i have "so called" end stage copd, and, in the past year i seem to have suffered infection after infection and many exacperations..and seem to have continually been hospitalized and on steroids and anti-biotics .with few breaks in between. I have an underlying illness of advanced ankylosing spondylitis for which i was prescribed a self, fortnightly injection of "humira" about 4-5years ago, this is a biological drug, [an ant-tnf] which does help this A.S.but this was stopped approx 8 weeks ago "pending on results from the chest doctor" my A.S. is obviously far worse now, with bad back and joint pains,i now get oramorph for this. This "humira" injection is a drug which does seem to lower the immunity system, this is the reason it was stopped, [albeit temporary? i dont know] yet, after being off this injection for over 8 weeks, i am now into my second week, of yet another infection,once again taking anti-biotics and steroids .
i am wondering if the members have any tips on how to, maybe, try and build some sort of immunity. ,, thanks in advance ,,,jimmy
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I have tips (1) if you love a drink and you dont want be member here or any other forums and dont want to suffer vascular dementia threw drinking you need to take viramin b1
As am not a drinker but am member looks like b12 and b5 and vitamin C if you have lung liver guts problems is the ones to take .. But always chat to your doctor gp befoure taking them
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Hi jimmy sorry if seems bit sharp thats not my intension
Its just tips perhaps i should of worded it better ..
hi pergola,, thanks for the post and thanks for the kind wishes, as you say, someone might just come up with something, its worth a try anyway, same best wishes to yourself,, all the very best,,jimmy x
hi dazisnotsogood, thanks for your post, i hope your feeling better yourself now,, it seems to be more lung/breathing problems i have.
many years ago i was a fairly heavy drinker, but havent had a drink now for about 14 years. i have also stopped smoking.
i do take cod-liver oil capsules, and multivitamins,, also taken manuka honey lately, keep washing my hands etc, but still the infections keep coming,, it just gets a bit much at times,,,, but i do take your point daz,, its always worth chatting to the doctor before you take anything,, thanks my friend,, jimmy
jimmy 123,i would up my intake of fruit and green veggies,and carry on with the vits,as your on oxygen try gentle exercises when you can,and drink plenty of water, I would ask your doctor on this,or bring it up with your nurse.xxx I,ve been on google but I cant advice,other than this sorry,take care
hi twiceshy, very recently, i have been doing just that,, but ,i never really used too, so i might get the benefits yet to come,, i get the wiltshire farm foods, they usually have plenty veg in them, the same as the water, i have just recently got plenty of the flavoured bottled water
in,and now drink plenty of that, ,, so again the benefits might still be to come yet.,, yes that makes perfect sense to me,
but i will have to mention this either to gp, resp nurse, as i cant keep going on like this. thanks twiceashy,, regards jimmy xx
it takes time jimmy after 1 infection after another,but keep up with the greens ,fruits and your vits, and mention all this to your gp,write it all down,and keep on with your water,do you have good reading material,that helps ,I,ve fell asleep many times at the computer,oh well,enjoy the rest of your evening,take care,xxx
yes your right twiceashy,, starting to keep a better diet, the right foods etc, i suppose does take time,, i forgot about the clocks changing,, ill need to get myself organized now with my meds, before kip,, i feel done in now:),, you take care now jimmy xxx
thanks twiceashy, feeling slightly better this evening, and yes i do take the raw garlic, i cut it into small pea shaped bits, and swallow that, i read before when you boil it you boil the good away [i think its called allicen],, thanks,, take care jimmy xx
good to see you ,you sound better,yes same with any veg and taters, the vits of them are suppose to be just under the skin, so scrape as close as you can,i just peel garlick and eat it,lovely breath I have ,take care,xxx
yes twiceshy, i think we tend to boil the good out of lots of things,, yes def. lovely breath with the garlic,lol, but it is god for you,, regards take care now,,jimmy xxx,
So sorry you are struggling sweetheart - as if AS isn't enough. I can so empathise with constant infections Jimmy. I am shortly going to see an immunologist and I wondered if seeing an immunologist would be of benefit to you. Maybe you could ask your consultant or GP.
hi cofdrop, that might just be a good idea, to be perfectly honest i hadnt heard of an immunologist, but as you say, worth having a word with my g.p or consultant to see if this would benefit me,, certainly worth a try anyway,, good point cofdrop,, kindest regards,,jimmy x
That's really interesting Cofdrop, I'm looking forward to hearing the result of this appointment.
Jimmy, I can only tell you what I do, a lot of it is from advice I've had here plus advice from a reputable nutritionist, GP and PR respiratory nurse.
