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Hi everyone,
Thanks to you all who spread the word about AP and its practitioners. When you don't know where to turn next it's nice to know there are other people out there who have already been through the same thing and are willing to help out.
Thanks again,
John
PS I'll let you know what happens after my appointment!
Hi there – I don't know if any of you are still watching this post, but if you are – HELLO! My mum has scleroderma with lung involvement and I am also based in Cheshire (Mobberley – Katie, very near you 😉 ) . John – given the locale, I am wondering if you can tell me who your rheumy is as it may be that we can get a referral to him and if he is open minded to AP, then we might just be able to get mum started on it! She has refused to have cyclophosphomide (forgive the spelling) and MMF as instinctively we thought it the wrong thing to do as she already has bladder issue and is in her 70's. The stuff is so toxic. How have you been getting on with AP? Hope you are all feeling well and that you are making a recovery or getting close to it. Together we will beat it – thank God for the internet and its ability to defy established medical practice 😉
Hi Nicola – Just down the road !!
Sorry to hear your mum has sclero. I don't have any personal experience of that, other than what I read on this board, where as you will have found, there is a wealth of info. From what I read on here I think that AP has the most to offer sclero patients, as it actually saves lives !
I am still doing great on minocycline, but have recently tested positive for Lyme (Band 31 test), which means that Dr D down at Breakspear is now willing to treat me with other abx, which I hope will turn my 95% into 100% remission !
This is all with the blessing of my GP Dr B at Wilmslow Health Centre, who is 'very interested' in the whole thing and willing to prescribe abx. My rheumy just seems to be 'watching' and hasn't ever prescribed anything useful ! All the other local ones I have heard about are stuck on the traditional medicines. If you can't get any joy from your mum's rheumy, perhaps you could get to see Dr B and see what he says ?? Perhaps give him 'The New Arthritis Breakthrough' to read. His predecessor Dr C (a lady – now retired) read it and originally prescribed the mino for me.
Love to hear how you go on. Perhaps we could meet up ?
Best wishes, Katie 🙂
Oh Katie – thank you sooooo much for replying!!! Would LOVE to meet up and maybe bring my mum along. I can't tell you how wonderful it is to have someone nearby who understands how to work the GP's ;-). My mum actually lives in Glossop so is under Tameside Healthcare, but I think these days it might be possible for her to get an opinion from another GP. Just knowing what strings to pull is incredibly useful. Thanks so much!
Hi John,
I live in Scotland and an advocate to my son's health. I can only tell you our story on how we approached AP therapy with my son's GP and Rheumy.
I talked to both about AP after educating myself to a point that I felt confident that I knew what I was talking about. My son's GP initially was all for it and as he said “It won't do him any harm, why not try it.” He later cooled off after realising that abx therapy was not part of treatment protocol. I was going to approach my son's Rheumy again but there had been friction between us and I chickened out.
So, I took the book into my GP's surgery and asked for him to read it. He read it all and was impressed enough that he said for us to go to the initial appt with Dr. H in Surrey and whilst we were there to ask him to write to both the GP and Rheumy explaining his role with AP and treatment with abx.
This he did and God only knows what he wrote but thankfully my son's Rheumy and GP were both of the feeling that it was worth a try. The Rheumy said that both Doxy and Mino had anti inflammatory properties in them. This might be their way round the protocol thing. Dr.H is AP only and not an LLMD. He is a wonderful and kind man and brilliant at writing letters to non believers!!
So my problems of getting around the GP and Rheumy were really through my GP being educated and willing but mainly because he had suggested the letters. If the Rheumy is happy then it follows that the GP will be as they work hand in hand with your care. They initially need to know something about AP because if it comes out of nowhere they will give a knee jerk reaction and that will probably be a no.
My son had only been on Doxy for 4 weeks and his CRP results went from 64 to 33! He is now at the six week period and I really do believe I am starting to see small changes. Blood results of course are confirmation of it working.
I wish you every success John.
Caroline.
Hi Caroline,
That is so fantastic to hear about the letters Dr H wrote and the positive effect they have had. Woo hoo for Dr H !!! :roll-laugh: I agree he is a wonderful and kind man. It is also great that I seem to be reading more and more stories of people on this board in the UK having success with listening and caring GPs. All those who can be persuaded to read 'the book' seem to end up believing in it, which is reassuring.
That sounds like an excellent response that your son has had to the Doxy already !! I do hope that the improvement will continue, and those small changes will become much bigger ones !!
Best wishes, Katie 🙂
Hi Katie,
We have been incredibly lucky.
My son's GP is also the most lovely and kind Doctor I have met. He really,truly cares about my son and that is a good feeling to have. Persuading medical perfessionals to come out of their comfort zone is the hardest thing to do but the letters DR.H sent had an impact that was quite amazing!
The relief I felt when they ok'd the treatment was enormous so I know where John is at the moment and hope he gets some letters sent too.
Take care Katie.
Caroline.
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