e-coli infection and leaky gut

That's a relief! Get well(ish) soon!

 

Glad that you are back home, Graham. Hopefully they have it right this time.

 

Hurray! I hope you recover quickly now.

 

Very glad to ‘see’ you again @Graham .

Just the occasional from you, will do for now.

 

Thanks! I'm climbing out of the pit, but sleeping a lot. A long dose of two types of antibiotics at the moment, in the hope that the cysts on my liver are abscesses, and that the combined antibiotics will get rid of them. But at least I am getting a healthy diet now that I am home, with decent quantities. Hospitals get so little to spend on food, and that's daft.

 

it's good to hear from.you & that you're back home again @Graham! Fingers crossed these antibiotics do the trick.

Gentle

 

It was immensely frustrating to be visited by 30 or so different doctors, each clutching their piece of paper, asking the same questions and conducting more or less the same examinations. Then one of them would suggest something like procedure A or B, and disappear, never to be seen again. As for A or B, who knows?

The worst days were on a Wednesday night, third time in, when I was told that it was to be nil by mouth from midnight – an MRI scan with contrast dye. That meant no medication in the morning (nurses had to follow orders), so I dropped from 20mg of steroid to zero, and no antibiotic. Luckily the MRI was early, so I did catch up on the steroids by 11:30, but I was feeling pretty rough. I explained/complained about this to the doctor that I saw on Friday, and he seemed to get the message. He also, like other doctors, said that of course it didn't mean no steroids etc.

Guess what? Come Sunday night it was nil by mouth again. This time they wanted to do an ultrasound of my heart, using an endoscopy to dangle the transponder inside me. Still the nurses were unable to give me any steroids. But this time it wasn't until 3:00 in the afternoon when I was told that the doctors had changed their minds, but hadn't told anyone. I was in a real mess by then.

It's not that any of the staff were uncaring. Far from it. But they just seemed to think ME was about feeling a bit tired.

Following that, one of the more senior doctors came in, and I started to explain. I think he had just hurriedly looked up ME on the NICE guidelines, and, trying to be helpful, suggested that he could arrange for me to see a physio and get some GET. I don't think he knew what hit him! He did concede that perhaps I knew a bit more about it than he did.

This isn't meant to be a self-pitying moan, because so many people have had it so much worse. It's more a frustration that we still haven't made any inroads into established medical staff. They are a bit more wary of saying too much, but they still are fixated on fatigue, which to them means a bit tired.

 

I honestly don't think a card would work. What it needs is a combative approach, delivered in person to the key clinicians, so that they can each raise various objections (e.g. no tests, no approved treatment, etc.) and have them shot down in flames. It has to be someone with the confidence to carry it off, faced with some who still think of themselves as knowing much more than other folk.

I did pitch in about being involved in a lot of the in depth analysis, and having had a couple of studies published in my own name, but I was pretty brainfogged at the time, so I may not have been as clear as I "remember".

Perhaps, later, when this is over and I feel fitter, I will push a bit more. After having to face parents at governers' meetings ("Why aren't the maths results as good as the English results?", and no support from the head, who taught English and proudly proclaimed he know nothing of maths – along with the chair of the governors), I can do confident combative! Mind you, I don't think they would be interested for one moment.

 

Just sending belated best wishes to you @Graham. I hope things do get sorted for you in a not too traumatic way. Going to a doctor shouldn't be so horrific.

 

And belated very best wishes from me too, I do hope this latest treatment round does the business and leads you back to "normal".

 

The sad part of it all is that all of the medical folk I came across, along with all of the support staff, were actually very caring and committed: and, let's face it, taking risks to save my life. The hassle is just so unnecessary.

 

I would be worried about taking a combative approach with people who have the power to make your life worse.

 

I mean a scientifically combative approach, challenging them to justify their stance after providing evidence to the contrary. It is possible to be scientifically combative, but remain pleasant. Well, perhaps being pleasant is a bit more of a challenge for me, but I try.

 

I have no idea whether this is something where you approach through the hospital PALS or is it a Teaching Hospital? And do you do it with the support of the ME Association or CMRC Educational Group or individual doctors with M.E. eg Dr Nina...... but perhaps, when you are feeling an awful lot better, you could approach the hospital concerned with some very valid Constructive Criticism? You have your notes here to base it on. It’s just like giving feedback or completing a survey, after all.

Even without the M.E. & their complete lack of knowledge of an existing disease, ANY poorly patient would suffer by seeing 20-30 different people, asking the same questions. Surely they should have
a doctor taking a full history and be adding to it continuously, so they can be using those notes to inform new shifts at all the changeovers?

It would be interesting to know what that Senior Doctor thought of his experience talking to a patient who ‘knew what he was talking about’? I wonder whether he had enough time or the interest to go away and learn something new?

I always like that quote “please don’t confuse your 1 hour lecture on my medical condition, with my xxx (number of ) years of living with it!”

Gentle hugs @Graham , please try to stay out of trouble and stop visiting that hospital. Just get better!!

 

I do think this is well worth the effort, if you are well enough & able to during encounters.

I do believe that many doctors are quite sincere in their efforts to be helpful they just have no clue as to how badly their whole.profession has been mislead by the BPS crew and the NICE guidelines.

I think some doctors when faced with a situation where there is no quick fix, will try to find some quick win to help their patient feel better. I think this why some of them, despite having no real understanding of ME will wade in with some "helpful" advice based on little more than a quick google. They literally have no idea of the complexity of the disease and that it can be made much, much worse very easily.

It's very unfortunate that they were trying to be helpful when you are at your most vulnerable in feeling even more unwell than usual and being in one of the most ME unfriendly environments possible.

 

Best wishes @Graham. So sorry for what you are going through.

I´d like to highlight this study by Dr. M. Maes et.al as he has been working quite a lot with the gut issues in ME/CFS.
There are more studies to check up if you´d be interested. I guess you know about him already. Though, I couldn´t find, at a quick look, that MM was mentioned here before

https://pubmed.ncbi.nlm.nih.gov/19112401/


. 2008 Dec;29(6):902-10.
Normalization of Leaky Gut in Chronic Fatigue Syndrome (CFS) Is Accompanied by a Clinical Improvement: Effects of Age, Duration of Illness and the Translocation of LPS From Gram-Negative Bacteria
Michael Maes 1, Jean-Claude Leunis

 

This is mentioned here: https://www.s4me.info/threads/working-hypothesis-looking-for-feedback-thoughts.11945/#post-212175

 

Thanks @Helen . No, I hadn't heard of it: it's quite difficult to underestimate my ignorance in many matters! Step outside of PACE, limericks and maths, and I have the performance capabilities of a sloth.