My journey with melatonin, Helicobacter pylori, but no stomach ulcer...

I've had an odd collection of symptoms for years, only some of them have become a lot worse over the last couple of years. But it's been very hard to pin down any specific cause.

I'm autistic, I'm burned out, I was abused as a child, I was raised in a cult, I had overly controlling parents, I lost my brother when I was 15, I've had all kinds of trauma, I've had weird blood sugar issues, I've had mental health issues, I suffered three years of sleep deprivation whilst looking after a terminally ill relative, I've had a double pulmonary embolism, I lost my husband a few years ago, I find it hard to fall asleep and even harder to stay asleep, I suffered terrible guilt when I found a new partner and sold my old farm to start a new life, I've been through a major fire, I'm in some sort of autistic burnout... So, um, it's incredibly hard to look at a collection of symptoms and figure out if they are solvable or if I just have to learn to put up with them or if they will sort themselves out given rest and recuperation.

But they haven't, and some have just gotten worse and worse. For twenty years I'd been on a ketogenic diet to control my crazy blood sugars and keep my weight under control. Only two years ago it stopped working. I still don't know what changed, but I'd be incredibly tired and my brain would shut down sometimes to the point I couldn't even talk and had to communicate basic needs with sign language. For twenty years I'd sorted out my issues by dieting harder, and for twenty years it had worked. So I stuck ever more rigidly to my diet until I was so exhausted and incapable of doing pretty much anything that I gave in and ate a piece of bread. I felt better instantly, could speak again, but got awful gas.

OK, so change the diet to include carbohydrates again. Fair enough. So I did that and put up with the ensuing gas problems, which seemed to get progressively worse no matter what I ate. I put on a ton of weight again, but at least I was sort of functional. Then there was the fire, which unlike all the previous stressors which were long, drawn out affairs, this was a sudden and drastic life-changing sort followed by classic patterns of trauma. I recovered from it after a few months, but the gas had become insane - my son says I sound like a snoring bear and I'm sure I could set some world belching records. My energy levels diminished to the point that I basically lived in bed but got up occasionally to attempt to Do Stuff. And the ability to think and write happened in occasional bursts that I would seize upon before switching off back into near mindlessness.

There were other odd things too. If I overdid things, my hands would go as cold as ice as exhaustion hit me, followed by the rest of me. I still keep a heated pad by the bed to warm myself up again. My partner has learned to take me by the hand if I look off colour to see if I'm crashing down again. If I go walking (which I haven't this year except twice the 100 metres/yards to my son's place and back) my heart rate will suddenly decide to shoot up and I'll get insanely out of breath, so I've set my sport watch to alert me if my pulse hits 120 so I can rest up. But the odd thing which never made sense to me was that when my heart rate shoots up and I start puffing and panting like I'm fit to burst, but I check my oxygen levels which my amazing sport watch can do, my oxygen levels are around 99 or 100%. Even higher than the usual 96 or 97 %. Which made no sense to me.

If I'm on my feet bumbling around doing chores and am nearing the end of my energy levels (about ten minutes), if I don't stop immediately I end up running on such a short fuse that I will explode at the slightest word said that wasn't what I expected, or occasionally something will trigger complete paranoia and I end up hiding myself away refusing to go outside until I've stopped blaming anyone around me for anything that might or might not have happened. All the while dealing with ever-increasing weight, insomnia and insane amounts of gas.  

I'd been using melatonin for years to help me fall asleep at night. It doesn't keep me asleep, but at least I don't lie awake for two hours failing to fall asleep in the first place. I don't think you're supposed to use it for that long, but every time I tried to wean myself off it I'd be ok the first night but lie awake for hours failing to fall asleep the next and any subsequent nights. So I'd always gone back to taking a 1g capsule of melatonin every evening at bedtime. Until last December. When I finally found I could fall asleep without it, so I stopped taking them, because I hate taking any kind of medication.

And my energy levels plummeted more. My heart rate would get insane just standing up for a few minutes. The belching and bloating simply wasn't funny any more and I got desperate.

Then for some reason the subject of stomach ulcers cropped up and I wondered if I had an H pylori infection that hadn't caused any stomach ulcers yet. I checked the symptoms and researched what H pylori actually did in the body and it seemed to fit. So I took myself off for a test and came back with a very, very positive result!