I also have a good book which I use to check maximum doses, who shouldn't take what & wh, contraindications etc: The Pocket Guide to Vitamins by Angela Dowden.
I don't know if we're allowed to write brand names but I will anyway because I only want to put good quality in my system.
I have to add that I do not believe a balanced diet is enough for people like us and that our immune systems are depleted by: cigs, alcohol, infections, antibiotics & other drugs like steroids
Get comfy, it's a long list!
A good multivitamin/mineral (Healthspan)
Vit B12 1000mcg. " "
Vit C 1000mg when ill & post antiBs 2xdaily Boots effervescent in pint
water (500mg when recovering)
Vit D3 - super strength 25mcg Oct-May the normal dose rest of year
Echinacea drops when low
Manuka Honey 20+ off a coffee spoon - heat kills the live aspect of it
I don't take it when well ie summertime. This is really
To fight infection not to boost immune system.
Probiotic Acidophilus - 2 for 1 Holland & B, whilst on antiBs & weeks after
_______________________________
I also take:
glucosamine 1500mg for joints & keep arthritis at bay
Omega 3 1000mg
Co-enzyme Q10 to counteract effects of statins
Plant Sterols 800mg to help lower cholesterol (hereditary, not diet)
After 5 years of chronic infections & pneumonia 5 times I had 7 glorious months infection free April-Dec '13 giving my immune system a chance to replenish and I'm sure this along with my supplements +Carbocisteine & Montelukast have really helped me. Only 2 infections this winter. Fingers crossed to continue, I feel deeply sorry for folks who've lost their immune systems.
I hope this helps in some way Jimmy. Dry best wishes to you xxxx
hi peeg, thats a very interesting, good post,, will have a good look at that, and digest it later,,the manuka i am taking is 15+, then theres the pro-biotics,, yes peeg, i will have a good look at all that,, many thanks jimmy
Morning again Jimmy, I'm so sorry you're crook. I read all the lovely replies you've received and I'm so pleased you have this love and support going - hope it's a little comfort to you and gives you the confidence to get a better antiB.
Have you tried calling the helpline? I'm positive they will give you some advice on what to tell/ask for at the docs.
I had my bi-annual respiratory nurse check a couple of weeks ago. She did say "honestly, the GPs don't know anything about copd". She then made me an appt with the GP for me to ask for a prophylactic dose of Azithromycin for the rest of the winter. Coincidently, that's also the only antiB that's got rid of my infections since Dec '12 xxxx
hi peeg,, yes the love and suport is nothing but marvelous, its good to know theres folks out teir that care. i agree what you are saying about g.p,s i believe some are better than others, i have read about this azithromycin, its sounds a lot better than amox. anyway!! it looks more like the thing,, i see its an antibacterial drug used for many lung conditions,,i will mention this to my g.p [i wish my own g.p was back at work,, she seems to know me a lot better],, thanks again peeg,,jimmy
Well howdy there Jimmy init a damn nuisance all of it I dont know much but remember hearing people who have infusions whose immune system is shot now.Also this Azithromycin to help with infections but dont know if any of that is helpful with your AS.Perhaps you need a bit of a convo with your doc or cons and chew over any options avaliable to you that would be helpful.Its a bit of a vicious circle you need steroids but they weaken your immune system making you more prone to having multiple infections on the trot.Personally I would be talking to the medics and pharmacist might be able to recommend something that your doc can then prescribe saving the pennies.Not much help sorry but there are loads here that really know their onions when it comes to supplements. You take care Jimmy. Janexx
hi jane, hope your keeping ok, yes it does seem just like a vicious circle,, need the "humira" for my A.S , need the steroids for the breathing probs,, it seems you just cant win, as both these drugs lower the immunity system, . i havent looked ito this Asithromycin , but will do, my g.p keeps giving me amoxi.. i feel its doing me no good at all, this morning after a week on these, i couldnt even answer the phone as i was unable to talk,,then shes put me on them another 5 days,,, but as you say, i think its time i had a good chat with my g.p or medics, concerning this, no, youve been a good help jane, best regards, you keep well yourself now,,jimmy xxx
Oh yes, good point about checking with pharmacist Jane. They usually know better than GP what you should n shouldn't mix with medications. Hope you on the mend hon xxx P
Jimmy, I wouldn't touch amoxicillin. It's never worked for me in 5 years even though on paper it's supposed to. I simply refuse it now when offered and say "sorry, it's a waste of you money and my health, I shall be back in a week for more or something else so you may as well give me something more substantial now".
