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Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Thu Mar 25, 2021 8:48 pm
by webslave
With a strong sense of deja vu, I need to point out that once more you, the UCPPS patient, are at risk from people in the medical profession who simply, in my opinion, do not know what they are doing.

Here is a sample of them:
  1. James Malone-Lee, (see his prolific Twitter account full of wild claims), a retired 70+ year old ex-army doctor and geriatrician, who has a lucrative private practice in Harley Street, post-NHS, treating people with urinary tract "infections". Malone-Lee sees a bug in every bladder and is regarded with disdain by many people in the medical profession, who think he's a quack.1
  2. Kiren Gill, a gynaecologist and student of Malone-Lee's, who works alongside Malone-Lee in his clinic, and who wrote her 2016 thesis on "The role of bacterial infection and inflammation in the generation of overactive bladder symptoms."
  3. Ruth Kriz, an old nurse who has had IC for decades, and now takes antibiotics almost continuously. She is "slowly recovering", she says (update: she now says she has ceased taking antibiotics). She has become a Messiah for people with IC who have an "idée fixe" about infection, and she liberally dispenses her cockeyed advice in the role of physician. So Kriz is a nurse who thinks she's a doctor (and even a researcher) who has "discovered" the link between IC/BPS and bacteria, biofilms, etc. It's the UCPPS world's equivalent of QAnon, that's how dumb this is.
  4. Stewart Bundrick, a uro in Shreveport, La, treats IC patients thusly: "He does DNA urine tests and treats with long-term high dose antibiotics."
  5. Others cashing in on this scam: Michael Hsieh (US), and from the UK: Ased Ali, Sohier Elneil, Rajvinder Khasriya, Vikram Khullar, Catriona Anderson

Malone-Lee and his acolyte Kiren Gill are behind a big push in the UK to label OAB as an 'embedded infection'. This is just the latest iteration of something I have seen several times over the last 30 years, starting with people like Paul Fugazzotto (now deceased), a microbiologist who ran a nice little racket from his backyard shed, getting people to mail in their urine samples (a week at room temperature!) for extensive "testing" in his homemade lab. Of course, he always found "infections" and his victims clients were then urged to seek months of antibiotics treatment. Ruth Kriz is a similar figure. Unsurprisingly, she and Fugazzotto were a team. She's also a big promoter of a company I consider to be scammers, MicrogenDx.

These mavericks all announce the "discovery" that IC, OAB or CPPS is infectious in origin, and must be treated with marathon courses of antibiotics.

None of these self-anointed Einsteins knows or admits antibiotics are anti-inflammatories. None of them understands that the urothelium can be inflamed by nerves and not only microbes. And none of them knows (or admits) that a disturbed urobiome can be an effect and not a cause of dysfunction.

Kiren Gill, a Barry Marshall wannabe (Barry Marshall was the Australian H.pylori-stomach ulcer link discoverer), has an 'open access' (read: junky) paper out showing that 64% of women who had taken antibiotics for over a YEAR on average (and some much longer) were "very much better" (not cured). And another 20% were "much better". When you take into account the passing of time, the anti-inflammatory effect of antibiotics, and the placebo effect (worth around 30% of the "improved", according to studies on the placebo effect), the results are horrible. There should be 95%-100% cured, if these patients really had infections.

And then there's the attrition rate: people who are not being helped by the antibiotics, whose genetic makeup makes them less susceptible to the anti-inflammatory effects of antibiotics, drop out of such studies. Would you keep taking gut-disrupting antibiotics after several months of no improvement? No, nor would I. So the researcher is left with a core of patients that has self selected for success (if you can call feeling better but not cured a "success"). Of course, the drop-outs should be reported accurately, but were they? There is immense pressure to sweep drop-outs under the carpet, to fudge the numbers, for grant money and reputational reasons. To me, the study looks like a mess:
We tested the need for ongoing treatment empirically by stopping antimicrobial therapy. Treatment cessation was permitted once any reduction in LUTS had reached a steady state and pyuria had cleared. If symptoms recurred, the occurrence was documented and treatment reinstated. Thus, we stopped treatment 858 times and restarted 633 (74%) times on recurrence. Amongst patients with pain symptoms, relapses were associated with significantly higher pain scores (mean = 4.2; 95% CI = 3.6–4.9) compared with their symptoms at the beginning of treatment (mean = 2.7; 95% CI = 2.2–3.2) (p = 0.001).