I'll write up more in another post. Soon!

Sending out a ginormous hug just for you!!

Peace

Most bacteria can't survive in the stomach because of the acid that the stomach produces to help in the breakdown of food. But H pylori has a secret weapon. It scavenges urea and secretes an enzyme caused urease which breaks down the urea into ammonia and carbon dioxide. The ammonia neutralises the stomach acid making it a much more hospitable place for the H pylori bacteria to thrive.  And the carbon dioxide that is released as a by-product bloats up your stomach, most of which eventually escapes via belching.

Some, however, also gets absorbed through the wall of the stomach into the bloodstream. The test for an H pylori infection involves swallowing a capsule containing urea made with radioactive C13, which serves as a marker. The capsule is taken after fasting, which seems to mean that your stomach has produced a whole load of acid as it's expecting food to arrive soon. The H pylori bacteria aren't happy with all the acid and go to work on the urea you've just supplied them with, releasing copious amounts of carbon dioxide within minutes. Ten minutes after swallowing the capsule, you are presented with a special bag to blow into, the contents of which can somehow be analysed to see if it contains radioactive C13 carbon. If it does, then it's come from carbon dioxide that has been absorbed from the stomach that has just been fed the marked urea, which has then been absorbed into the blood stream and removed via the lungs into the breath you've just blown out into the little bag.

My result was 116 cpm, though I admit I have no idea what those units are. A positive result is anything over 25 cpm and I understand that most people with an active infection that needs treating have around 50 or so cpm. So mine is high!

Which presumably means the amount of carbon dioxide in my blood is high. We think of breathing as a way to supply oxygen, but it also serves to get rid of the surplus carbon dioxide we produce. Only it can only get rid of so much at a time. When the level is high, the body reacts in similar ways to when the oxygen level is low - it pumps the blood around faster and increases the breathing rate to shift it out of the system.  Not really surprising I would get out of breath every time I tried to do anything - I was already carrying too much carbon dioxide in my blood and I didn't have the reserves to carry any extra that would be produced by exercising.

Everything seemed to fit, so I trotted along to talk to my doctor to ask about antibiotics as I really, really wanted to get rid of this infection.

My doctor, who spoke about three words of English, didn't know me from Adam as I avoid medical stuff as a rule. I showed him the positive test and some notes I'd written out in case my words vanished again when I tried to speak to him, and he wrote me a quick prescription to go and have an endoscopy done to see if there was any damage to my stomach, as H pylori causes stomach ulcers.

I didn't feel I needed the endoscopy as I knew I had the infection, I knew I needed to sort it out, and I was pretty sure I didn't have ulcers, yet, because there was absolutely no pain in my stomach. Just the silly amounts of gas. But I figured they had boxes to tick before prescribing antibiotics so I booked an appointment. The first one I could get was in a few week's time so in the meantime I had to go home and research what else could be done to control the infection and the symptoms while I waited.

To be continued...

The first thing I did was to research natural treatments for H pylori.

Turmeric was one that caught my attention. I don't like the taste of turmeric but I usually keep some in anyway. I mentioned it to Austin and he pointed out that it does taste awful unless it's cooked enough. Which might explain my problem as I tended to add it to things when they were nearly ready to serve. I'd already discovered that rice was probably the least problematic food for me, so it became the mainstay of my diet for the next few weeks. It's also exceptionally easy for me to cook as I have the hay box and a lovely little enamel saucepan which is the perfect size for cooking a batch of rice up to keep in the fridge for throwing together quick meals. It only takes a couple of minutes to measure a cup rice into the pan, add as much turmeric as I think I'll be able to cope with and a sprinkle of black pepper, stir them up together thoroughly then add the water, bring to the boil for a minute so that it's all well up to temperature, then pop it into the haybox all nice and snug. It sits there for an hour or three until I'm ready to fetch it in. And it's always perfectly cooked and hasn't stuck to the pan. More to the point, if I only have ten minutes standing-up time, I can get the rice on in less than that and still have enough energy to do another chore in the kitchen before retreating to my bed. Turmeric was the one thing that I'm convinced seemed to help keep the H pylori under control!

Licorice root was another thing I tried. I'd make tea with it and put a bit of honey in, because honey was recommended too. it was very nice but I was never convinced it actually helped. I'd also drink iced green tea.

