helping any. It does bloat my stomach, however!

[Nessie50]

I am going to see prof malone in July , I am 64 also but can’t have oestrogen so hoping he has answers. Will let you know.

[Chancery in reply to Nessie50]

Thanks, Nessie, I'd appreciate that.

[Konagirl60 in reply to Nessie50]

Just wondering....why can’t you have oestrogen? Cancer worries?

[Nessie50 in reply to Konagirl60]

I’ve had total hysterectomy due to endometrial cancer. So yes cancer worries🙂

[heatherevans28]

I'm very familiar with his work and personally decided against working with his team. I work with Mr Ali who also specialises in embedded UTIs, and much prefer his approach. However there are plenty of people who have had success or at least a reduction of symptoms with long term high dose antibiotics. These can be prescribed by an NHS urologist or by referral to LUTs, which is the NHS clinic James Malone-Lee used to work with. I would advise against working just with a GP as they do not have the specialist knowledge to advise on the risks and monitor side effects etc.

[Chancery in reply to heatherevans28]

Hi Heather, can I ask what Mr Ali's approach is?

[pizon]

I too took D-Mannose I got the Now brand in capsule form and would take 2 or3 capsules 2 times daily I also took (and still do) make marshmallow root tea and drink it 3 times daily with slippery elm capsules before meals I no longer have Uti or IC I hope this helps you because the constant use of antibiotics did more harm then good for my stomach

[Chancery in reply to pizon]

Yes, I find antibiotics very tough on my gut. They also give me thrush every time and I'm pretty sure they have contributed to the vulvodynia I have, if not created it. However, my life is being really circumscribed by this constant urinary infection/irritation. I'm on my own and had two attempts at getting a dog in the last few months and had to give them both up because UTIs were limiting my ability to go out and to take care of an animal. It's disrupting everything from my sleep to my ability to get out and exercise and I'm really tired of it.

[pizon]

I am so sorry to hear that give the D-Mannose and the marshmallow root a ty I truly has worked for me Google it and do some research 🧐 I had a hell of a time with all the different meds take care and keep me posted

[SueWhite73]

I’ve heard of him and his clinic and that will be my next port of call if my current treatment doesn’t help. I’ve started bladder instillations. Only two weeks in and no change but have been told to expect 6 weeks before seeing anything. I do take marshmallow root tea and this does help. Thinking of trying slippery elm as well. Hope you get some relief & can get a dog x

[Chancery in reply to SueWhite73]

Thanks, Sue. Can I ask what bladder instillations are?

[SueWhite73 in reply to Chancery]

It’s a process to put medication in a liquid form directly into the bladder by a catheter. The medication is meant to help replace & repair damage to bladder lining. Done at the hospital as a day patient (I’m usually in and out within 30 mins). Early days yet so need to do the full course to see if it brings any benefit 😀

[Chancery in reply to SueWhite73]

Sounds horrific to me, but I imagine if it works it will be WAY better than what you are putting up with. Sincerely hope it works out for you! X

P.S. Can I ask you about your tea. Is it specifically marshmallow ROOT, as opposed to the leaves? I do have it in leaf form but yours may be different?

[SueWhite73]

Hi yes it’s sounds horrific and I was really dreading the catheter but to be honest it’s not much more than slight discomfort. A bit sore for a few days afterwards but I’m hoping in the long run it’ll help & be worth it.

I buy marshmallow root tea (not leaves) from Health Embassy on Amazon. I make a cold brew & drink it twice a day before breakfast & evening meal. Def worth trying 👍

[Chancery in reply to SueWhite73]

Great, thanks, Sue. I'll order some root tea tonight. Best of luck with your treatment. I'll keep my fingers well-crossed for you.

[Babz7019]

Have Professor Malones book Cystitis unmasked n he does not beleive in D.Mannose nor Cranberry Even though i bought the one Biona without sugar addded just pure Cranberries ...n no iv'e not been to see him as was concerned my Gp would not give me the prescrition that The Prof sends to them .So i asked my Urologist to refer me to the Whitting ton in London where some of the Doctors are who worked with the Prof .

Luckily he did n i now see Doctors there they test your urine called a pee n flee fresh urine inspected straight away n yes i have a chronic embedded infection .

They send your meds straight to you through the post .

The first ones i was allergic to ..but after sending an email it was changed .

I had a telephone consultation yday as couldn't travel at the mo due to a nasty uti .

The Doctor was very understanding and had an email this morning stating which meds have been prescribed you ring the pharmacy quote your hospital number and the meds are being posted .

Babz

[Chancery in reply to Babz7019]

That sounds like a great method of treatment, Babz, Unfortunately I'm in Scotland so I don't think I'd be eligible for any of that. I don't know if Scotland has an equivalent service. And I'm with Prof Malone on Cranberry, and might be heading that way on D-Mannose too. Cranberry juice never helped me and the UTI I had before this one, also long-standing, I was taking cranberry tablets, to see if they were any more effective, and found they made things worse, both for the UTI (I found they made it hurt more to pee after taking one) and for my MCAS; they were causing allergic reactions. So not good.

I've been using D-mannose, which upsets my stomach and causes terrible bloating, but can't say I've found any help with them at all. I'll be takign them again when he antibiotics are finished but I'm not holding out much hope....

[Babz7019 in reply to Chancery]

Well Chancery it needs to be a cranberry with no sugar so the one i use is Biona pure pressed as for D mannose its just a sugar ! I also take hippurate as prescribed by the Whittinton makes youe urine well it kills the germs as they shed from a chronic embedded infection .I'm sure if your urologist would refer you not GP ..no matter where you come from they will see you it's a long wait but so worth it ...it will take a long time to cure n they tell you that .

Even people travel from abroad to see them .

So think it over n if it's appropiate ..as younhave a lot of uti not often picked up by normal testing which is so out of date ...

Give it a try

Best wishes

Babz

[Chancery in reply to Babz7019]

Yep, I've always taken the sugar-free cranberry. That's partly why I bought tablets, so sugar or sweeteners weren't an issue, but it remained useless and, finally, irritant. I don't have a urologist, I haven't even discussed this with my GP yet, but I am at the end of taking 12 days of Amoxicillin, which so far has done nothing other than stop the worst of the pain and urgency, but it is still very irritated and I suspect as soon as I take the last tablet it will just come roaring back, probably worse than ever, now it appears to have resistance to Amoxycillin.

I think I will have to try and deal with my docs and see if I can get something better, although I'm running out of ideas with antibiotics! Thanks for your help.

[ON72 in reply to Chancery]

Hi, just to say if you can't see Prof Malones Lee via NHS or his team at Whittington Hospital at London, you can see him privately at Harley Street or Dr Anderson at the Focus clinic. I'm struggling with urinary frequency and some weird symptoms too. Best of luck.