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Beatit

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Posts: 29
Reply with quote  #1 
Hi all

I have just started D mannose and gave up low dosage abs.  However I am still wondering if I did right thing. Should I have taken both? Has anyone gave up abs for D mannose and worked well?

D mannose bottle says two spoonful per day max and should not exceed that.  I read many posts here but they are all recommending more than that. Is it safe to take 3-4 times of their max amount? I have mild symptom in urethra and thinking to take three spoons per day.  I wonder this is enough.

Also should I stop taking cranberry tablet? or can they be taken together?

Your advice will be appreciated.
Moderatorsusan

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Reply with quote  #2 
Many take D Mannose along with abs (although not together) and others manage on a combo of naturals alone. You will have to see what happens if you come off abs. Hopefully all will be ok but the slightest twinge and you may want to restart or up the dose of DM to 6-8 times a day to knock things back.

A mai tenace dose of DM is around 2/3 time a day. Some take more others stick to this. There are no hard and fast rules. Most who post here areflaring so you go in high and hard I.e 8 times a day or every two hours in severe cases.

I'd also stop the cranberry tablets as they are full of sugar and now proven not to work in warding off infections or as a treatment during one.
Beatit

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Reply with quote  #3 
Thank you for your quick reply. It is a great help.

I have started with twice a day and perhaps build up to 4 times as I have mild urethra irritation. Or do you think I should take 6-8 times until I am absolutely clear of symptoms and then come down to two?

Also how long does it take to make difference?

Thanks.
Moderatorsusan

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Reply with quote  #4 
Id stick at the maintenance dose for now. If symptoms increase you can up the dosage but it should only be 8 times a day or every 2 hours during an active acute flare.

The nerve endings in the bladder and urethra can often take longer to calm down that the infection so be patient. As to how long to take DM, you can take it daily as a preventative dose. Plenty do.
Beatit

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Posts: 29
Reply with quote  #5 
Thank you for your reply.  Very useful!
Kimberly

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Posts: 62
Reply with quote  #6 
How are you doing? I've bern using mannose on and off and never sure if it works for me or not. I'm also on strong abs and used to have decent spells of no symptoms, but now very rarely am symptom free. Any thoughts welcome x
Beatit

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Posts: 29
Reply with quote  #7 
Hi Kimberly

I am sorry to hear that you are rarely symptom free.  I am not knowledgeable enough to be able to advise you or make suggestions.  But have you thought about changing abs or seeing some specialist? Have you tried D m on high dose for a long time?

We have to battle on, haven't we? 
Kimberly

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Posts: 62
Reply with quote  #8 
Hi thanks for replying though. Yes I'm seeing a consultant. I've seen many! They change the abs from time to time, but definitely feel like I'm losing the war. Don't think the consultant likes to hear that though!

I try dm at a high dose for a while then drop it down. I'm just not sure it helps me. Are you getting good results with it now? K
Beatit

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Posts: 29
Reply with quote  #9 
Hi Kimberly

Have you tried Professor M-L? I hear a lot about him and many sufferers are helped.
Also Miss S E at UCL? Also have you tried gynaecology route?  
The trouble is it takes long time to see anyone on NHS.
The professor can see patient privately in fairly short waiting time. 

As for D m, I am now on the 7th day. Just managed 7 times yesterday and hoping to achieve 8 times today. Up to now my sore/mild burning in urethra has not changed much but not getting worse. My symptom is probably not as bad as yours but still irritating and get me depressed.  I will try the high dose for a 5 days or so and if it still not making any difference, I will come down to 2 a day. Perhaps I will have to explore some other route then.  I am thinking to increasing oestrogen by updosing Vagifem next.

Thank you for your interest.  Hope you will feel better soon.



LynneMale

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Posts: 2
Reply with quote  #10 
I've just ordered some D mannose to arrive tomorrow. From reading the posts it sounds like I can take it with abs? I have IC/PBS and overactive bladder. I had my 2nd bladder botox in June and in September I was told I had to self catheterise twice a day. Since then I have had major problems. Several infections and agonising pain (burning/itching etc). I was even admitted to hospital overnight a few weeks ago. Last night I went to A & E but all they did was change my antibiotics. I can go 24 hours relatively pain free then I'll have a few hours of excruciating pain. The GP sent me to A and E as he didn't know what to do and A and E said it's for the GP to sort. So frustrating and I'm scared no-one can help. So I'm hoping D mannose will give at least some relief - that's if i can take it with abs (and vesicare, buscopan, co-codamol and sodium valproate - yes I rattle with taking so many drugs to help the problem).
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Lynne Male
Beatit

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Posts: 29
Reply with quote  #11 
Hi Lynne

I understand you can take Dm with abs. Don't know about other drugs but I have a impression that Dm does not interfere with other medicine.  Moderator Suzan seems to have a great knowledge about it.  I hope she will advise you. 

Also ask your GP to refer you to the specialists. COB office has the information.  I got this from Moderator Suzan too.  I hope she will advise you on this too.  NHS takes a long time but if you prepare to pay, you will get to see a specialist fairly quickly.  

Sorry to hear you are going through a lot. Let us know how you get on with your Dm.  I hope it will help you.

Moderatorsusan

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Posts: 943
Reply with quote  #12 
Hi Lynne

Yes you can take DM with abs but be aware that it will only work on gram negative bacteria that is E. coli and other coli forms and other gram negative bacteria. So if you have proven E. coli infections it should help. If not then you would need to be tested to check what bacteria you do have in your bladder so that the relevant abs can be prescribed.

I'm sorry that you are struggling with the IC PBS and OAB. Thats quite a combination on top of the recurrent infections following the catheterisation. Sadly GPs and A&E struggle with recurrent infections as there are no guidelines for these only acute simple infections and testing is currently missing up to 50% of infections. Not good.

As the others have advised the COB Office have an excellent Bacterial Cystitis pack they can send you with full details on treating bacterial infections plus the details of specialists treating people with recurrent infections. By all means call them on Monday. We would encourage you to join as you can get a lot more information as a member as well as a very informative quarterly newsletter and yearly conferences at which speakers provide lots of information on IC, OAB and Continence and also Bacterial, Recurrent and Biofilm infections.

The office hours are 9am - 2pm Monday to Friday.
Kimberly

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Posts: 62
Reply with quote  #13 
Hi BeatIt. I see the Prof, but after a few years of following their regime my symptoms are getting worse and more frequent again unfortunately. Initially they responded quite well.

I hope you find something that helps you.

And Lynne good luck, you must be having such a tough time. I take dmannose with antibiotics.

Xx
Patrick

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Posts: 6
Reply with quote  #14 
Hi guys - had IC for well over 15 years, untreated. Discovered DM about 4 years ago, took a high dose initially, then kept to a maintenance level for 9 months, then stopped them. Since then, no pain, although frequency is still an issue if I don't watch my diet. Now I just take DM as and when needed. A miracle for me - gave me my life back.
Beatit

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Posts: 29
Reply with quote  #15 
Hi Patrick

I am pleased to know Dm has worked for you and you got your life back.  What a wonderful remedy it is! 

Unfortunately Dm does not seem to work for every one. It did not make much difference for me but taking maintenance dose just in case. Now I am trying something else and it seems to have improved my condition. So not all is lost.

Enjoy your life as you now have got it back!

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