D - Mannone: I was very interested to see that... - PMRGCAuk

PMRGCAuk

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D - Mannone

prunus profile image
19 Replies

I was very interested to see that PMRpro also uses the above. I have a disabled husband who has been in and out of hospital like a revolving door this year. He wears a catheter and each time it is changed he has had an infection including sepsis twice this year. A colleague of my son's recommended D-Mannone and for the first time he tried it three weeks ago. I can hardly believe it..... Dare I ? I am also giving him cranberry juice. I have ciprofluoxin in the fridge but much prefer something natural.

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prunus
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19 Replies
SnazzyD profile image
SnazzyD

Did they ever try prophylactic antibiotics prior to changing it?

prunus profile image
prunus in reply toSnazzyD

I think since the beginning of the year just about everything possible has been gone through on the various occasions in hospital and the last is keeping cipro in the fridge.

Thanks for the suggestion. That was way we tried this.

Blearyeyed profile image
Blearyeyed

So glad you seem to have found an answer for your husband's infections.

I will keep my fingers crossed for you that it continues working.

Keep up the cranberry juice , and is he allowed garlic , ginger or turmeric?

In supplement form or in your diet they do help prevent or reduce some of the horrible side effects I have had in the past with infections from minor surgeries or invasive tests.

Zinc in the diet and a zinc based cream as the emollient you use to moisturise the skin area around any lesions , ulcers, or invasive medical things like catheters and IVs can also help in the healing process or help reduce long term infections that come from invasive sites.

I hope you continue to have good luck with the D-mannone

Take care you and yours .Be x

prunus profile image
prunus in reply toBlearyeyed

He enjoys ginger biscuits and onions. We try to have a good diet. Never tried turmeric. What does it do? Many thanks for your helpful suggestions. As you can imagine we have got desperate in the last twelve months and have dreaded catheter changes - I certainly have. x

Blearyeyed profile image
Blearyeyed in reply toprunus

What is your husband suffering from?

Has he got GCA like you too?

I only ever recommend things I have found consistently beneficial to me if I do recommend it and I am not one to try everything.

Turmeric I have taken in food and in supplement form ( I only take 1 not the 2 suggested per day) for its affect digestive problems and IBS symptoms.

Although , it can help many other inflammatory conditions like arthritis and joint related illness and studies have shown it to be a good antioxidant and help in brain related activity and heart conditions, digestive issues were my first reason for taking it.

The active ingredient is curcumin and the supplement form is made increasing the amount of active ingredient in them.

I have noticed that my general joint and head pain also increased along with the digestive stuff when I ran out , I won't run out again!

It can reduce the gut inflammation and constipation , without it I have to double my IBS medication and I return to a constipated ball , that's how I know it works.

As with any supplement or prescribed medications too!! you should always make sure you are not allergic to ingredients or that those ingredients don't interact with your other medication. All the things I recommend don't generally interact with most medication.

I only suggest one capsule first off as it can make your bowels move quicker and stools looser in the first few days when you start it. If that continues for four days + it may not be for you. I always take all my drugs and supplements mid meal ( unless specifically told to do it on an empty stomach) , as I have found that you get the greatest absorption , and most effect from any of my drugs by doing so, they mix with the food in your stomach and are digested slower rather than shooting through your system and creating expensive , healthy wee!!

I take two+ if I have serious cramps or constipation it works better than the harsh chemicals stuff my GP prescribes.

Be aware, at first your urine or poops may be more yellow taking it , it is the yellow spice in curry after all.

I take garlic each day to boost my immune system and help my joints and circulation.

It does help me.

I put fresh minced ginger in my juice or smoothies or in hot tea and lemon drinks it again helps digestion , and when gargled with has antibacterial properties so helps sore throats , bad stomachs or any mouth issues.

It is from the same family as turmeric so is also antiinflammatory.

I also add Manuka or the best local honey to my drinks I can find for antibacterial, antiseptic and antihistamine properties, local honey helps if you have reactions to insect bites and hayfever too. It is also good for improving skin health, dermatologists often use it for certain types of open sores.

You can make minced ginger by chopping the peeled root and putting it with water and some lemon juice in a blender or nutrition bullet and keeping it in your fridge to add a TSP in your juice, teas or smoothies. If you buy it from the shops make sure it isn't full of salt, vinegar or preservatives, that is for savoury cooking and doesn't taste as good.

It's nice with the honey and apple in your cranberry juice.

I also take the cipro when I cannot stomach the juice.

Since using turmeric, ginger , ginger or green tea I have been able to get my GERD symptoms in check , now only need that drug in acute episodes .

I take an omega 3+ capsule for joints and inflammation , only Omega 3, Omega 6 should be avoided if you have inflammatory issues , it can add to inflammation.

I also find eating probiotic live yoghurt each day helps my digestion and other inflammation issues too. I have it for breakfast or a snack with some honey , nuts , oats and fruits.

All of your foods can help ease or speed repair of your various issues, even if they don't cure them. But I will repeat , if you suffer from any food intolerances or are on certain medications just check they work in harmony first.

Zinc cream helps my skin and reduces the size of my skin ulcers too . If I have a lesion or old drain or IV site I find very gently massaging the area around it ( about half to an inch from the wound) in tiny circles with the zinc cream or medicated cream you are given helps to stimulate blood flow to the area and reduce wound growth or speed up healing. It works on dry skin or fragile areas too to help reduce skin tears or easy wounding for anyone on steroids.