Two hundred and twenty-five women completed treatment and were discharged. The median number of patient visits was five (mean = 6.6; SD = 5), with 40% of women discharged after four visits and 80% within ten. Mean treatment length was 383 days, with a significant variation in duration (SD = 347; 95% CI = 337–428). Some patients required long-term therapy, as attempts to withdraw treatment were associated with relapse.
The cardinal error Gill and Malone-Lee make is an elementary one: that inflammation must equal infection. Testing OAB patients, they found that OAB patients have more and different bacteria than controls, but the numbers of bacteria still fall well below the log score needed to denote infection. Well, no surprises here: the OAB cohort has an inflamed urothelial lining, so of course the microbiome will differ, and signs of inflammation will be present. To make the huge intellectual leap from pus cells and a differing microbiome to the conclusion that these differences denote infection is wildly unjustified. And when these people are treated with antimicrobials, they don't recover long term. And of course we'd know by now if OAB or IC or UCPPS was an infection. They've been using PCR on these patients for years, and using targeted antibiotics, without durable results.

And let's not forget the downside. What Gill reluctantly admits is that some of her patients developed serious Clostridium difficile bowel infections, and one spent months in hospital because of an antibiotic-induced eosinophilic pneumonitis. You know, trivial stuff like that.

There are many naïve patients who believe that any pus cell in the urine or other genitourinary tract secretions or excretions are signs of infection. But that's simply wrong; sterile pyuria (pus in urine) is common.

Some anecdotal accounts of Malone-Lee's clinic suggest blatant medical malpractice. A Facebook account relates the story of one of his patients who was diagnosed with embedded UTI based on the presence of 2 WBCs (pus cells) in the urine and was then prescribed long courses of antibiotics. As someone said: "Candidly, I'd like to know how many people walk in their doors and don't walk out with that diagnosis and a script for 6 months+ of antibiotics."

Other hallmarks that spike the Quack-O-Meter: He seems to relish the role of disruptor and outsider — just look at his twitter feed, full of self-aggrandizing codswallop. That's typical of quack psychology. What other signs of quackery can we see? Using well known criteria for quacks:

Malone-Lee Quack Score
Be wary of treatments that allegedly work for a wide variety of conditions.     ✅*
Practitioners who reject conventional treatment.✅
Practitioners who can’t provide a suitable answer as to why mainstream medicine or education has not adopted their methods, other than the wider world having competing interests.✅
* JML has now named IC/BPS, OAB, UCPPS and recurrent UTI as all treatable with his protocol. I may have missed some.

Quack score: 100% 🦆🦆🦆🦆🦆

Here are some quotes from Malone-Lee, absolutely dripping with irony:
If you must pontificate when you have not, and will not, read the science properly; then you should not complain when others make the mistake of assessing your output as the effluvia of a duck-brained bollocks mangle
The anti-science lobbyists exhibit cult-like behaviours that include a haughty contempt for those who disagree, as with postmodernist critical theorists. Of greater concern, is the poisonous harm they & their acolytes visit on terribly vulnerable people.
And Kriz should be removed from the nursing profession. Here's a quote:
In the four years that I have been doing the DNA testing of urine, I have found infection 100% of the time in my patients that have been diagnosed with Interstitial Cystitis. I don't have a single person who has an IC diagnosis that we haven't found infection.
She's using tests that identify bacteria over 99% of the time in ALL people (the urinary tract is not sterile) and using these results as "validation of infection", which is completely absurd. As someone said, she's using "bacteria" and "infection" interchangeably, and she's essentially trying to sterilize the urobiome with antibiotics, which is impossible.

Run. a. million. miles.

Postscript: I have contacted the British Association of Urological Surgeons (BAUS) to complain about Malone-Lee's activities, which are bringing disrepute upon them.

