Hi there - just to run this past everyone - I have just recovered from Covid which has left me with either Covid tongue or oral thrush - not sure which yet - but the gel I have been given to cure the thrush doesn't seem to be doing any good so assume it is Covid tongue which can happen with Lupus patients and Covid infection.
I bought some live yoghurt to use in my mouth as I had heard this was good to put the balance/flora of the mouth back to normal. I have never liked natural yoghurt but had this huge pot to use up so had some on some fruit and quite enjoyed it - I was therefore using it every day to finish the carton.
A day later I had terrible joint pains - my wrists and thumbs were almost rendered unusable - I eventually worked out that the joint pain was my over active immune system not liking these 'bugs' whether they are supposedly good for the gut or not. I had forgotten that about 10 years ago my Lupus consultant told me off for taking drinks like Yakult which was live bio as he said he could see by my blood tests that my immune system was going crazy trying to kill them off. I thought I would let people know this because if you do use these products it might be worth considering that some of your joint pains could be as a result of your over active immune system being unhappy. As soon as I stopped with the yoghurt my pains went - thank goodness !
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Just wanted to say that I had the same experience after taking a live yoghurt drink - felt really unwell, joints ached, weak as water for about 24-48 hours. Then everything reverted to normal, in fact better than normal for a few days. Have not tried live yoghurts since then. Interesting to know that your consultant had warned you about taking Yakult etc. I had never heard anyone mention this as something to avoid as a lupus patient.
Hello there - glad this might have helped others - my aim in life is to share so people don't have to suffer as I may have done along the line of this rather complex illness. I also have the same problem with blue cheese.
My pain was so bad that I thought I must tell others because it might be that the joint pains people are experiencing could be something as simple as that. I was in agony and had to go to my GP - then I had a lightbulb moment - I wonder ? stopped taking it and joints returned to normal. Tongue is difficult - the yoghurt did help - but at what cost? So back to using the gel but very difficult to shift. Apparently Covid hits the ACE receptors and there are a lot of them in the tongue hence why I have a problem. Thank you for your good wishes.
Agh - thanks - same as me - you can also have the same problem with drugs and vitamins and minerals - I found I often experienced dreadful joint pains and realised what I was taking my body didn't want it - or more importantly the pathway to metabolise it was somewhat broken. Hence I ended up with bottles of unused supplements etc. - expensive being ill ?
Yes, I also have lots of bottles of unused supplements in the cupboard. The advertising is so convincing and when you are struggling there is the temptation to try anything and everything. We learn the hard way!
Thank you for your help on this - unfortunately my body also can't seem to take any herbs or things like oregano etc. - I wish it could - I am now using salt water rinses which can stop the thrush growing further but will not get rid of it so using the gel once more - 4 times a day - I do suffer with thrush at times after antibiotics but first time I have had oral thrush but obviously Covid did this to me - but problem I have - I could be treating something called Covid tongue which will after many months go away on its own - but couldn't get any help from my dentist which was disappointing - I had hoped he would help me identify what it is - he asked me to send him a photo which I did and then nothing heard - I then gathered he didn't know what it was and didn't want to admit it. My GP said yes it's thrush but I am not sure it is. It's not responding to the gel I would have thought it would have shown some improvement.
When I asked my consultant it he knows how to treat Covid tongue (it was a phone call) he said not much is known about Covid tongue - I felt like saying hmm how about you learn then - I am having to !
Can you not take Probiotics in capsule form, Optibac or Biokult? You need to tell GP you want a swab taking of tongue...The lab can then confirm what the problem is...
Note I said 'tell' the GP, not ask?
I demand tests e.e.g. Mouth swab CT Scans, MRI Scans etc xx
No I wouldn't want to take them at all and have tried tablets when they first came on the market. My body doesn't want them and so I go with the flow. Yes I might ask for a swab to be taken as dangerous allowing fungal infections to go elsewhere in the body.
Only way to diagnose is via swab I totally agree. I have phoned dentist and see what he says and then I will go from there. I take steroids for adrenal insufficiency which I believe I have had all my life because I have had an undiagnosed thyroid condition so that I was running on my adrenal gland hormones rather than thyroid - I was diagnosed with Lupus in 1998 via a kidney biopsy (Lupus nephritis) but I have taken no drugs for the Lupus using supplements to get me over the dreadful problems I experienced - eventually put on thyroid meds and the Lupus went negative on bloods.
Agree with the tell not ask - I go down that route each time - I am tired of being fobbed off by people who are not up to speed on my problems and I am !
As a former (qualified) Dental Nurse, I suggest (if you haven’t already done so), to see a Dentist. They are far better placed than a GP on any issue regarding a mouth & they deal with much more than just teeth. Afterall, they look inside lots of mouths every day & advise on the condition, what to use to remedy it &/or prescribe various medications.
Warm salty water is a wise choice ……
Thanks for the interesting info regarding yogurt/Yakult - certain fat free Greek or Greek style yogurts give me crippling abdominal pains; Fage is the worst!
Thank you so much for offering this advice - when I was researching Covid Tongue (my tongue was so swollen when I was ill and I could hardly eat but I took B12 vitamins because that is also a symptom of B12 deficiency and as I have a thyroid problem too) and the swelling got better - I knew tongues were dentist and mine is usually really good but has let me down on this issue I will have to try again and get an appointment with him. Thanks again will let you know.
Obviously your GP can help you out with with mouth problems especially as you have other health issues which may be connected, but Dentists are extremely knowledgeable and experts in that field, plus they can refer you onto Oral Surgeons if necessary, (not specifically for surgery though as Oral Surgery covers many mouth issues).
I have Oral Lichen Planus which was diagnosed by my Dentist but confirmed via a biopsy at Oral Surgery after referral to them by Dentist.
Our guts are the centre of many health problems! Thanks for suggesting about lactose, although I’m not intolerant as far as I’m aware 🤔
Totally agree and jaws - I have often been referred to maxio facial consultants by dentist and he is man to see as I could see all over the internet but he didn't answer me when I sent at his request a photo of my tongue so I assumed he was not interested in giving a diagnosis and can't get an early important with him - so I went to GP.
My dentist gave me oral probiotic tablets, you dissolve them in your mouth, perhaps that would help? Otherwise I use Neem oil mouthwash for mouth sores, it helps a lot.
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