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Hi im new here and need some advice!?

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Wyoty
Posts: 3
Joined: Wed Sep 26, 2012 3:10 am

Hi im new here and need some advice!?

Post by Wyoty »

In December 2009 I started to develop severe mood swings and low mood.
This was causing strain at work and within my personal relationships.
One night during an argument. I passed out and woke up with trauma to my face and head.
I was admitted to A&E and was told by the doctor there that it was an epileptic seizure.
Further tests would be needed to determine what was happening. At this point I avoided medical professionals and
suffered in silence at home. I had lost my two jobs, my flat, and my relationship at that time ended.
I also had to take a leave of abcence from University.

I suffered from various symptoms. These symptoms were varied and confusing. A full list can be seen attached.(APDX 1)
During this time I tried to seek employment and was homeless with Stirling Council.
After about 8 months of not really getting anywhere, I approached my GP and told him that I was avoidant of the NHS
and that I had tried to get by on my own, but that it simply wasnt working and that I needed to be medically evaluated,
he booked me in with a neurologist to be tested for epilepsy. He offered me antidepressants and anti-anxiety medication
but I refused (further details can be found in APDX2). His advice continued, that I should be signed off from work,
go on full benefits, and take time to rehabilitate myself. He advised that I could do a easier course at college or do some
voluntary work. It took a further 8 months to be seen by a neurologist.

The results from the neurolgist were dissapointing one EEG was done, no other tests were carried out, he said that it was
unlikley I had epilespy and advised of possible dissasociation or genralised anxiety disorder.
At this point again I was offered antidepressants and anti-anxiety medication again.
This time I thought maybe I should take this medication, but again I refused after a lot of thought. I knew that I
did dip in and out of depression and was sometimes anxious, but not enough to justify this medication.
For me it was like treating the effect the symptoms were having on me, but not treating the underlying cause
which was still to be determined.

It was at this point that I remembered the results of a blood test I had had. Vitamin B12 was mentioned in passing by a
nurse but nothing was made of it. I approached my GP again and as we discussed things, I asked him
"what about the Vitamin B12", his reply was "what about it?" and I stated that I had heard in passing that it was low.
He checked the files and found the results. He seemed to be amazed, and suddenly spoke as if this was the missing link,
the holy grail as he put it to all my problems. he ordered more bloods to be taken, but at this point
I went into avoidance again. (read APDX 3 to find out why) It took me several months to approach the doctor again.
In this time i read about vitamin b12 deficiency and it made sense, all the symptoms seemed to fit.
But it wasnt really beleivable to me as before I had been made to belive it was Epilepsy and it turned out not to be even
though all the symptoms fitted then. So what made this any different. I felt like the doctors were grasping at straws and
did not really have any idea of what was going on.

Eventually I approached the doctor again and we ordered repeat blood tests and said that if my b12 was low I would try the
Vitaomin b12 shots. Mostly this was due to the fact i felt a slight pick up in my health when i started taking water soluble
vitamins.

Then what happened and I didnt know if it was a side effect of taking the vitamins but my stomach started to swell, bloat,
and distend painfully. I had heartburn and indigestion. The constipation then started and i hadnt been to the toilet for a
normal stool in about 3 months. Mostly just a little diareahh here and there. I took many different types of natural suppliments to
try and move my bowels. The doctor said it was IBS and gave me movicol and lactolose, these just made the problems worse. The pain was
unbarable and eventually I called NHS direct for advice. The gave me an emergency appointment and the doctor I spoke to advised of
dyspesia, stomach ulcers and a possible obstruction. He gave me medication. Over the weekend that I took them, I started to have
normal bowel movements everyday, my energy levels went up substantially. The doctor also ordered a stool sample.

The results came back and I was told that it was positive for H PYLORI.
Within a few days I was put on antibiotics and treated for it. I am writing this half way through my course of this treatment.

I started to read about it, I questioned the relationship between H Pylori and Vitamin B12 deficency or pernicious anemia. The doctor
I spoke to said there was no relationship. From reading various articles and journals I know this to be false. That there is a relationship!?

I would like to peice this puzzle together finally. This is what I beleive is going on.

H pylori caused Vitamin B12 to not be absorbed, this led to pernicious anemia which over time lead to the symptoms associated with the condition and
caused me to collapse and have the trauma to the head. The symptoms in my opinion mimicd epilepsy becuase of the associated nerve damage.

DOES THIS SOUND PLAUSIBLE??


Over the years I have been told I was just depressed and had IBS - i refused treatment for both as I knew deep down that was not right.

Within a week of being treated for stomach acid overproduction and H pylori treatment as well as vitamin B12 shots, I have REALLY returned to near enough full health.
It has taken just under 3 years to get to this point. 3 years of being told I was just depressed. YES I was depressed at times but only becuase I was so ill. NOT ABLE
to live a normal life. Doctors need to start looking for the underlying causes of Ill health and not just treat a symptoms or just dish out the antidepressants.
I have had enough of being dismissed. The results and conclusion here really justify to me that I was correct to stick to my principles and yes
I may have been avoidant at times, but i simply put this down to a lack of faith in the system.

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Hi im new here and need some advice!?

Post by Helico_expert »

Thank you very much for sharing your story. The relationship of vitamin B12 deficiency and H. pylori infection had been suggested for many years but until today, no solid evidence can proof as such. Reason behind is because more than 50% of the world population is infected and only a small percentage of people suffer from B12 deficiency (or it has been ignored and under-reported).