1 - "My GP googled Professor Malone-Lee and his ideas and turned to me and said “he looks like a quack that has a fancy address in Harley Street, I’m not going to refer you to him" ... s-stories/

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Mon Mar 29, 2021 11:05 am
by webslave
Malone-Lee read the above critique, and this is how he responded:

jml.png (12.16 KiB) Viewed 4511 times

He's clearly ignorant of papers like this:

Anti-inflammatory and Immunomodulatory Effects of Antibiotics and Their Use in Dermatology

And that's only in dermatology! You can imagine the vast anti-inflammatory applications in other areas of medicine. In treating IBD (CD and UC), some antibiotics are considered as potent as prednisone in their anti-inflammatory effects. Malone-Lee is dangerously ignorant of the effects of these agents. Wait till one of his patients dies. Maybe then they'll stop him 🙄

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Wed Mar 31, 2021 9:36 pm
by webslave
An update: Malone-Lee, having no cogent counter-arguments, has retreated into ad hominems against me, calling me a 'troll' and a 'rogue admin' with 'delusions of grandeur'. Water off a duck's back, James.


Significantly, he has not managed to get any study published in the top-ranked, highest impact urology journals (Eur Urol, J Urol, BJU Int.) about his long-term antibiotic treatment protocol.

In one of his studies, available as free text, you see a typical example of Malone-Lee's poor detective work and biases:
With the advent of more sensitive genomic technology, a number of groups have reported that the healthy bladder is not sterile, and that polymicrobial colonisation is the norm in both healthy and infected bladders. .... In patients with symptoms of UTI, the species dispersion is much wider than in asymptomatic controls. At this time it is not known what species of these mixes are responsible for the disease.
Notice how the leap is made from finding that patients with UTI symptoms LUTS have a wider range of colonisation to the automatic assumption that this is the cause of the LUTS? Malone-Lee does not even pause for a nanosecond to ponder the possibility that some host condition (e.g. inflammation) has provided a more suitable environment for this wider flora. He's no Sherlock Holmes, that's for sure!

And of course Occam's razor (the simplest explanation is usually the right one) makes short work of this problem. Which is more likely:
  1. A changed host environment is allowing a different urobiome to flourish OR
  2. People with LUTS but no discernible infection (by traditional measure) are still infected albeit with an ever-changing range of bugs at low colony counts but not quite as low as people without LUTS, who are similarly 'infected' with a smaller range of bugs and at slightly lower numbers.
But admitting this would ruin the whole game for the self-styled 'misunderstood and ignored prophets', who absolutely thrive on the idea that they alone are privy to the truth, they are the logical ones who do science "rigorously", while the rest of the medical world is blundering about in the dark, irrational, wrongheaded, befuddled, misdiagnosing and mistreating patients.
jml1.png (22.27 KiB) Viewed 4020 times
Only time will tell who is ultimately right on this topic, people like me who contend that sterile (by conventional testing) LUTS are host-driven, or the people saying that there are small numbers of bacteria hiding in cells of the urothelium and emerging to cause infections whenever they can. I think the scientific proof that many antibiotics are anti-inflammatory and immunomodulatory is beyond question, whereas the burden of proof that low numbers of bacteria that take advantage of inflamed or disturbed urothelial cells are in fact causing the LUTS rests heavily on the postulators of this theory, especially when the proposed treatment is so expensive, gut-disruptive, risky and very often results in temporary improvement only.

Watch this space....

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Sat Apr 03, 2021 1:45 am
by webslave
Meanwhile, Malone-Lee is wreaking havoc in the lives of his patients. He used to run a “pioneering” clinic at the Hornsey Central Health Centre in Crouch End using high dose antibiotics for extended periods. But when he seriously injured a second patient, Whittington Health, the NHS Trust responsible for the clinic, locked horns with Malone-Lee, and stopped him, closing his clinic.

