Ok, so I’m kind of having a little chuckle to myself over this, because it’s going around and around in my mind the lengths I have gone to, to try and get answers.
First one was Bioresonance: I had to wear some strange necklace thingy that was plugged into a machine and this would tell me what was wrong with me. I spent over £300 on the test, a healing pendant and some tablets. The outcome was that I was allergic to cheese 🤣🤣🤣. I’m laughing now because I don’t eat much cheese but at the time I took it so seriously and honestly believed that cheese was my problem.
The 2nd thing I tried was kinesiology and I travelled miles for this one. I was told I was having issues caused by garlic 😳. I kind of left this approach knowing full well I had wasted my money as I hardly ever had garlic in my diet.
Anyway the purpose of this post is to try and make myself laugh about this whole process of getting a diagnosis and I am also wondering if any of you lovelies tried any of these? Or was it just me 🤷♀️🤔
Ps sometimes when I write these posts, the suggestive tags make me laugh : fungal infection 😃
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Lisalou19
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Hahaha.. Its good u can laugh about it. Fungal infectiona would be easier diagnosed and treated hey!.
I've had a better day, less pain 👍 but still very fatigued.. One day I'm going to count how many yawns I do!!!! 😂.
We are going on a wekend away tomorrow in the motor home my partner built.. Us the kids and the dog add a beach and relax (fingers crossed) enjoy your Easter x
I'm here but cannot sleep.. Every position I lie in is painful.. Lie on my tummy my knees hurt, lie on my side my hips and knees hurt, lie on my back my shoulder blades hurt. AND my partner is snoring his head off 😒. X
🤨 maybe you should try the amitripulene.i use that for a sleep aid and for pain . My knees and hips are a nightmare
X
Well it cost me nothing - but I went onto the pernicious anaemia HU to ask about possible atrophic gastritis recently. A very assertive chap told me that I should try to establish whether I have low stomach acid relating to atypical B12 deficiency. He linked me to a video showing a functional doc and his son conducting a burp test.
So I duly followed their instructions by drinking a glass of water with a quarter teaspoon of Bicarbonate of Soda before breakfast for three days in succession 2 weeks ago. The test is supposed to confirm low stomach acid if you don’t belch spontaneously and dramatically within 2 minutes of drinking it. I produced nothing so I announced to my husband that I clearly have low stomach acid. Against the advice of my gastro I dumped Ranitidine and PPI in favour of cider vinegar - which makes me retch!
This weekend, due to having a really fluey cold, I gave up the ban and succumbed to a high dose of naproxen and lidocaine patches on my cheeks with Ranitidine and Lansoperazole.
Meanwhile my hubby decided to run this experiment on himself along with my youngest son and his boyfriend. None of them belched. The boyfriend took a look at the bicarbonate and it turned out that it was past it’s sell by date by 6 years! X
Hi Twitchytoes...really sorry that this test didn't work for you...I suspect that the six year out-of-date soda bicarb may have been a contributing factor because (believe it or not)...it is a recommended 'home' test for checking to see if low stomach acid is present (about 90% reliable, if I recall correctly).
One of the problems is that the NHS rarely test for low stomach acid (unless you have one of those capsules that’s swallowed and/or have gastrin levels measured)...tests not routinely available for the majority of people.
One of the issues with low stomach acid is that the symptoms are exactly the same as when you have too much acid. So, those who do have low stomach acid (for instance, those with pernicious anaemia) are routinely prescribed antacids or PPI's...which just make the problem worse because they make the low stomach acid even lower...and symptoms just get increasingly worse...and the PPI or antacid dose is then increased by GPs...and symptoms get even worse. So it’s a vicious circle of ever increasing GI symptoms...primarily because many GP's are not aware that low stomach acid arises as a consequence of PA...or...even...that such a thing as low stomach acid even exists (so similar to the problems people with AI disease experience due to sometimes ill-informed medics 😐).