I think this your story is important to this forum and I am glad that your H. pylori treatment and B12 shot able to bring back your life. I like to suggest a confirmation test one month later after your current treatment. We want to make sure your current treatment completely eradicates the nasty H. pylori.

Wyoty
Posts: 3
Joined: Wed Sep 26, 2012 3:10 am

Re: Hi im new here and need some advice!?

Post by Wyoty »

Your welcome I've felt like I needed to share it with someone. Thanks for your reply.

I now strongly believe that there is a relationship of vitamin B12 deficiency and H. pylori infection. It is a bit disheartening that there isn't more proof to go on.
From my understanding the H.pylori infection causes damage to the stomach, which would then lead to various other problems? one of which may be vitamin b12 deficiency in some cases, but clearly not enough for it to be looked at more? someone mentioned the intrinsic factor or something, but I don't know what this means here.

I know that 50% of the world population is infected, but from that how many show symptoms and get very ill?
B12 deficiency in the UK has recently become more published and getting more attention. My doctor said H.pylori is very common but only a handful develop severe complications. He said we can't know if we can blame the H.pylori for the B12 deficiency. But then said the b12 deficiency was caused by the damage to the stomach. which H.pylori COULD have caused. So yes i'm confused at the logic here.

Oh and i am having my follow up check, the doctor said it wouldn't be needed. But from what I've read i think yet again he is giving the wrong information. He said that the course of antibiotics would completely eradicate it and no need for further testing.

For now I am glad that I have found out what treatment combination I need and that it is working. I am just a tad irritated that I have been told it was all in my head all these years, when the solution seems to have been come to so simply eventually!

Helico_expert
Site Admin
Posts: 4600
Joined: Wed Mar 02, 2011 7:20 am

Re: Hi im new here and need some advice!?

Post by Helico_expert »

I suspect it has something to do with host genetic too. Perhaps certain ethnic population or groups of people or people who carry certain genes, with the combination of H. pylori, leads to B12 deficiency. But that's just my thought.

About the reconfirmation of your treatment, I strongly suggest that you should get a post treatment check. It's not hard, not terribly expensive and should be done to get a peace of mind. At least 5 or 10 yrs down the track when you suffer another stomach attack (touch wood), you know it has nothing to do with this infection.

Wyoty
Posts: 3
Joined: Wed Sep 26, 2012 3:10 am

Re: Hi im new here and need some advice!?

Post by Wyoty »

Yeah I thought this as well it seems to effect people in so many different ways and I suspect that it would be down to genetics.
and comorbitity I guess that's what makes it difficult to reach a quick diagnosis, to understand and treat.

Yeah thanks ill make sure he checks it again, there's no way I want to be going through all this again :)

Lucky
Posts: 1
Joined: Thu Mar 21, 2019 4:50 pm

Re: Hi im new here and need some advice!?

Post by Lucky »

Wyoti, I hope you're still checking this forum occasionally, your story sounds so like mine. The main difference seems to be the length of time of suffering. It is now around TWELVE years since I first became ill, and not a single GP(I'm British too!) has listened to a word I've said. To cut a very long story short, 12 years ago I caught Guardia, a stomach parasite, and became really ill. My daughter and dog caught it too, but I don't know who got it first!! My doctor tested myself and my daughter, a stool test, which came back negative. He refused to do any more tests, although I believe Guardia is notorious for not showing up every time, and 3 tests in succession are supposed to be done before it is ruled out. My dogs vet was not so ridiculous, and Guardia was found in my dog, and subsequently treated with tablets. Myself and my daughter were not so lucky, and basically had to try and sort ourselves out. As the weeks went by is when I think the H. Pylori started taking over. I had permanent upper stomach pain, constant diarrhea, total exhaustion and an aversion/allergy to milk and milk products which had never been the case. I felt terrible, and kept returning to the doctor's every few weeks. After a couple of months of this he said he was going to 'refer' me to the hospital because he couldn't help me. I asked him what he thought could be wrong and he had the cheek to say I could have irritable bowel syndrome or Chrones disease!!! You can imagine how I reacted! ANYWAY! I am droning on too much....... I got antibiotics online and picked up for a while, though any time I caught a bug it affected me more. I also had all the symptoms of Reactive Hypoglycemia, although I didn't realise this then.bAnd then, around 3 or 4 years ago, I had a very stressful and unhappy time. I was running my own stressful business, my Mum was ill and I was starting to feel ill again. My Mum came to live with us, and a few months later she passed away. Then 2 of my close friends died within a few months of each other. And then I discovered that my business partner was, and had been for many months, ripping me off in every way possible. I had a seizure, though this was thought to be syncope at the time, while alone at home - smashed my face up good. Since then, 3years ish! I have had about 4 or 5 more, though luckily they are mostly in bed and/or my Hubby has been there to help me. He says they are like Tonic Clonic ones and last a few seconds. I didn't tell a doctor. To cut a long story short, I am now, finally, better, for the most part. My stomach problems have all gone and I feel fabulous at last. It was seeing a certified herbalist and having treatments from him which helped. He gave me several herbal 'potions' and yay! they seem to have finally done the trick. That plus pumpkin seeds and no sugar! BUT I have still had an occasional seizure so decided to tell my doctor. He has booked me an appointment to see a Neurologist at the hospital next week, so I am very worried that this is going to be something I cannot help myself with, such as epilepsy. Incidentally, my blood pressure and pulse have been sky high for the past few years too.... Is this all anxiety?:I don't know.....It would be great if anyone had any answers, and I wish the best of luck to everyone out there struggling with their health.

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