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Date: 11.06.2014
From: Julie

Subject: antibiotic protocol

Hi everyone, rheumy appointment yesterday and they are going to start me on Minocycline, just wondered if it is any good.
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Date: 11.06.2014
From: Jenkins

Subject: Re: antibiotic protocol

Hi Julie , that is a bit of a shock , most consultants never give it out , please let us know how you get on with it ,
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Date: 11.06.2014
From: Julie

Subject: Re: antibiotic protocol

Yes I was surprised aswell, but next appointment is not for two months, I will update as soon as I have more details.

I think they are just fed up of me because if I don't agree with what they are saying I speak out, I ask endless questions and make loads of suggestions, I refuse to be put into the rheumatoid arthritis box for rest of my life just because they try to fit my symptoms to RA. Yes I know I probably have it now but I also think there is something else going on in my body, this new treatment might help.
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Date: 12.06.2014
From: Patricia

Subject: Re: antibiotic protocol

Hi Julie :-) Have you looked at the road road back.org forum?? It is all about the antibiotic protocol - I am sure you probably have - so apologies if I am telling you something you already know :-)

I am pleased to hear your Consultant is willing to give it a try at least. I am prescribed Minocycline (Aknemin) by my wonderful Rheumatologist. He had no hesitation in prescribing when I asked him three years ago. It is certainly not a quick fix - although some people do get remission. For me, it has been very slow but my last bloods show my ESR at 10 and my CRP something like 5 (can't remember exactly). My ESR has never been that low even when I was 'well'!!! I still have lots of swelling and pain but I do feel that I haven't deteriorated since starting which is what I was hoping for. I did try conventional drugs (in fact I still have to take prednisolone and oramorph) but they really didn't agree with me. I was originally taking 30mg prednisolone I was in such a state, bed bound unable to walk, but now I am down to 7.5mg and the Rheumatologist had said I can start reducing again. Who knows some of the swelling and pain may be side effects of the medication!!

I am sorry I don't know your 'back story' but I really hope you get some relief with minocycline.

Have you also looked at diet. I am trying this at the moment. Apparently, dairy and gluten can be big triggers for us autoimmuners. Who knows?? It is all a guessing game really but it is worth a try. What I will say is I was very grateful for the conventional medication too - without it I was extremely poorly and it got me back on my feet :-)

Oh, don't forget to take probiotics too alongside the mino - at least two hours apart - very important :-)

Take care and very best wishes for continued good health.
Patricia xx
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Date: 12.06.2014
From: Julie

Subject: Re: antibiotic protocol

thanks for that Patricia hopefully it will do me good. I had looked at roadback a while ago but didn't ever imagine it would be given here, it is consultant who is suggesting it.

I have always said to them that I do not have, never had any stiffness in the mornings yet they keep saying that my RA is very aggressive. I read others stories and am not anywhere near their pain level, yes I have pains and they are sometimes worse than other times but I manage.

I have always thought that I have an ongoing problem either bacterial or infection mainly because after a course of antibiotics I feel really well for a while then I go downhill again, for months I have attributed my problems starting due to Lyme Disease, (too many symptoms are as RA) but getting doctors here in UK to think it could possibly be that is like climbing Everest. Anyway let hope this might prove something, if it doesn't work and proves me wrong then it will be back to the drawing board.

thankyou again for your comments I hope it is good for me as it has been for you.

Julie xx
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Date: 12.06.2014
From: jackie

Subject: Re: antibiotic protocol

What dosage are you on Julie ?
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Date: 12.06.2014
From: Colin W

Subject: Re: antibiotic protocol

Hi Julie , gl with Minocycline , seems pretty rare any doctors in the UK giving it out , my results from antibiotics are pretty mixed

sulfasalazine is a combination drug which part of it is a antibiotic & anti-inflammatory but been on it since 1996 & done very little , was on flucloxacillin for couple of weeks & my CRP came down very low but in hospital this year having 5 infusions of antibiotics a day done very little

think atleast they given you something to try & realy hope it works & wish they would let alot more of us try Minocycline in the UK
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Date: 13.06.2014
From: Julie

Subject: Re: antibiotic protocol

Hi Jackie, sorry dont know that yet, will update when I get it.