So...it's a very useful and easy 'home' test for those who may need to try and distinguish between low and high stomach acid, particularly useful for those who suffer with Pernicious Anaemia, who invariable suffer from low stomach acid.
The test is not useful for those already taking any form of antacids (including PPI's) because stomach acid is already 'artificially' altered to be low...so in this sense, the test would give a false low (skewed) reading. Antacids (or PPIs) would need to be stopped for two weeks prior to testing via this method)
Interestingly, hydrochloride acid is responsible for releasing bound B12 from food so that intrinsic factor can carry it across into the body via absorption in the ileum. This is why those who make long-term use of PPIs eventually (inevitably) become B12 deficient (because the B12 remains bound to food rather than being 'unbound' and absorbed into the body via the usual route). Also interesting to note that those who have gastric or intestinal surgery are also at risk of B12 deficiency because the mechanisms of absorption have been chopped out (a posh term for surgery) or otherwise disrupted. Also worth saying that those with IBS, Crohn's disease or absorption issues potentially related to AI conditions can also easily become B12 deficient (thought many medics fail to realise this).
Those with low stomach acid often replace this with HCL tablets...or cider vinegar or lime juice before/with meals. But...these are acidic substances (especially the HCL) so should never be taken in the presence of active gastritis (it's like pouring neat acid on an open wound - ouch ouch). HCL in particular is extremely powerful so, although it can be bought over the counter, it's always best to discuss this with a doctor first...especially for us AI folks who often have gastric issues to contend with.
When I had active gastritis and multiple ulcers (plus low stomach acid) I had to take a six week course if PPIs to obliterate the small amount of acid my stomach produced, to aid healing. Then, once the ulcers and gastritis were healed, I started taking lime juice with meals to aid digestion. Preferred this because HCL ripped my stomach to bits and lime juice is milder then cider apple vinegar - so, I just adopted the principle and found what worked for me, then stuck to it.
Just in case anyone reads this and is tempted to try the bicarbonate of soda test...please be aware that bicarbonate of soda can react with other medications, can also effect electrolyte balance, and impact in other unwanted ways. So it should not be taken regularly as an antacid (to 'fix' gastric issues) unless under medical advice/supervision.
Here's some more information on bicarbonate of soda (this speaks to tables / injections etc., - but applies to all forms of bicorbonate:
So...the 'assertive chap' on the pernicious anaemia forum did indeed give sound advice...although it may sound very odd to those who haven't heard of it before...it did to me when I first heard of it 😉😀. And I'd hope that he didn’t advise you to stop taking your PPIs (I know of whom you speak and that sounds unlikely).
Sorry for banging on about this but I got caught up with B12 deficiency and pernicious anaemia issues when I was undiagnosed and untreated for five years...best advice I got was from the Pernicious Anaemia Society and the Pernicious Anaemia Society forum here on HU. I had to research and push for diagnosis and treatment and without help from both of them, I'd be in an even worse mess than I am now.
In one way, that all prepared me for the next fight...which was the AI one...and all you lovely folks stepped up and helped me with that. 👏👏👏
So...hurrah for all the fora here on HU who do such a good job supporting those who are often not well-served by the NHS (another one of what are becoming regular understatements).
Hope you manage to get your GI issues sorted out...it can be a tricky and very painful business 🥴.
Foggy I have to admit I was playing for laughs here! I did actually try the test again on day 4 with new bicarbonate having not taken any anti acids or PPIs for a few weeks - just before we went away. I still didn’t burp at all - but weirdly nor did my husband? So I’m not sure what to think now - do we both have low stomach acid?
With the flue-cold I did decide that I needed one day of PPIs and have returned to Ranitidine temporarily in order to take (one)high dose Naproxen. However PPIs make me more constipated and I’ve now learnt that Ranitidine seems to make no difference to my cough either.
I don’t have a stomach ulcer yet - just a few lesions, erythmia and petechiae at either end of my stomach lining (ie antrum and corpus).