I also increased cabbage consumption, and ate home made yogurt and fermented cabbage. I'm not convinced they helped either and ultimately I dropped the yogurt as I was becoming more and more sensitive to anything acidic in my stomach.

I didn't chase other remedies like mastic gum because it seemed terribly expensive and would probably take ages to arrive if I tried ordering it online. By which time I'd be due for the endoscopy after which I could have the antibiotics.

OK, so I had a plan of what remedies I could try, but I thought there might also be stuff I could do to control the severity of the symptoms. It seemed to me that acid production in the stomach was the trigger for all the carbon dioxide production. I can't find the link I originally used, but factors that trigger it include -

- the arrival of food in the stomach
- the expectation of the arrival of food in the stomach
- the stomach being full
- stress

OK, so if I want to reduce the problems, I need to reduce how much stomach acid is produced, and probably also how often, to give me a chance to recover between gassy sessions.

So, no stress. For me that means I'm allowed to go full hermit mode and not travel anywhere unless absolutely necessary. I had noticed that I get even gassier than normal if I'm out in the car.

I have to eat, so I can't do much about acid production when food hits the stomach. But I can reduce the frequency of eating, and be vigilant about not snacking. So we went strictly three meals a day.

The expectation of food also triggers acid production, so those three meals a day were to be at rigidly set times until my body learned that it was only ever going to get fed at those times and there was no need to produce acid at any other time. It took me a week or so for the training to take effect, and in the meantime my stomach made its displeasure felt, but in the end this was worth it.

And the size of meals was reduced, because a full stomach triggers acid production. So no filling up on a huge plates of yummy veggies - smaller, more nutrient packed meals became the order of the day.

I decided against probiotics because I didn't really see how they could help as H pylori is pretty much the only bacteria that can survive in the stomach so adding others didn't seem likely to help. And in any case I'd pretty well decided that I was going to go for the antibiotics, which would wipe them all out again anyway. I did however source a supply of them and popped the bottle in the fridge ready to replace the good bacteria after I'd finished the antibiotic course.

And then I waited. I was also learning not to trigger the worst of my symptoms by pushing myself too hard. So no standing up for longer than I could comfortably manage. I felt pretty pathetic, but it was only for a couple of weeks then things should improve.

The night before the endoscopy I was a little anxious. Not nervous, but a bit fired up in anticipation. I was concerned that I wouldn't fall asleep and decided to take a melatonin tablet, just in case. But then I thought I should check in case there were any contraindications between melatonin and H pylori infection.

And this is where I hit a little revelation - an internet search led me to discover that the stomach lining produces melatonin, which triggers the production of mucous. This mucous protects the stomach and makes it difficult for those nasty little H pylori bacteria to screw themselves into the stomach wall, which is where they cause most damage, potentially triggering stomach cancer and ulcers. So those sneaky H pylori have yet another secret weapon - they can stop melatonin being produced, which stops the stomach producing mucous to defend itself.

And what I had been doing for the last six years? Yup, taking melatonin every single night to help me sleep. And in the process, also allowing my stomach lining to produce the mucous it needed to stop those nasty bugs burrowing into my flesh and causing stomach ulcers. I'd accidentally protected my stomach. But it also meant that I hadn't had the usual symptoms which would have alerted me to the infection, which meant that now the infection was totally out of control and I was getting symptoms such as the cold hands and the anxiety and the paranoia which usually only hit during extremely high levels of carbon dioxide in the blood, otherwise known as hypercapnia, and tend to be associated with diving rather than just sitting around doing not very much at all.

And when had the symptoms become so intense that I was finally driven to discover the cause? In the month following me giving up the melatonin.

I refused to believe that was a coincidence!

But anyway, it was my bedtime and I had the endoscopy the next morning so I took the melatonin capsule, having established that it was a Good Thing to take, and drifted off to sleep.

To be continued...

No breakfast for me the next morning as I had to be fasted for the endoscopy, and my stomach was churning out acid in anticipation, causing the usual gassy side-effects. I was greatly looking forward to getting this done so I could move forward with the antibiotics, and also interested to see what they would find out as I'd had no symptoms of an ulcer and was wondering if there was any sign of anything incipient going on in there. I was also looking forward to finding out which of my weird and wonderful symptoms would clear up after the antibiotics, which might help me understand what the H pylori bacteria had caused in the first place.