Then [deeply misguided IMO] parents of one of his patients on long-term powerful antibiotics, a 6-year old 😲, sued and demanded the clinic reopen, which the Court allowed.
The Whittington’s medical director, Dr Richard Jennings, said the decision [to stop Malone-Lee] - which he described as a “judgement call” - followed a “safety alert” after a patient suffered serious organ damage thought to be caused by an antibiotic that was prescribed “at a higher dose than is recommended, for a much longer duration than is recommended”. This was said to mirror an incident six years ago. It emerged at the court hearing the trust had come to an agreement with Prof Malone-Lee yesterday, allowing him to reopen the clinic with “certain restrictions”.
Professor’s UTI clinic to reopen after Whittington is taken to the High Court

Obviously, the NHS restrictions were too much for him, so off to a private office in Harley Street he went. :sad2:

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Sat Apr 03, 2021 9:29 pm
by webslave
Yet another post on James Malone-Lee (JML) and the 'embedded infection' scam.

I've been travelling the internet in the last few days looking for statements by his patients and ex-patients. What I've found is quite interesting.
  • There is a cult-like following around JML. His followers and patients are fiercely loyal and intolerant of any dissent. One of his fanboys told me to "get off the internet, shithead". One Facebook group banned me for challenging his cult. A Reddit group deleted my posts.
  • Many of his patients make claims like "he saved my life", "I'm almost cured", "don't know what I'd have done without him", "searched for a cure for years until I found him", and so on. Invariably, they are still on antibiotics. You'll often hear "the Professor says I can stop taking them if my next test is clear"
  • Occasionally you'll find someone who is cured. Here's how it goes:
    1. Patient will feel cured and is allowed to stop taking the antibiotics, usually after months to years of treatment.
    2. Post appears on Reddit announcing the cure. Many high fives, congratulations, gloating, disbelief that the rest of the medical world does not "get it".
    3. Days, weeks or a few months later, patient returns to announce symptoms are back, provoking consternation from other true believers.
    4. Patient then deletes all his comments, probably because of embarrassment. You can trace what was said by the responses to his posts, such as "So when you stopped everything came back right away?"
    5. So the pattern is Success → Stop abx → Elation → Failure → Shame-embarrassment → Deletion
    6. Of course JML takes this in his stride: "People get better, and then they get a flare, and in fact it's an expected oscillation." Quacks are never wrong-footed, they always have a comeback.
Here's a video in which JML admits that he diagnoses on WBCs in urine and treats that. He doesn't even bother to treat based on bacteria, because (and this is telling), he found that the bacteria had no correlation to symptoms or treatment.
Malone-Lee wrote:Then we started to attract more patients who had long histories of chronic bladder pain, or you know the favorite diagnosis, interstitial cystitis. And applying the principles of fresh urine microscopy which you know was developed in, was nothing new, we were discovering that these people were very very similar to overactive bladder in the sense that there was an infection there. And the only signal was a pus cell signal in the urine but the most probable explanation for that is infection. So we treated them with antibiotics and they all got better, and then we stopped the antibiotics and they all got worse again, so we started them again. And you end up with this cycle of what we call evolutionary epistemology built up. And it was becoming increasingly clear to us that these patients were not going to function unless we were using really very protracted antibiotics. And I then became an incredibly worried person. Very very terrible times of deep worry because I was having to use extended courses of antibiotics. It was quite clear that the the cultures were half the time not telling us what's going on and I was desperately worried about causing side effects and so on and so forth. And then around about new data started to come available using S-ribosomal RNA studies of patients and normal controls. And it deeply shocked us to see that in fact the cultures were... If we, in the nine percent of patients, if we got a positive culture we were treating on the sensitivity, and we believed that that was the right thing. But her data showed that this is not right and that these bugs that they're isolating, it may well not be the cause. And one of the facts of it is, if you go by cultures, it's a Darwinian principle this, that what happens is the spectrum of the antibiotics that you use keep increasing they get gradually more powerful. So I remember this, in Christmas over the Christmas holiday, I decided right, we're going to abandon cultures absolutely. I came back and said well we're just not going to treat on cultures anymore, we're just going to go on the symptoms - the white blood cells. And we're going to try and stick to first generation urinary antibiotics. Source:
But WBCs are not always a sign of infection, they can denote inflammation without infection. You can have lots of WBCs and no infection (news to JML I'm sure). Start at 1:54
It's quite funny, at 13:55 he says that in 1889 Hiprex got invented "by the French". In fact it was discovered in 1859 by Aleksandr Butlerov, a Russian. As with most things, JML is not quite right.