i agree with you peeg, the amox is useless, especially being on it lots of times, you would think common sense by the doctors, would tell them its not working for me, but that might just change tomorrow,, ill see how i feel then,,, 7 days on it,, no better then another 5 days!! , thanks peeg ,, best regards,,jimmy
thanks a lot peeg,, i have a lot to look up on and digest in your posts, you have been, and are, an excellent thinker /adviser , it could well be the case about other medications,, they stopped this "humira" because of this, but this seems to have not made any difference,, except worsening my back pain, which i can live with for the moment,, i take small doses of oramorph,, i dont know if this would re-act,,thanks for the kind wishes, same back to you peeg,, jimmy
Hello jimmy,my son was on humira,had infusions at the hospital,he has crohns disease,when he stopped because of the side effects,his amune system went to zero,he never had a appetite due to his crohns,I tried all different types of foods drinks etc,he now eats plenty of fish green veg,fruit,chocolate for energy,plus he is on high calorie drinks that the nutrisnalist give him,maybe it would be worth speaking to your doctor who should be able to help,as you need to be getting the right nutrition to help build you up after all the infections you have had,xx
hi puffpuff,,, yes that humira is for chrohns as well,, i have diverticlitis to boot lol, the humira was to help this too,, i cant really say i had any bad side effects from this humira, but looking back, since prescribed this, i was never a big eater, but eating well now, probably because of the steroids,, but recently i have been trying my best to eat a proper diet, keep hands clean, take vits, exercise,, etc, so as i said before, might just get the benefits of that to come,, hopefully!!,, but as you say,maybe worth getting a diet sheet or something , from some sort of nutrition expert,, i hope your son keeps better puff, kindest regards jimmy xxx
Hi jimmy, you are having a tough time of it, was it bette Davies who said 'old age is no place for wimps' ! Garlic is meant to be very good for the blood, natures own antibiotic I believe, hope you get a good nights rest x x x
thanks medow, yes garlic is a great age old remedy for many things,, i shall not give in to this,, and fight, fight, fight,, meant in the best sense obviously,, a big thanks,,jimmy xxxx
Hi Jimmy, sorry to hear you're so under the weather. The problem is the more infections we get the more steroids we have and they seriously compromise the immune system so we're caught between the devil and the deep blue sea. Also, our bodies get used to the antibiotics and tend not to be as effective as they once were. I have doxycycline first off now as amoxicillin was useless. And if your other drug, humira, also affects the immune system then it just adds to the problem. I can't offer any real constructive advice Jimmy, you must be feeling awful - I can empathise - end stage emphysema for me too, plus osteoporosis that's playing me up something rotten the past few weeks (whinge, whinge!!). Hope you are feeling better very soon Jimmy. Libby xx
och thanks libby, it must be real rotten for yourself, you have a lot to put up with there, but your right in what you say, we seem to be caught in a vicious circle, between the devil and the deep blue sea, i suppose really the result of our illnesses,, but i think you are right with the amoxi,, not really much good when youve been on it so much before, thanks for the post libby, much appreciated , you keep well yourself now,, at least we can whinge together lol:).. all the very best,,jimmy xxx
Hi jimmy, well I am a big believer in vit d - so I put my husband on that two years ago a high dosage after reading about a fellow sufferer Derek Cummings who runs a great website. Also vit c a fizzy tab once a day and lastly when my husband was on a abs constantly I started him on a live yoghurt drink Actimel once a day. He does seem to have less infections. Good luck TAD xx
hi tadow, will look into that too,, i have heard a lot about the pro-biotics,, live yogurt,, i will get into that as well, and the vit c would no harm either,, many thanks tad,, jimmy xx
Hi Tad. I take the same only not the Actimel , I have a great bowl of plain live yog for breakfast. I've had two infections since Dec rather than the continuous ones of previously. I take a probiotic acidophilus capsule daily.