Only it was not to be.

I'd opted for the 'without sedation' option as it was going to cost the equivalent of a week's money to pay for the sedation and I was sure I wouldn't need it.

I was wrong. Very wrong. They tried twice and I discovered that I had what might be described as a very strong gag reflex. There was no way my body was going to allow that thing past a certain point in my throat. They were ready to give up after the second attempt, sounding very disappointed and trying not to let it show. I begged them to try a third time but absolutely no way - my whole being rebelled at being choked to death and there was absolutely nothing I could do to persuade myself that it was ok and to just relax through it. So I hung my head in shame, made my apologies, and went and had late breakfast instead.

I was pretty stressed out by this point, not surprisingly, so we thought we'd stop off at the doctor's office on the way back to see if he'd just accept that I needed antibiotics and prescribe me some. I was a complete mess by this point and was crazily out of breath by the time I spoke with the receptionist. The doctor had no available appointments that day but did come out and talk to me very briefly, told me he couldn't give me antibiotics until I'd had the endoscopy and to make an appointment to talk with him properly. The receptionist was very concerned about my condition and suggested I went to the emergency ward in the nearest hospital, and made an appointment for me to talk with the doctor in a couple of weeks time.  I checked my oxygen levels and it was 100%, and I figured the first thing they'd try to do at the hospital would be to give me oxygen and fail to understand what was happening, and I know from experience that what I really need is to go home where I feel safe and put my feet up and chill out. The feet-up thing seems crucial as I never recover unless my feet are up. I guess the blood flows more easily like that. So I went home and spent the rest of the day in bed, where I recovered quite nicely.

So, back on my rigid three small meals a day, no snacks, no overexerting myself, no stress routine for another few weeks. I also developed a stupid little bit of a sore throat and a silly little cough during that time, which didn't cause any problems but never developed into a full cold and never seemed to go away either.

When I got to speak with the doctor again. He said that I'd need to try again, with sedation this time and wrote me a prescription. He also wrote prescriptions for various blood tests, an ultrasound, urine tests, chest x-rays and an ECG and told me he wasn't prepared to speak to me again until I had ALL the results! By this time I was quite convinced that I was never going to return to anything like full health without the antibiotics so I agreed. And went off to book the appointments. Most could be booked quite quickly, but it was another month before they could fit me in for an endoscopy.

I was sent the results of the various tests by email. Something odd about the ultrasound. Blood tests normal except for cholesterol. And stuff that looked dodgy but I couldn't interpret on the ECG. Then eventually I could go for the second attempt at the endoscopy, paid the extra for the sedation, slept soundly through the whole thing and woke up peacefully on the gurney when it was all over.

I spoke to the doctor who had performed it and mentioned the H pylori to him, and he gently assured me that no, there was absolutely no sign whatsoever that I had that. Which I knew was wrong as I'd had the test done, but a combination of my poor language skills and the fact I wasn't fully conscious meant that I never managed to explain it to him.

When the official results arrived by email though, it said there were erosions to my oesophagus which suggested Barrett's. There is a photo here for anyone who's brave or foolish enough to want to see what it looks like.

I didn't like the sound of Barrett's, but I also didn't believe it. My take on the situation was that there was no sign of damage in my stomach due to the H pylori because I'd accidentally prevented it by taking a melatonin capsule every night for the last six years. At least, until the weeks before my symptoms got too bad and I'd made the connection and started taking it again. But of course if you take a capsule, the melatonin lands in the stomach and never touches the oesophagus. So I decided I needed to find a way to get the melatonin to stick to my throat as long as possible because I really wanted to believe that the damage there was because of the H pylori spreading up my throat, not some weird and scary thing called Barrett's.

And this was my solution...



One duck-shaped salt pot, with half a teaspoon of honey, into which I mixed half of the contents of a capsule that provided 1.7g of melatonin. Then after breakfast and before going to sleep I would dose myself by sticking my finger in the medicated honey and put it on the back of my tongue and let it drip down as slowly as possible in the hope that it would trigger the lining of the oesophagus to produce the mucous it needed to protect itself from the H pylori. It really is a very nice way to take medicine!  Not only that, the sore throat and coughing diminished and vanished completely by the time I'd managed to get to see the doctor again a couple of weeks later. Of course, without another endoscopy I can't actually know that the damage has gone, but for now I'm happy to believe it.