I believe people like JML and the other characters named in this thread are strutting the stage right now because we are at an unusual time in the history of medicine. There is confusion in medicine at the moment because of the sudden ability (last decade) to sequence and amplify DNA and RNA cheaply and effectively, opening a window on the human microbiome. And we found bugs everywhere, in everyone. Suddenly we can blame microbes for every condition. The problem is that when we kill the microbes, the condition remains. We've seen this with bacteria over and over again.

The misunderstanding is, I suspect, a cause and effect problem. Opportunistic infections affect cancer patients, burn patients, HIV patients, etc. Those are serious infections that only occur because of a defect in the host, and they need to be treated. But something similar happens to the human microbiome with even the smallest changes in our bodies. In IC, mast cells are increased in the bladder lining, and the lining is often inflamed, and more permeable, more vulnerable, for reasons not associated with microbes. Some even develop ulcers. Epithelial cells are sloughed off in greater numbers. This is manna from heaven for elements of the microbiome, which can now get through the "mucosal firewall" and start increasing in number. Along come some researchers, find these increased numbers, and jump to an incorrect cause-and-effect conclusion.

The true causes of the inflammation can be very complex. For example, stress alone can inflame the bladder, that's been shown experimentally in rodents and cats. Damage to the spine can inflame urogenital tissues, that's been shown too. The most likely cause of UCPPS is much more complex than the simple paradigm people like JML pursue.

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Sat Apr 03, 2021 11:02 pm
by webslave
Going through JML's videos, I'm coming across some absolute corkers. Listen to this:
Malone-Lee: Now the thing is, the other point is that if you're sexually aroused you may not sense pain. So some people have sex and they don't get pain and then the shit hits the fan afterwards. And it's horrible, but learning from that we've learned to say sex does not do harm, it's all right. And we understand why sex can stir it up, and the reason being, is that during sex you can perturb the cells of the bladder because of the pressures in the pelvis and all that kind of thing. And if you perturb the cells the bugs that are colonizing those cells will get a fright. They'll wake up, start dividing. I mean if you give a bug a fright, it'll just start dividing. That's all they do. That's their one reaction to adversity - divide. And as a result they produce a whole lot of progeny that then burst out and charge for safety. It's like a murmuration of starlings really, a similar principle. So the way we address that, we'll be ready for it. You up your dose if you have sex and then you would increase the concentration in your urine and that will deal with the acute flare. Source:
😂 I cannot believe anyone takes this guy seriously. I've already proved that the post-ejaculatory pain men experience in UCPPS is a purely neuromuscular phenomenon, and if men consciously relax their pelvis during orgasm-ejaculation, no matter how vigorously their partner is grinding against them, the less the post-ejaculatory pain. It's really astonishing that an emeritus professor of medicine subscribes to the belief that sex jostles bacteria into dividing. Just insane.

This thread is a good example of Brandolini's Law: The amount of energy necessary to refute bullshit is an order of magnitude bigger than to produce it. 🙄

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Mon Apr 05, 2021 12:20 pm
by Sammy11
You are so very correct on the cult following with these UTI specialists. I've observed both Dr Bundrick and the Prof say some questionable things. But one dare not question it! Prof looks under a scope for WBC & epithelial cells and says “You've got an infection!”. There have been patients that have 0 counts but still feel horrid. So how can he go by that? I've seen patients in treatment for YEARS! He charges outrageous prices for visits & even to send him an email. Dr Bundrick another absolute quack. He thinks chronic UTI is related to eye colour. He has stated “People with green eyes are more susceptible”. He also gives out antibiotics like levaquin & Cipro to his patients, high doses for months to years, absolutely diabolical. No one questions it?! And if you try to, patients will attack you for it!

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Tue Apr 06, 2021 9:52 pm
by webslave

At 17:45 he says there are no links between IC and fibromyalgia or any other condition. This is clearly wrong, because numerous other studies have found an association.