Whenever I brave it back onto the PA HU I get told by a few very assertive members that I’m barking up the wrong tree. It’s a not dissimilar experience to my very occasional posts on Thyroid UK, except I do definitely have Hashimoto’s.
I admit that even trying to make sense of what you are very kindly explaining to me is impossible. I’ll try again tomorrow. But I don’t have a scientific bone in my body so if I’m reading a medical research journal or an article about a trial then I read the first and last paragraphs only and maybe skim through the rest!
And so, if someone says with great authority to me on the PA HU that I don’t appear to have PA, I just believe them and trot off again once more in search of the missing link! Xx
Thanks to the help and info provided by the awesome Foggyme , I have been able to persuade my GP to prescribe a 'therapeutic trial' of B12 injections despite my bloods showing nothing indicative of B12 deficiency. As the GP said, "The treatment has no significant risk and since we are all out of other options, we might as well give it a try". Mind you, she had to seek adice from the haematology consultants - who advised that it's actually easier to give the jabs than to go through the rather technical business of doing more specialist diagnostics. x
thanks panda2. I've been getting migraines almost every day in recent weeks so I've been limiting my screen time. I figure there's nothing to lose in trying these jabs and its vertainly easier working with my GP than my rheumy...x
So sorry to hear that. Migraines are so disruptive. And I'm not really sure why they are so prevalent with connective tissue disease. I had 3 last week myself, when I used to get them about once every 2+ years. But mine are just the aura now without the brutal headache or the nausea that some get. I do not envy your relentless bout of them right now. I agree there is nothing to lose with the jabs. Fingers crossed for you.
Hi Twitchytoes. So hmm...nobody in any fora should be telling you that you do or don't have a specific medical condition (PA or otherwise). So if that happens (or happened), it's clearly wrong.
I think one of the problems is that there are no gold standard tests for either PA or B12 deficiency, so both can be difficult to diagnose if there are no clear evidential blood markers...and there often aren’t. Also, 40-60% of those with PA test negative for IF antibodies - so it’s possible to have antibody negative PA (bit like sero-negative AI disease). In addition, full blown autoimmune metaplastic atrophic gastritis appears later in the PA disease process and can be preceded by gastric atrophy, so even endoscopy and biopsy findings of PA can be absent in the early stages of PA.
Add to this the fact that B12 deficiency can be caused by many other things (not just PA), and you don't have to have low stomach acid to have B12 deficiency)...and...and...and...
In short, many doctors don't understand either PA or B12 deficiency and often the only way to to determine if B12 deficiency is present is via a trial of B12 injections...and if symptoms (or some symptoms) improve, then there's the answer and continue with treatment.
It becomes even more complicated because many of the symptoms of AI disease are also symptoms of B12 deficency, so it's all to easy to miss a potential B12 deficiency by simply assuming that all symptoms are due to the underlying AI disease - to the obvious detriment of anyone suffering from undiagnosed, untreated or under-treated B12 deficiency.
As you can probably tell, I'm passionate about B12 deficiency 'cause I hear daily of the struggle people have to get a diagnosis...and the damage done to those who can't or don't.
So...do you have PA, B12 deficiency, low stomach acid...to be honest, no idea. But you are in a high risk category (AI disease, Hashimoto's, GI issues, low saliva, PPI's etc.)...so who knows?
So...trotting around in search of the missing link...may you trot in style and with vigour 😉🥴😀...as all here trot along with you...
Thanks for lovely reply Foggy. I’m just in that horrible foggy post viral/cold/flu place and can’t think straight. I copied your post for later reading and feel my response wasn’t as gracious as it ought to have been but I know you’ll just get it - I’m not in a great place.
I’d so like a trial of injections as Whisperit/ Mike has described persuading from his GP at last. It’s certainly so much easier and cheaper than further investigating to at least try it than all the others my CTD doctors mention - and then refuse to offer me!
I can’t understand why I haven’t been offered a trial of injections ages ago given my very PA classic symptoms. At one stage 5 years ago I all but gave up mentioning them because so many people said I just needed B12.