And, when I did finally get to see the doctor armed with all my bits of paper with the results of the tests he'd wanted me to take, he did finally give me the antibiotics.

But not until he'd had a jolly good look at the results of the ECG and wanted to know how long ago I'd had the heart attack.

Which was news to me as I didn't know I'd had one. And it does rather throw a spanner in the works when it comes to finding out what the antibiotics can reverse because while it turns out that H pylori can cause heart problems, I'm pretty sure that eradicating it isn't going to undo all the damage caused by a heart attack.

But anyway, I did finally have my prescription. We visited the pharmacy on the way home and I retreated to my room armed with a great big bag of tablets to try to get my head around and figure out which ones had to be taken when, and when they had to fit around eating because some of them had to be taken fasted.

To be continued...

Compassion for all your difficulties and hope you feel better!

I am surprised that apple cider vinegar isn’t a remedy. If the H pylori feeds on stomach acid, and makes the stomach more alkaline in order to survive, then why not provide another acid which isn’t urea-containing in order to keep the stomach from producing its own acid while decreasing the habitat for the bacteria? These are all my uneducated speculations though.

Edit: A quick search says it can be irritating in H pylori. But other sources say it may help. This is skimming off the scum of the internet so I can’t vouch for any of them.

Maieshe Ljin wrote:I am surprised that apple cider vinegar isn’t a remedy. If the H pylori feeds on stomach acid, and makes the stomach more alkaline in order to survive, then why not provide another acid which isn’t urea-containing in order to keep the stomach from producing its own acid while decreasing the habitat for the bacteria? These are all my uneducated speculations though.

I don't think that stomach acid contains urea. I think the H pylori scavenge it from all around. It's one of the breakdown products of proteins and I guess there's a little bit pretty much everywhere in the body, although I thought the first stage was ammonia and it only gets converted into urea in the liver. I daresay it's not that straightforward though. The kidneys filter the blood to extract it, so I guess it there's usually some in the blood where it can be scavenged before the body gets rid of it.

I'm also not sure that increasing the acidity of the stomach would stop the stomach producing its own. I didn't see pH listed as a trigger for gastric acid secretion, only things that suggested the acid was needed now, like the stomach being full, or eating, or it was dinner-time. In which case adding apple cider vinegar would just trigger more H pylori activity.

From my own point of view, I can't face any acidic food right now, and haven't for several weeks. My whole stomach goes into a knot at the thought of it. No fruit, no yogurt. Except bananas. I used to have fruit and yogurt daily, now it's a banana smoothie instead. I have some raw goat's milk booked for the day after I finish the antibiotics so I can make a very gentle yogurt and reintroduce it, and some good bacteria, back into my system. And there's a pot of probiotics sitting in the fridge waiting for me, too. And some sauerkraut. I can't face it yet though...

Edit to add that I would keep a water bottle by my side with a quarter of a teaspoon of bicarbonate of soda in, which is alkaline, and sip that after meals and at any time I'd feel the bloating start up. It would help. Not fix, but help. It would work best taken way before the symptoms were apparent though and wasn't reliable.

My opinion is that people having symptoms should do a DNA test and run it through geneticgenie website to find your genetic predispositions.

I found that I am MTHFR and several other things.  

Ahhhhhhhh, shucks darn, thanks for the PIE.  I will accept your gift in the Spirit it was given.  I hope my hug was not too uncomfortable due to my still being so scrawny after the cancer thingy.

With your permission I will be most happy to offer a prayer for your health and well being.  

I am not Christian but a PAGAN, a believer in the old ways.  If you are OK with this, just let me know.


Peace

So so sorry to learn of all your health issues and hope that you are able to find relief soon, if not a cure.

If you are not already growing saffron, are you able to obtain some corms? Both the stigma and petals can be used medicinally to aid  sleep and research has shown numerous other health benefits.

I use a pinch of the stigmas in hot water to make tea and combine the dried petals with lemon verbena leaves (aloysia citrodora) also as a sleep aid tea.

Healing wishes to you.