Of course he does not want to see a link because it would suggest IC is a systemic disorder and invalidate his simplistic "bugs in bladder" thesis.

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Wed May 12, 2021 11:01 am
by webslave
Another detail needs to be added here. I recently received a Reddit DM from someone who has some experience of dealing with Malone-Lee. It's pretty interesting:
One of JML's most vocal advocates here on Reddit is not only mentally ill IMO, but also incredibly stupid. I'll tell you what happened, which TBH I was somewhat embarrassed about.

A guy came here months ago, claiming he was cured after getting an STI and then CPPS (well prostatitis) and seeing JML, his username is [User X]

I talked with him via DM and he said he needed 2 months of doxycycline and he was better. He told me he'd found out about JML through FB pages.

I made a fake FB and joined those pages and I also, stupidly booked in with JML out of desperation at the time.

When I looked through the FB pages, I saw a man who was clearly not better and was asking about all kinds of antibiotics. It seemed like he'd briefly gotten better, then relapsed and was desperate again.

I think I made a post and then he messaged me saying something like ‘yes this is definitely the right treatment' and told me the same story as the person on Reddit.

So I asked what his username was and he said [User X]. And I said, yeah we're already talking - but what's the deal, you said you're better and you aren't?

Then, long story short, he basically admitted he was lying because he had been better in the first place and he believed it's the right route for men with prostatitis to go down, so he wanted people to go and see ‘the doctor'. He sent me all kinds of weird voice notes, the guy is unstable. When I told him I was angry he lied to me, he started to insult me, calling me emotional and all other shit like that.

He's still on his JML/Bundrick crusade on Reddit. That's his entire persona. Then apparently he switches to levaquin and he's miraculously cured again! Although elsewhere I find evidence that he can't tolerate levaquin. Seems like Bundrick prescribed him that.

Meanwhile he's on Reddit nearly every single day spouting about how amazing JML and Bundrick are. Fucking mental behaviour.

I think he's basically trying to convince himself that he's on the right track by recruiting others TBH.

That was something I forgot to tell you, on the back of that guy lying to me, I booked in with JML. Then when I discovered he was lying, I felt like an idiot and cancelled my appointment. I cancelled my appointment saying I was concerned about Covid and they said they would give me an online appointment instead. So they would have prescribed antibiotics without even seeing me in person or even doing the so called test which ‘proves' there's an infection.
So two things:
  1. Do NOT trust people who tell you they have been cured of their "embedded infections" by long-term antibiotics. They want to use you as a guinea pig, or test subject. Do you want to be someone's crash test dummy? Why?

  2. JML is willing to prescribe long-term antibiotics to people diagnosed over the internet. I've heard and read this from several sources. If you have any test results that show WBCs (leukocytes), he will dose you up to the eyeballs with powerful antimicrobials, for months or years. If you are smart, this should be a HUGE warning flag for you. 😲

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Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Tue May 18, 2021 3:13 am
by canada604
This is terribly frightening to read... To think how so many people are being scammed and potentially risking life threatening/changing infections due to antibiotic overuse...

I type all this as a I pop my next dose of Cefixime!

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Wed Jul 21, 2021 9:17 pm
by webslave
JML recently denounced a patient who wanted to explore other forms of treatment, something that goes against the cult-like environment fostered by JML in his clinic. He took to Twitter, accusing a vague person of 'claiming victimhood' and 'rejecting science'. He then went on to post a graph of one of his female patients, 4 years in treatment on cefalexin and hiprex, and claimed she is "symptom free and flares almost gone". How can you be symptom-free if your flares are not completely gone? 🙄

He rounded off his Twitter attack on his own patient by saying that "treatment shuffling to speed recovery is harmful and doesn't work". As if 4 years of full dose antibiotics is normal and the only way!

I received this anonymous email about JML:
To top it all off (I took my time and checked) he bashes EVERY SINGLE existing alternative. Just search his Twitter feed and you'll find it. He bashes urovaccines, diet, herbs, D-mannose, phage therapy, nerve blocks, instillations (any, including antibiotic instills), fulguration, even bladder removal. He claims that 'seeds' of infection are planted all over the urinary tract so removing the bladder will only make it worse. His only solution? Endure it, be 'patient' and take antibiotics. The only treatments he does not bash are those that are still in development and so not direct competitors.