Stay well yourself xxx
Hi Jimmy,just to wish you better days! Some wonderful advice on here,so I can't add anything,just hope sunnier days ahead xxx
ah your lovely wendells, yes there is great advice here, im quite sure there will be many sunny days ahead,ill fight this as hard as i can, thanks for your kind wishes,, jimmy xxx
Manuka honey seems to help protect from infections. I also have a herbal prescription. May be worth looking into? X
hi julie,, i do take the manuka honey, but getting the stronger stuff , i was getting the 10+ then the 15+ but now believe its better going the whole hog and getting the 25+ stuff , although its dear to buy, its still only the price of only 3 pkts of cigs., even a herbal prescript. worth looking into,, thanks a lot julie,,kindest regards jimmy xx
HI Jimmy, I am sorry you find yourself in this position and all the others are right, in that, you need the healthiest diet possible and loads of vitamins and minerals. Have you thought of being asked to be referred to a dietician? They can go over your diet and prescribe soups and drinks that are packed with all the nutrients you need. I don't know what else they do, but while you are waiting to see one just keep taking multi-vitamins and eat as well as you can. There are also high energy drinks available from chemists but definitely check with your pharmacist or doctor about these. I hope you keep better. I am waiting to see a dietician myself (which is why I thought of that) because my diet is terrible. I am just not hungry at all, and get by on one or two slices of toast and cheese a day. I am taking multivitamins as well as vitamin d and folic acid. My condition is nowhere as severe as yours and I feel if I could just eat then I would get my strength back. It is the same for you, that obviously if you can manage to eat a very healthy diet then it will do nothing but good. All the best and I hope you get over this infection quickly and get further help with your diet to boost your immune system. Oh, I have just remembered that there is a tonic you can get called Metatonic from the chemist which is excellent, but again check with the pharmacist or doctor.
I hope you feel much better soon and are raring to go! xx
hi hugs,, yes, your right in what you say, try our best to keep a good diet, sometimes easier said than done,especially when your under the weather a bit, ,, the dietician is a good suggestion, as they would be experts in nutrition, something im not lol, but try my best, i hope your appetite picks up,, you have actually reminded me of metatone, i got this a while ago and felt it did do me good, but as you say, would still be better checking it out with the pharmacist,, i had forgotten about that,, thanks hugs,, ill fight this no matter what,,and hopefully be raring to go soon:)...regards,,jimmy xx
Hi again Jimmy, Thanks for taking the time to reply, especially when you are far from well. The others who have answered you obviously know you and have become very fond of you over time. I am new here and just dipping my toes in and taking little baby steps!! What I'm trying to say is take heart and be cheered and uplifted by all those people who care so much about you. There is an awful lot of information you have been given and it will take time to process it. If I were you ( I'm not trying to be bossy here ha ha), I'd go over the ones that are simpler to do (because you will be so exhausted), and take it from there. I know how hard it is to maintain a healthy diet because I have virtually no appetite at all. Reading between the lines it sounds like you have some degree of appetite so that is all to the good. I would definitely see the dr or dietician about supplying you with soups etc. I live in Scotland and have been told they are available on prescription. I do not know you Jimmy but a lot of people love you and you have the right attitude to keep on fighting. If you want to see a dietician then ask your dr for an urgent referral. I have barely eaten for over a year now and I have to wait a month! So make sure any appointments are referred as urgent. If you live with someone then then can maybe do this for you as I know how exhausting it can be, just thinking about it. You take care, keep fighting and I hope to hear soon that you are making progress. Best wishes xxx
thats really nice of you hugs, i understand what your saying,, i am much the same as yourself,, still learning and still taking baby steps lol,,my appetite has been poor in the recent past, i am trying to eat more sensibly now, but as you know, its hard to force yourself if you dont feel hungry,,i thinks its better now, only because of the steroids.but i will ask for an urgent referrel to see a dietician, i live on my own and get the wiltshire farm foods, not really big helpings as such, but eating more veg now than i used to, i must say though hugs,, i certainly am uplifted with the members kind wishes and responses, this helps in itself, although very tired worn out now,, can always look back on the posts, i really do thank all the members, for all their help/advice , and kind wishes, this has been very valuable to me,, thanksagain hugs,, you keep well now,,,kindest wishes,,jimmy xxx
Oh jimmy, I'm so sorry you are poorly. I have missed your jokes (I now understand why) I think I'm your biggest fan. However, your health comes first. As far as building up your immune system goes that may prove a bit difficult. Vitamin c and zinc is very good for your immune system, also if you can't tolerate garlic (like me) then tablet/ capsul form is very good. It would be a good idea to speak to blf. In the meantime keep your chin up. xxx
hi must carry on,, thank for the compliment,, ill fight this no matter what,,,,,,,,,hopefully come up with some better jokes lol :).. all the very best,,jimmy xxx
Hi Jimmy sorry to hear you aren't feeling tip top take care and rest. I mix milled flaxseed in my porridge, yogurt. mashed potato and sprinkle on many other things. It is a natural source for omega 3, protein iron calcium and magnesium. Holland & Barrett often have them 2 for the price of 1. xx
hi suzy,, ive never tried the flaxseed, but do put some bran in my porridge,, really for this bowel prob. i have [seem to have everything me :)] ,, although funny, it shows you when your down a bit, your concentration goes too,,,, i put my porridge into the microwave yesterday,, for 2.30 mins, , then found i had put it in for 23 minutes,, well nuff said!! , thanks suzie, take care now,,jimmy xxx
Hi Suzy, that's the first time I've seen flaxseed mentioned here. I take it daily too only I grind mine and add it to my live yog concoction at breakfast. You can buy ready ground too at H&B.