Hi Colin, dont know why they are going down this route, maybe, just maybe they are listening now to me going on about me possibly having Lyme Disease. I remember you saying antibiotics didnt do you any good but lets hope your new one will go on getting better.

Had message from Lyme disease association this morning and they said that this antibiotic is sometimes used for Lymes, so who knows the reason, if you remember at my last appointment rheumy did agree that something else was going on in my body and keeping my inflammation levels up. Dont see anybody for two months so will find out then. I still have to keep on with the mtx, sulpha and plaquenil, dont know if they will stop after starting mino.
Julie
xx
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Date: 13.06.2014
From: JACKIE

Subject: Re: antibiotic protocol

Hello Julie, Doxcycline is the usual antibiotic for Lyme but Minocin is also a tetracycline. I am in remission thanks to Minocin, the treatment isn't a quick fix and it takes at least 3 months to begin to get improvement. I recommend you have another look at the roadback site as there is so much info and quite a few of us from the UK.
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Date: 13.06.2014
From: Julie

Subject: Re: antibiotic protocol

thanks Jackie, were you diagnosed with rheumatoid arthritis aswell?

Did you have Lyme test?
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Date: 14.06.2014
From: Jackie

Subject: Re: antibiotic protocol

Yes I have RA and yes I got tested for Lyme which came back negative, but the NHS tests done at Porton Down are not very accurate. The best test is through Igenex but its expensive.
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Date: 15.06.2014
From: Julie

Subject: Re: antibiotic protocol

Jackie did you know you had been bitten and did anybody listen to you after your negative result? Is this why they put you onto mino or did you have to go through all the other ra drugs first? sorry its all questions but I am really happy to find somebody else to ask things. I was tested but it came back negative, found out later that it would come back negative because of the ra drugs I am on, also Lyme gives you a positive RA factor aswell. I am not too bad at minute, its mainly my wrists and middle fingers, although I was just prescribed a different anti inflame and my arms and back of hands are itching like mad and it looks like I have nettle rash all over them, going to not take it today to see how it goes. Or it could be steroid jab I got last Tuesday, it worried me a bit because it isn't good if you have Lyme to have steroid is it.

I wish it was just a simple answer yes you have it so here is the treatment, not just keep saying to me well we don't really know what is going on with you so lets try this drug now to see if it helps. Two months is going to be a long time to wait till next appointment. Hope you keep on feeling good, don't you need to go to RA clinics or anything now?
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Date: 16.06.2014
From: Jackie

Subject: Re: antibiotic protocol

Julie I did have a bite so I insisted I got prescribed 4 weeks worth of Doxy, even though test was negative. The next stage was that I was referred to a rheumatologist who diagnosed RA. The drugs on offer were not for me so I spent many hours researching alternatives. I found the Roadback and they helped me find a private doctor who was prepared to prescribe Minocin.
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Date: 16.06.2014
From: Jackie

Subject: Re: antibiotic protocol

P.s Julie if you do have long standing Lyme, Minocin alone will not help you. You will need a cocktail of antibiotics for some time. If you have RA then Minocin could help you greatly but the dosage needs to be correct.
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Date: 17.06.2014
From: Julie

Subject: Re: antibiotic protocol

thanks Jackie, you were lucky to have been given the doxy in the beginning, makes you wonder if you actually did have RA in the first place!! I don't know yet what dose or anything about what they plan for me but at least they are trying AP. I did get two weeks antibiotics about 4 months after I got bitten (presume I was bitten by tic) cant remember what they were but doxy does ring a bell I will have to ask g.p. Whatever the reason they are giving me the drug I hope it helps me like it has you. Did you have bad RA symptoms? I was told that whatever I had/have is what caused me to have RA. Did you have any other specific symptoms for Lyme? Here I go again I will stop pestering you.
thanks once again Jackie
Julie
xx
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Date: 17.06.2014
From: Jackie

Subject: Re: antibiotic protocol

Hi Julie, I had a tick bite and at the time I had to remove several ticks from my dog. My RA onset was sudden and severe. The problem with Lyme is that there are no specific symptoms, Lyme can mimic many diseases. There is a really good film that has won awards about peoples experiences with Lyme called "Under Our Skin" you can download it off Net Flix or watch part of it on You Tube. Julie have you been tested for Lyme ?
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Date: 17.06.2014
From: Julie

Subject: Re: antibiotic protocol

Hi Jackie, yes I was tested for lyme, but only couple of weeks ago, it came back negative but I have been told by Lyme disease assoc that because of all the drugs Im on for RA it would have come back negative, even if I had western blot the drugs would have same effect, and that is where my g.p. has left it.