I have a zinc and vitamin E cream as vitamins A, C, E help wound healing and skin , brain and eyes in general. I have alot of these vitamins in my diet too.

Hope this will be handy for you . If you want any other info let me know.

Oh, and your comment on the other feed about your insect bite , the experts still are not sure what initially triggers GCA.

Many of us may have a system which means the likelihood of having an autoimmune or autoinflammatory disease is higher , for many reasons , too many to list here. Whether your reaction to your insect bite triggered that autoimmune response or you had already begun to suffer from GCA and the strong reaction to an insect bite sped up the symptoms , it is possible that there is some link.

Many people's Autoimmune conditions surface or flares occur after infection ( from virus, bacteria , bites) , strong allergic responses ( food, drugs, bites) or from surgery, injury, trauma , extreme stress or hormonal issues ( like pregnancy, menstrual issues , menopause, testosterone levels) .

But until there have been more research papers that filter down to larger medical articles and health board guidelines we will still have many years of raised eyebrows and disbelief from the white coats to come .

Take care and I hope your husband keeps progressing well, I am amazed at your strength , looking after someone with a disability when you have your own is a tremendous achievement. You are a star!!

prunus profile image
prunus in reply toBlearyeyed

I have just with great effort managed to photocopy your tremendous response to me so that I can digest it at my leisure. No my husband's problems are completely different to mine and his dwarf mine. So it is not always easy. He has his own Community Matron who I get on well with which is a big help. Thank you again. x

PMRpro profile image
PMRproAmbassador

No - I don't use it myself though there are a few people on the forum who do with great success.

Telian profile image
Telian in reply toPMRpro

I just started to use it this week and started with a UTI two days later - coincidence or what? Am still taking it as well as antis, is it something that has to build up do you know?

PMRpro profile image
PMRproAmbassador in reply toTelian

Really don't know. But maybe it flushed the bugs out of where they were hiding and some caused the UTI? I imagine it probably is a preventative thing that you use almost constantly.

Telian profile image
Telian in reply toPMRpro

Think it is more of a preventative similar to cranberry juice - you’re ‘bug’ theory makes sense so am a bit heartened by that. Only time will tell, thanks.

prunus profile image
prunus in reply toTelian

My husband started to take it the Sunday before the Wednesday of the change and continued 'til the following Sunday. We really did not know what was best. We have continued the cranberry juice however. I am hopeful but it is only once so far. The medics inc pharmacists have all had their heads together in this time. I never knew there were so many antibiotics 'til this past year. Originally he was catheterized for a serious back op at Charing X hospital. All went well 'til convalescence, then a Dr had the catheter taken out without making sure someone was on duty who could replace it if necessary and there was noone. I still find it hard to believe. He avoided me after with what happened.

PMRpro profile image
PMRproAmbassador in reply toprunus

I hope you filed a complaint?

prunus profile image
prunus in reply toPMRpro

That place was unbelievable. There was a problem at every turn. I got I dreaded going and he could not wait to get out. They even told me I could not go in the ambulance with him back to Charing X and that was not the case at all.

Blearyeyed profile image
Blearyeyed in reply toprunus

If you have the energy now it is worth putting in a complaint if you feel up to it.

Not just the Department but the official external complaints board.

Even if it doesn't change what happened to you having it on their record means it could help others in the future.

They are investigated, it remains on their records , they are also often reminded of their job and told to improve.

So sorry you had to go through that, the added stress really doesn't help your health either.

Gentle hugs to you and yours. Be xx

prunus profile image
prunus in reply toBlearyeyed

That is going on for four years ago now. My poor husband could not have been better looked after in our local hospital. He was provided with a turner and a special chair and stool. When we arrived there the chair was totally wrong even to my inexperienced eyes. I pointed this out to the Dr immediately but nothing was done. I said why could he not have brought the correct equipment with him. That was not possible - different Trusts. At Charing X he had been kept at 35degrees to the horizontal for his back 'til they discharged him back to our local hospital. This all happened over Christmas four years ago. The only thing about that Christmas - I'd eaten some turkey. Charing X surgeons did an excellent job.

Telian profile image
Telian in reply toprunus

Poor man - really feel for him - are you giving him D-Mannone or still deliberating? Don’t think it helps an existing infection so you might have to to give him antibiotics to get him clear then try it, same with cranberry juice. See above what PMRpro wrote re why I got a UTI shortly after starting D-M. You should make a complaint about your husband’s treatment and how it’s affected him - it’s not acceptable and avoidance isn’t either. Best wishes to your husband, hope he feels better soon. X

prunus profile image
prunus in reply toTelian

At the moment just cranberry juice 'til the next change is due then he will go back on D Mannone. Thanks for your best wishes - much appreciated. x

Blearyeyed profile image
Blearyeyed in reply toprunus

He begins it before the change , Yes?

Has he been offered any preventative antibiotic drug course ever, or given one during the change?

prunus profile image
prunus in reply toBlearyeyed

Over the past twelve months both Drs and pharmacists have been involved and tried everything they can think of. Irreprable damage was done through that Dr. Keeping antibiotics in the 'fridge is the latest suggestion. Between them they are doing all they can in the circumstances. It has not been an easy year.

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