But the cherry on top? He does not only bash the widely accepted methods, he bashes all the other cUTI specialists whose protocols arguably have more sense than his (for example Vik Khullar only does antibiotics if he cultures and finds bacteria, switches the drugs and never does this for years).

I went through his twitter and found veiled tweets directed at each and every of these 'colleagues'. They never include names ofc but they chat crap about very specific methods that only these people use.

This is not even news, but many of those JML success stories I've read? Yeah I found out that they are still in treatment to this day. Blanket diagnosing every single LUTS patient with 'embedded UTI' and having them on an exact same protocol is suspicious af.

I do know he has some people off antibiotics for years. But there is NO long term data suggesting it's the antibiotics, and antibiotics alone that healed them. Maybe that was the case but if this guy genuinely cared he would've collected long term follow up data. Instead, he rants on Twitter. I have also seen multiple patients who relapsed after months or years coming off abx. All in all his method does not seem to be that breakthrough panacea that he tries to sell it as. And on Twitter he sounds deranged and scared that his clients will quit and seek help elsewhere.

I’ve heard of people being shouted at for questioning his treatment and that is a massive, massive red flag. I’d say if a patient wants to try the longer course of antibiotics route, they should avoid specifically this guy at all costs. Go to the other specialists. He is the only one who uses ONLY the antibiotics and doesn’t bother looking at any other part of the body/possible cause. All the others use supplements, physio, test for other causes. People will be better off.
And another report I saw on JML recently:
He becomes extremely abusive to patients who question his methods or consider alternatives/second opinions. Many people report that he refuses to answer difficult questions, is unable to provide RCT or long term data, and if a patient considers leaving he threatens them that they will be banned from the clinic and won't have access to medication anymore.

Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Wed Jul 21, 2021 10:45 pm
by webslave
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Re: Malone-Lee, Gill, Kriz — the "embedded infection" scam

Posted: Fri Oct 22, 2021 9:46 pm
by webslave
Interesting question and answer from Reddit:
Tron7000000 wrote:I went to Malone Lee’s clinic in London and spoke to one of his doctors. He told me that there was an embedded infection caught in biofilm. I’ve read his book on cystitis, and understand the theory.

But here’s the thing, their diagnosis was based on the presence of 10 wbc in my urine. I asked if it could be inflammation, the doctor said it could be, but as that’s not the theory that they subscribe to at the clinic and he would not discuss it. I asked for evidence of cure for male patients, some references or figures. He had nothing, and conceded that no one was cured yet, but suggested that I should be prepared to wait 18 months for a resolution during which time I should take a low grade antibiotic. If that didn’t work, then afterwards I should move up to doxycycline for 12 months, and so on.

I am actually open to the theory of embedded bacteria in biofilm, but if you can’t do anything more than tell me what I already know, and can’t provide evidence that men before me have been cured, you don’t really have a chance of convincing me that this approach is the best.

And here’s the thing, I’ve had this for over two years. I’ve been 99% improved for the past 3 months. I followed a lot of the hints and tips on here, and I’ve mostly learnt to move on with my life. Perhaps unsurprisingly, most of the symptoms have since passed.
Dartanian wrote:How did you recover?
Tron7000000 wrote:Stretches, sensible diet, a lot of exercise, meditation, PT (mixed feelings on that but it did help initially), and honestly just time/patience. I posted under an old user name previously - just check out the success stories (mine was one of them), you’ll find several on there that elaborate further.

The hardest thing is believing nothing is there, and keeping away from Reddit after 2 years of hovering on here (which is why I deleted my old account!). Clearly I still check back from time to time, but it probably isn’t a very healthy thing to keep doing.

I tested every way you can, MRIs, Ultrasounds etc, took multiple antibiotics - I spent thousands because I was racked with anxiety. My message to all is do what you can to confirm bacteria doesn’t exist, in fact do it 2 or 3 times for piece of mind, and then get on with the recovery tools (you have nothing to lose). Just don’t expect a solution overnight - it takes time.