Well, saw my GP again today as absolutely no better, certain symptoms leaning towards either new infection or the original not totally responding to the last antibiotics so getting a different one. Lungs now have air entry but crackling at the bases no results in the X-ray as yet. Heart seems to be behaving today, inhalers for asthma have made throat & mouth so sore despite drinking to rinse away so laying off those while on antibiotics - maybe I just need to be put through a sheep dip to cure all ailments or put me in one of those zip up biohazard fumigators 😂 Hope you’re all having a good day xx
Oh they say also my Vitamin D is very low so could contribute to the fatigue levels so have a course of that too
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Afibflipper
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Bless you what a horrible time you've had. I've just read your earlier posts which I've somehow missed seeing. Haven't you been supplementing with vitamin D? It's been touted as protecting us from covid. Have you had any prescribed now?
Hi Jean, I’ve not been supplementing to be honest as I have to pop so many necessaries it’s like an evening meal. I have been put on a his dose regime for 7 weeks and then continue with the highest over the counter. To be honest when they kept taking my bloods these last months it was never mentioned about any deficiencies so therefore I presumed all was ok!
I have 3 different medical this week and next all about returning to work (off 10 months - haven’t dared mention any of this when they say hope all goes well) as they want me back)
Thanks for your good wishes - hope you are feeling ok right now? Xxx
Gosh flipper you’re really not having a good year so far are you. What a shame. Sometimes these things take so long to improve that you begin to feel they never will. But it will. I had that with Covid, steroids, two lots of antibiotics, and a cough you could hear 3 miles away. Fingers crossed that it starts to improve very soon.
Does stopping your inhalers not tend to make your breathing worse tho? Xx
My reply to you just disappeared! Was just saying I should have enough cover from the oral steroid tablets and can still take the reliever inhalers. I’ve been off sick from work 10 months and have 3 return medical booked next week (not dared to say the current status quo
I’m like you with the cough, live in a semi and keep the neighbours awake (they say to my son is your mum really Ok?
well flipper things can hopefully only get better your doctors are certainly checking you out to get to the root of your issues. Wish I had doctors to show me as much interest. Take care all the best xx
You're having a rough time and I admire your spirit. It will get you through! Having low vitamin D definitely impacts on our immune system so hopefully it will help. Fingers and toes crossed that things improve.
Thanks Singwell, I don’t know how I’ve kept my spirits up to be honest as this would normally have had me in a mega depression ordinarily I honestly think it’s being on here - I’m the type of person who would do a good cover up re depression etc, I’d answer the phone or door and be happy jolly say I’m fine but this time although it’s been 10 months incessant I haven’t gone to the doldrums so thanks to everyone xx
Thanks Singwell, don’t feel bad - I’m actually not on those kind of meds anymore and seem to be doing well with change of thoughts - think the combination of the people on here, previous therapy and the thought of if I sink I can’t really help myself so no point in in that - I try to be my own conscience(my own Jiminy Cricket on my shoulder who witters down my ear best process - don’t get it right every time but I feel so so strong right now and refuse to give in (despite being absolutely worn out!) Thanks for your help xx
Hi Steve, it is - I’m on a high dose of something called Pulmicort and when we increase the normal dose for attack, and together with oral steroids and a shed load of antibiotics it goes wild (despite using fizzy drinks, sugar free to dislodge the inhaled dose and cleaning teeth) I have a medicine for this when it sets off but takes time to work
Thanks so much for sending the information though I appreciate it x
I used to work for a company that made these inhalers. It seems that some people have the candida organism naturally in their throats and given half a chance it will proliferate and cause soreness. One way that can help is to use a spacer device. Have you tried that? They really are the best way to get much more of the drug (both blue and brown) down where needed into the tint bronchioles of the lungs and might even mean that you could reduce your dose significantly. Reducing the steroid dose would be one way to get rid of the thrush.
Hi Steve I Have the spacer for the blue, I have a handihaler for powder capsules but the Pulmicort is powder based and so you click to break the internal delivery unit and as you then inhale it spins around to release the drug - there is no way to use it without the way it activates. I’ve had so many devices due to drug sensitivities but you may be right about the natural tendency to it! I use a topical medication in the mouth to kill it off when I get it (permanent nightmare 😂) I’ll ask GP if there are any newer ones on the market next time I speak to them - thanks for your advices 🤗
I see. You are a bit stuck it seems. It was Becotide aerosol that reigned supreme when I was in the industry, but many other forms and dose-types have become available since. It must be a pain to have to suffer with side effects when you badly need the drug. Poor you. I don't have asthma but in my career have met many who do and know that it can be an uncomfortable and something truly frightening condition.