If it doesn’t help hey then hey what’s lost? - but if it does then wow!
Sometimes the NHS just seems to have lost its common sense. Or as a friend said the other day re Brexit et al - common sense has just turned into rare sense these days.
We here on this community do rare sense very well indeed - you especially! Xx
Oh Twitchy...yes I do indeed get it...and I never thought for one moment that your reply was ungracious or in any way deficient (in a non-B12 sense 😉).
And yes again, I agree...really at a loss to understand why your GP won't offer a theraputic trail of B12 injections. Well, not at a loss really...it all comes down to lack of knowledge on the part of most medics.
As you say...no harm and even if the slightest benefit...
And what a good thing for the rare sense here...I certainly would have sunk without trace without it 👏👏👏👏.
Realise that you’re not in a great place right now and sincerely hope that things will pick up a bit soon.
Probably my weirdest experience was having 'voice healing'. This involved someone singing whilst 'scanning' various of my organs by singing particular tones at them. Quite pleasant on the whole, but there were some tricky moments, not least when she said, "I'm going to scan your sacral chakra". This - as everyone knows - is located 'at the root of the sexual organ'. As she bend over and opened her mouth barely an inch above my groin, I had a moment when I thought I had perhaps come to entirely the wrong kind of establishment....
When I was sitting here last night I was thinking back mostly on the experience of the bioresonce experience and these 2 women where standing there looking at this computer screen saying “oh yes look at that and wow such an incredible negative response to cheese, you must cut that out immediately “
I come away and removed all dairy from my diet , which made a zero difference to how I was feeling!!!! But I’m just laughing because I’m looking back at how desperate I was in a bid to find the reasoning behind all of this.
I also sent off my hair to one of those test your intolerance, that come back with a list of things I’d never even heard of 🤣
It would be interesting to see if any of these approaches worked for someone else. The only affect for me was a negative bank balance 😂 x
Oh yes, the last time I went for a therapeutic massage, it started well. But after 5 minutes, he stopped massaging and explained that he would now spend time 'realigning negative energy channels'. Apparently this could be achieved by him having a bit of a sit down and closing his eyes. For half the session. Then he started to ramble on about how eastern medicine was superior to western medicine, and I'm lying there thinking, "I'm paying for a massage, you clot, not a lecture from the wilder shores of the world-wide-bonkersweb." At the end, he asked, "Shall we make your next appointment before you go?" Unfortunately, my energy meridians must have still been a bit misaligned, as I said, ""Er, no, I'll let you know"
You’re on form today 😂 but it’s very sad that some people could be taken in by this sort of thing ( unless it works for them). I wouldn’t be surprised if an alternative medic diagnosed Targaryen Space AIDS which is cured by walking over the edge of the flat earth.
🤣🤣🤣🤣🤣🤣 thank you for putting this smile on my face!!!!
I often get a massage on my feet and legs to try and help with the pain. I’d get slightly concerned if she started talking , although she does spread my legs in the same giving birth position 🙈 this kind of ruins the mood when I’m thinking oh dear, bikini line Is well out of bonk 😂x
Seriously I didn’t try any weird and wonderful tests: too dim to realise there was something wrong and surprised when I was referred to rheumy. My guess is I had a GP then who’d listened hard at lectures. He also had a Rheumy friend, so I struck lucky by chance.
He’d also seen me lose a lot of weight, but I don’t think that would have made most GPs think rheumy.
You are most fortunate. I think some of these doctors still give me that blank stare.
Although of late i have been hearing “your symptoms are typical of a connective tissue disease “. Took years to hear these words. We don’t want to be ill but this is the first step in the right direction for healing 😘x
I went to a natural spa center in central Serbia since the water there is supposed to have healing powers and heals multiple sclerosis. I though ok close enough. I drank as much water from the healing stream and returned home with salmonela AND campylobacter infections. Took about a month and a half to get better...
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