Ah bless you Jimmy i hope you feel better soon. Blooming damp weather doesnt help things either. Ive used the boots own version of vicks 1st defence spray been using it when i go out in public to try and avoid breathing in other germs. Agree with fresh fruit and veggies.......manuka honey (i cant get away with this its yukky) lots water plain old tap apparently just as good for you as bottled i saw it on this morning last week ! Be cheaper to just add some squash . Your taking vits and washing hands etc so your doing the right things . My dr said its just some people are more suseptable than others at getting these blooming chest infections. I had to go back on steroids as well last thurs as breathing became struggle im on 2 mg and its helping i can hold a conversation instead of just listening ! I think maybe a chat with your gp would be good see if they can give you more advice. A friend of mine drinks aloe vera juice every day and hasnt had a cold for years so maybe try that as well ? Have a look on Victoria Health on web they have good natural things on. Hugs and love to you hope this helps love Judith xxxxxxc
hi judeth,, i know you have problems yourself [most of us have lol] but as you say,, up here anyway, the weather has been damp cold and misty, not really the best of weather to cheer you up,, or to help,, hopefully soon we should get some decent weather, then hopefully buck as all up. i see on the other post judeth you were still struggling a wee bitty, it really is a pest isnt it, i hope the 2mg help you, it might be the casewith me net week, but at this time, only taking it a day at a time,, will have a look at Victoria health, as i do believe that natural things are best, problem is,, with our illnesses were getting the most un-natural things to take lol,, you keep yourself right now judeth,, wish you well regards ,,jimmy xxx
Good morning Jimmy how are you feeling today? Its still damp and pretty miserable up here in northumberland ....i dont know but it seems not only the government thinks we dont exist but now it seems neither does the weather!!! No
Warm sunshine for us!!!! Not to worry im not going anywhere so im going to busy myself in the house today. Unfortunately our tv has decided to part company so i suppose we will have to go and try to suss out a new one we can work without having to ask our daughter haha. I dont know about you but i get these awful mouth ulcers after bad chest blooming sore they are too pesky things. Anyways hope to catch you soon see how you are.....im off to gargle salt and water !! Love judith xxxxx
good morning to you, judeth, and all, im frightened to shout it from the roof tops, but believe it or not,,,,,,,,i feel much better today hoorray!!!
the weather is the same up here in edin, damp, cold and miserable, but ive got the heating well on,, so ok in the house.i phoned the doc to ask if i could have a sputum and urine sample uplifted,, as i cant get to the surgery,, but they said i would need someone to bring them up,,[ got two beuties too lol] i will see if i can get anyone today, i doubt it though, they asked me if i wanted a phone appoint,, i just told them to leave it for the moment,, [if it aint broken dont fix it lol ] i am down to 6 steroid today, 4 on day 4 and 5,, 2 on day 6 and 7,,, then 1 on day 8,, still 3 days extra antibiotics to take, so ill play it day by day,, but what a relief to be feeling a bit better, my breathing was much better this morning, even the carer said it was hard to believe the difference in me,, more myself :),, i get these mouth ulcers too judeth , but outside[a bit inside] my mouth on he sides of my mouth, i use biotene, which seems to help., they are a blinken nuisance, especially when you eat.,[its the inhalers that cause that,but the salt water gargle should help],, sorry about your telly, youll just need to talk nice to your daughter, see if she can get you one,, not that theres much on it lol,, i just have it on, for the sake of "something going on in the living room" i only had about 4 hours sleep, so now going to have a bite to eat,, then see if i can get a quick nap lol,,ive still got the aches and pains in my joints, but can put up with that, just now,, i do hope your feeling better, this weather doesnt help, are you still on the maintinance dose of steroids? anyway, i sincerely hope your feeling better,,will speak later,,warmest regards to you and thank you judeth,,,,,jimmy xxx
Hi Jimmy well we had to buy new tv as ours totally non starter. Ive bought some bonjela adult for mouth ulcers as still sore seems to be helping . Hope you keep getting back to normal as they say keep taking the pills. Love Judith xxxx
hi judeth,, glad youve got your tv now, it all seems to happen at once,hope the bonjella helps the mouth ulcers, you would hardly believe those tiny wee spots would cause so much discomfort, a real pest they are, i have been "waxing and wayning" today, after such a good start,, but did manage a nap,,,,as you say, or as they say up here,, just keep taking the tartan tablets lol take care judith regards jimmy xxx