I tried so many different one, some gave me pounding headaches, others the same issue with the throat (one was the current drug but got a generic given in a totally different shaped inhaler - it literally directed it onto the back of my throat due to its shape.) Another I needed up self diagnosing that it was actually swelling my lungs (they thought it was just the asthma so kept increasing the dose - I could not breathe at all so stopped it myself - improved dramatically - it was causing angioedema! X
People who have low vit D suffer more from respiratory viruses. They catch them more frequently and have worse symptoms . This is because of vit D having a big effect on the immune system. I hope you have been given a sufficient amount because the pathetic recommendations of the NHS for supplementation will do very little if anything to raise a very low level.
I wasn’t aware of that - they gave me 20,000 units twice a week for 7 weeks then continue over counter purchases. I’ve been taking high vitamin C with zinc too x
That is a good amount . When you go to maintenance ignore any recommendation for supplementation of 400iu a day. It's not enough! You should really test again at the end of the 7 weeks to make sure you are at a good level. The best thing to take with vit D is magnesium . The two work together and you end up with a better level than with the vit D alone. Vit C and zinc won't harm but the low vit D is probably stopping you shaking off this infection. Another supplement you can take for lung health is NAC - N acetyl cysteine - it helps to make the gunk more fluid and easier to cough up. It also supports the immune system. I maintain a vit D level of 175 nmol/ l and take NAC x4 a week. I have not had a respiratory infection since March 2016.
Not heard of NAC - is it prescription or over the counter? I take something called Montelukast at night and Fexofenadine daily. I did used to take Magnesium last year, I had actually wondered if when I stopped taking it if that’s why the AF went haywire!
Thank you for that feedback I think I’ll recommence the Mg and wish they’d looked into all this 6 weeks ago xxx
Just looked up the NAC but it says people with bleeding disorders or on blood thinners should not not take it - I’m on Apixaban - thank you for letting me know about it tho x
It is the same as fish oils. They say you should not take that either. I have been taking it for years ( fish oils too!) before I went on Apixaban so just carried on. It is an anti aggregant rather than an anti coagulant. I looked up the link for NAC in the article you posted which was to the NIH office for dietary supplements and it said it might affect blood clotting. I don't think anybody knows how much and the blanket advice is always to avoid anything like that when on anticoagulants. I have never taken more than the minimum dose even when I used to take it every day.
I’m going to collate all this info and book in to see my local pharmacist who is an extremely helpful guy. If he’s unsure he’ll always fully investigate and get back to you. I’ve always been a conundrum with meds due to allergies & sensitivities so he has new pages in his books just based on me x
I am very sensitive to meds too especially since being floxed but I tend to ignore these blanket bans on supplements if you are on this or that med. Mainly because I would never take mega doses of any supplement and some I only take every other day. The truth is that there is very little data on drug/ supplement interaction even less than there is for the interaction of taking several pharmaceuticals at the same time - and that is sparse. I would be interested to know what your pharmacist thinks about NAC. It was actually recommended to me by our pharmacist the last time I had a cough in 2016 but that was before I was on Apixaban. I started taking it as a supplement later but at the same dose .
Glad to hear your Vitamin D deficiency is finally being attended to. I had similar deficiency at 22 nmol/L, which I raised to 107 nmol/L in 6 months or so. You will need to get retested after about 6 months to check your progress re Vitamin D. Ask your GP. I feel my raised level has definitely settled my heart rhythm, making it less jumpy.
And I hope you will read this vital research article about Vitamin D and Mortality rates I posted recently. You might have to join Medscape to read it, but it's free, and I've had no follow on issues after joining ...
Yes, retest. I tried to get retested after 3 months, but my local London based CCG (Clinical Commissioning Group) wouldn't allow a retest within 6 months, presumably for cost reasons. This is why I said 6 months, but your CCG may be different.
My daily maintenance dose, after an initial total dose of 600,000iu in the first 30 days, was 3000iu per day in a capsule that also contained 100mcg of K2.
I'm telling you that because it's a higher daily dose than the small amounts NICE recommends, but is actually in line with current research (where levels of 4000iu + per day are often recommended).
I’ve been taking Vit C, Zinc, (used to take Mg but didn’t want to take anything that may affect the rhythm adversely since ablation 6 weeks ago. Since the ablation diet has been a little poor as these infections making me not want to eat really. Exercise for last 4 months has been poor due to the breathlessness doing very little to bring it on. No caffeine at all for months, low salt and very little alcohol at all. I’m sure it is all this infection as sinuses, chest etc are disgusting and on 4th antibiotic in 6 weeks. Currently I don’t have AFib as I’m on Flecainide and the ablation was for AFlutter which does seem to have worked so far. X
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