Before 2013 we spent all our spare time walking Yorkshire Moors, Lake district, anywhere in open countryside and we live backing onto open countryside, Our dog also had tics on her, I actually found a gorged one on the carpet in our living room just near chair where I sit, dog hadn't been in living room, whether it came off me I will never know but it was after that all my problems began, two nasty bites which didn't heal for ages, a terrible rash and so many symptoms which in beginning I did ignore, but then my cousin from USA came for visit, (she is a nurse who works with helicopter ambulance to go to remote place) and she said to her it seemed to be what she has seen before which was Lyme. But UK is so behind with this its unbelievable and nobody was listening to me, just kept giving me different antibiotics every couple of months, probably to shut me up.

Like you my RA came on very suddenly to the point where I was unable to move or get out of bed by myself, but this was about 9 months after finding the tic. I am going to look for the film what you said about and try to download it, thanks again.
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Date: 17.06.2014
From: Emm

Subject: Re: antibiotic protocol

Hi I asked my rheumatolagist about antibiotic protocol and he said he had not heard of it! Yet I know his colleague has prescribed it to someone.

Strange is it not!
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Date: 17.06.2014
From: Jackie

Subject: Re: antibiotic protocol

Julie from what you say it could very well be Lyme. The Breakspear clinic in Hertfordshire test and treat Lyme but they too are expensive and there is a new clinic up North in Beverely that has started to treat Lyme. The NHS are pretty useless at treating this disease. Its a shame this forum doesn't have a way of private messaging as I have the telephone number of a woman here in the UK that has chronic Lyme and what she doesn't know about it, isn't worth knowing.
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Date: 17.06.2014
From: Julie

Subject: Re: antibiotic protocol

Jackie I have just watched the film, what an eye opener.

I live very near to Beverley, in fact we have been there today shopping its about 15/20 minutes from where I live, is it a NHS clinic? my email is listed, does it not show on here? Sorry just read my message and it sounds a bit abrupt but don't mean it to be.

Just popping out will be back later.
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Date: 17.06.2014
From: Julie

Subject: Re: antibiotic protocol

sorry Emm missed your post, it does sound strange doesn't it, wonder why, its like its a guarded secret!!
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Date: 17.06.2014
From: Jackie

Subject: Re: antibiotic protocol

Julie, the clinic is "The Well One Clinic" and although you have to pay, the rates are very reasonable. If you joined the Roadback site I could pass on so much more info as it has a private message function. Another interesting thing you may like to watch is a video blog on you tube by Ruth Heasman, under rheumatoid arthritis and Lyme. She has documented her treatment on the antibiotic protocol over the years. She lives in the north of England and has Lyme and RA.
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Date: 18.06.2014
From: Sean

Subject: Re: antibiotic protocol

Hi Julie - there is a really interesting article on the Roadback website about combining AP with diet change that others might also find useful..

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/506.html
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Date: 18.06.2014
From: Julie

Subject: Re: antibiotic protocol

thanks Sean it is a good site and they have plenty of good information, I have a feeling I will be looking again. I just hope that when I do go onto AP then it will not only help my RA but it will clear up anything else that might be causing this inflammation.

It is strange but I haven't taken any sulpha for two days now and my fingers are really good no pain at all. You watch I will start off a bad flare but I am going to just watch what happens. Was taken off diclofenac by g.p. but I was given a different anti inflammatory last week by rheumy it is called ETORICOXIB take one a day but it made me come out in rash over my arms and made me itch really bad so I have stopped taking that aswell to see what happens, two days and I don't have rash, all these months I have taken some strong meds without any problem but this one straight away caused me problems, it also gives me really bad heartburn. I really don't like. I am also looking at diet

Jackie - I know the private clinic it is part of Jacobs Well which is a Christian charity set up by two local g.p's. Very handy to know about the clinic thankyou. I did try to join roadback but something went wrong I will try again. Not had chance to look at the video blog but will do later tonight. Keep in touch
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