Good morning Jimmy i hope you had a restful night? My mouths bit better so bonjela is working. Yes watching new tv now heir hunters then this morning so as its tipping down here (oh my two ex race horses wont be happy even though theyve got rugs on their backs they hate the rain!! Spoilt horses they are!) Its the grand national sat so ill have to see who ill bet on heehee. I hope you have a good day keep having a nap and keep warm catch you later love Judith xxx
shall read and digest posts later,, feel rotten just now,this just cant be right at all,,,, but KNOW i will pick up as the day goes on,, after getting all the "dope" kicked in... will post and thank later,,jimmy
jimmy 123, if your awake during the night,remember there will be members on hear to talk to,just log in,and say how you are feeling,were hear jimmy don't forget,just a cyber finger away,if your not to well ring for an ambulance that's what there ,there for,take care,xxx
great to hear that twiceashy,, you have all been really great, i will fight this no matter what,, ive made up my mind not to give in to this,,,you take care now,, jimmy xxxx
[Quote] BACKGROUND: Substantial data from animal studies have demonstrated a stimulatory effect of dehydroepiandrosterone (DHEA) on immune function. However, little is known about the effects of DHEA on the human immune system. Since aging is associated with a decline in immune function and in DHEA production, we proposed that oral administration of DHEA to elderly men would result in activation of their immune system.
. . . . .
CONCLUSION: Administration of oral DHEA at a daily dose of 50 mg to age-advanced men with low serum DHEAS levels significantly activated immune function. The mechanism(s) to account for the immunoenhancing properties of DHEA are unclear. Consideration is given to the potential role of an increase in bioavailable IGF-I, which by virtue of its mitogenic effects on immune cell function, may mediate the DHEA effects. While extended studies are required, our findings suggest potential therapeutic benefits of DHEA in immunodeficient states. {/quote]
hi stilltruckin, you could well be right there,, i will have a good look at that link, or rather both links,, ill get there though eventualy , im certainly not at my best at the moment, but slighlty better, thanks for the links and post,, regards jimmy
hi butter-fly,,i hope your keeping well, i am getting there slowly, but surely,, if anything, i have more fight in me,, i wont let this beat me, ive still got aches on my pains, and pains on my aches lol, breathing not to good all mornings, but im not giving in to this lol,, but i think i was!!! strange how it seems to "down" your whole system , but i am trying not to let this happen,, thanks for the post butterfly,, ill be of to my bed shortly, oxygen on, and take 5ml oramorph, and hope for a decent night,, i think i will, as i feel very tired now,, god bless,,,jimmy xxx
If you are still feeling unwell please call for medical help. Call your Scottish equivalent of 111. You know this would be your advice to others in a similar situation.
You sound really down and not your normal self . Please make the call so that you can at least discuss things with a medical professional . All the best and hugs for a speedy recovery.
hi coastal, yes i wont hesitate to do that, here its nhs 24,, the doctor made me promise this on friday, but not quite ready for that yet, but as i say, if an emergency happens to arrive [god forbid] i wouldnt hesitate now,, but im not a lover of hospitals [who is lol] but if i can just fight this a few days,,and maybe have a word with my g,p tomorrow,, ill get there,, thanks coastal,, take care now,,jimmy
Hi Jimmy. So sorry you are having so many recurring infections and nothing seems to be working. You've had lots of good advice from so many people so some of their suggestions may help you but you seem to be doing a pretty good job yourself as regards your diet.
Seems like your infections don't seem to clear up fully, just lessen and restart. I've had this myself until I convinced one doc at my surgery to give my a longer course (Erythroped A 500mg 14 days) of antibiotics. Either the bug is still in your system or someone is passing it along to you.
My doc also recommended yogurts every day and I found this a great help.
I know what you mean about joint pains. I have severe spinal stenosis and when the pain is active, it is constant. Even the cortisone injections and gabapentin don't cut through it fully so you have my sympathy. I am at the very severe/end stage and often feel I have been put on the scrap heap by the medics so come on here for some sound advice. When our system keeps screwing up at every turn it so hard for us not to be scared and anxious.
Keep posting Jimmy and let us know how you get on. Sara xxx
hi sara,, yes i know exactly how you must feel, it seems to down every bone in your body,, its even hard to explain how you feel!! i was intending having a phone appoint, tomorrow with my g,p regarding ant-biotics, as this amoxi, is doing nothing for me,, i might just mention Erythroped as i def. feel i need something either different or stronger, but i am going to have a word with my g.p re. antibiotics, i cannot understand why their putting me on the same anti-biotic for about a year, on and off,, even if it was good, surely my body would be too used to this now, and really render it useless for me,,but ill be phoning tomorrow anyway,,,you take care now sara,, will keep you updated,, thanks again sara regards,,jimmy xxx
hi sohara,,youve just said the magic word,,fight,, and fight i will do, your exactly right in what you say,,sometimes you just loose that fight bit,, but i must hang on to that bit,,,,strangely enough ive been thinking about that all this day,, but i wont give in,, ill bounce back somehow, ,, thanks for the lovely encouraging post sohara,,,, jimmy xxxx
Hi jimmy, your post about carrying on fighting has helped me, tis the middle of the night , cough ...wheeze ,,,headache, and a bad day yesterday...but I will carry on! Thanks
hi knitter, sorry to here you had a bad day yesterday,yes it is rotten, and does make things very difficult, i hope your a lot better today, it seems at times when our ebb is that low, things in fact are very difficult, no doubt about that, but i am glad my post has helped you, i keep telling myself, fight it jimmy, fight it jimmy, dont give up, dont give up,, but m not always like that, i even take some convincing myself at times,,but when you think of it,, difficult as it is,, carry on , no matter what!!! def. the best way,, i have an old wee card stuck on the door,"when things go wrong as they sometimes will" i might just print in a post,its always good to read again,,,, hope your feeling better knitter,, stick in,, all the very best,,jimmy
When we are young Jimmy, we have inside that 'Inner strength' but as we age and especially when we are ill, we lose some of that strength..and it takes us longer to overcome the difficulties in life.....but while we are alive...we still do have something deep inside us that can help us to fight ...that helps us to overcome...when we are very sick, it is hard to find that 'inner strength' but it is still there Jimmy...and I know from reading your posts, that you do have this 'fight' inside you...and you my dear friend WILL fight and never give in.
hi sohara, very true and wise words,, its a bonus to have friends fighting together,[meant in the right sense] as i think when this "inner strength" fails us slightly, a little encouragement to remind us most definitely helps. thanks as always sohara, for a lovely post,, regards jimmy xxx
Hi Jimmy so sorry to nag,but I really do believe your doc should be giving you a better antibiotic amox is just not pokey enough for you at this stage Im sure.Take things real slow and rest. Janexx
hi jane ,,, i agree entirely, ill be phoning my gp tomorrow as i cant go on like this,, but i will be having a RIGHT word about these useless amoxi. im just taking things easy , not much option really, but in saying that, feel very slightly better,, but i know first half of the day is worst, but feel i should be better still by now,, regards jimmy xxxxx
I have to agree with Longlungs, Jimmy. Say NO to the amoxicillin. Many people with lung diseases are given this antibiotic (it's the cheapest) but that only results in the infection taking much longer to clear (if it clears at all). Tell your doc that you want a more suitable antibiotic, and get bolshie if you have to! Or try the helpline at BLF, they can advise you on what to say a little more diplomatically than me! xx
hi toci,, as i have said,, i am now learning not just to accept anything they give me,, i know these amixi are just no good for me so phoning gp tomorrow,, your bang on in what you say,, thanks toci,,, jimmy xx
Hi Jimmy I'm so sorry to hear your not good like you I have had infection after infection since last May. I do believe you get all the vitamins you need from our food even though we rarely sit down and eat a full meal I think steaming veg is better and eating as much fruit as you can I also believe a little bit of what you fancy does you good get well soon Jimmy.xx
hi onamission, these infections have been off and on since a year past feb,,i had a bad car accident then, broke some chest rib bones [already fused] and punctured a lung,, nothing but infections since, pneumonia and collapsed lung in june,, but as you say eating a sensible diet helps, i never really used to do this, but far more conscious of it now,, thanks for the kind wishes,, all the best,,jimmy
Good advice all round jimmy, and I endorse what twice shy says, reach out jimmy, don't be on your, one of the biggest negative effects on our health is loneliness, worse than smoking I have read, your not in your own lots if people on here supporting you jimmy x x.
thanks medow,, although i live on my own, its good to know i have freinds here, i think thats whats been keeping me going,, but very tired worn out now, so hopefully get a decent nights sleep,, a big thanks medow,, regards jimmy xxx
Hi Jimmy, like you had constant infections for 9 months and decided to try and build up my immune system I take a probiotic in the morning (Holland&Barret) 1000mg of vit c every day olso VitD3 and have not had an infection for a while found Doc not very helpful, lots off good advice here and agree with the Amoxicillan I asked for a better one too, no harm in asking, he gave me it so hope you feel better soon take care.
hi primrose, yes, wise words,, i will be asking my gp tomorrow for a more suitable antibiotic,,i will digest a lot of these posts later,, as very tired now,, a big thanks primrose,, you take care now,,jimmy
I've just thought of this, my old uncle, who I'm sure had emphysema, used to slice up a Spanish onion, and layer it with soft brown sugar and garlic, cover it and leave it over night, you would not believe the liquid that came out of that in the morning, he would drink it and swore blind that this kept him infection free, would make him cough up heaps of gunk too, I'm going to give it a try, hope you get a restful night jimmy, if you do wake come on here, sure they'll be someone around x x x
well, well well, theres often a lot of sense in these old remedies,, i havent heard of that one,, but would imagine that would work well, i bet there would be many couldnt take this,, but i know i could, , my old dad used to put a spanish onion in the ashes under the old coal fire until you heard it "squeeling" with the juice running out, he used to mash it up , and make us take it as kids when we had a cold,,,,its something similar, but i would imagine that would be better,, ill bet it would do no harm anyway,, certainly worth a try,, shall remember that,, thanks medow,, thats me off to kip now, really worn out now,, but thanks again,,,jimmy xxxx
Probiotics "super 8's" there called. Quite expensive or udo's probiotics. You need a minimum 30 billion. Illness tends to stem from the gut. So large doses of probiotics boosts the healthy bacteria, and voilà. You should start reaping the rewards pretty quickly, I.e a couple of weeks. Xx
thanks kirsty,, it sounds like pro-biotics is the thing,, i havent heard of "super 8,s" but that certainly sounds good sense,, i will look into that kirsty, a big thanks,, kind regards,, jimmy xx
So sorry to hear of your problems Jimmy. I know it might sound obvious but I haven't seen anyone yet mention steriods. Are you already on a maintenance dose? if not that might help. If you are maybe try upping them? or even reducing them? Obviously speak to the doctor or nurse first. Other than that I cant offer any advice but you have had tons of it anyway. I hope something works for you and you are feeling a bit better soon. xx
hi coughalot, this could be part of the problem, i have been on and off steroids quite a lot in the past year. [side effects showing now] after weaning off them a few weeks ago, i was disappointed to finish up back on them again. the last lot was 40mg for 8 days, now in the course of this week, i am doing a weaning off course once again, 30mg for 3 days,, going down to 5mg on the 8th day,, ill see how i get on with this,, took 6 today,, now 4 tomorrow etc. it maybe that i might need a maintenance dose,, ill cross that bridge when i come to it,, i was feeling a lot better this morning,, but how a day can change. thanks for the kind wishes coughalot, i hope you are keeping wel yourself,, regards jimmy xxx
when the enemy within is invading and your own defences need extra assistance to battle them you need to be armed with inside intelligence of your body's battleground disposition, first of all, compromised lungs have many bacterial enemies as well as bacterial friends, colonies known known as "flora"
the most bog standard antibiotic prescribed is a broad spectrum hand grenade called amoxocillin
From personal experience, this has failed to resolve an imbalance which is at the root of my particular recurrences of hospitalisation which is where I may have acquired it in the first place,
Without beating about the bush, establish whether your body has acquired
pseudomonas
most people have this and in uncompromised or healthy people they are no problem, but in COPD it is a major problem as it can never be fully eradicated, just managed
hi primrose, chris peacock and teehee,,, i dont know about this pseudomonas,,, but have had plenty blood tests,, i had sputum and urine [i have catheter bag] samples ready when i phoned the docs. this morning, but was told i would need to take them to the surgery,, but i am slightly house bound at the moment,, so couldnt get them up.. ive another 2-3 days on this extra 5 days amox. ill give them the benefit of the doubt,, but if not cleared by wed-thurs will call the doc out,, [i have missed my own g.p, she is off just now for some reason, i have more faith in her, and find her easier to talk to],,, but thanks to the three of you, as any info. is invaluable, i will keep looking back all the posts and digest it all better,, jimmy
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Janexx
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