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Hi lemons,
The following people (more recent posters) are from the UK. You can try searching their posts and/or PMing them:
Joann60
Rosey UK
Patricia.Ann
WAYNE HARGREAVES
Lucy
I believe the last 2 on the list have experience at BreakspearBe well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Lemons,
I am from the UK – North East 🙂 I have been taking AP since September 2011. I have to say when I started my journey I was very, very sick – in bed only able to move my head – in excruciating pain. You will see in my ‘signature line’ that I have been on prednisolone (steroids), morphine and celebrex ever since. I initially tried plaquenil and sulfasalazine before I discovered minocycline. I still have a lot of pain and swelling but I am absolutely convinced that the minocycline is stopping me from deteriorating any further.
My rheumatologist prescribes for me. He is fabulous and I am so lucky to have found him 🙂 Without him I am certain I would have been railroaded into giving the even more toxic drugs a go – eurgh. I was on 30mg steroids to start with and now on 7.5mg. Have tried two or three times to decrease from this but it leaves me in agony. My next try is going to be homeopathy and I am hopeful that will give me enough adrenal support to get my steroids down. Until I can do that I don’t believe the mino can work effectively. I am also juicing which I believe helps, cutting down on dairy and gluten (eventually cutting them out). Did you watch Joe Cross’ Fat Sick and Nearly Dead movie a few weeks ago?? He has am amazing story and seems such a genuine man. He is coming back to the uk on a tour mid September to mid October. It may be worth you going to see what he has to say. It is all free. I can’t wait to meet him!!!
How about you Lemons?? Do you have a supportive rheumatologist or GP?? This helps enormously. I can’t say my GP is supportive. Sadly, my original GP who was right by my side medically speaking left the practice so I rely on my rheumy completely. He really is a gem.
You will get tremendous support from this site. All here are encouraging and want nothing more than to help and support. Sharing their knowledge freely and willingly. I do feel it has been a ‘life saver’ for me 🙂 Stick with it! Dr S, the Roadback volunteer AP doc, also gives advice freely by email. The team have his email address if you don’t already have it.
Take care and I hope for you better health.
Patricia x
Hi Patricia Anne, thanks for getting back to me. You are so lucky to have a nice rheumatologist, mine is bloody horrible !! He lost his temper when I refused methotextrate and suggested antibiotics. My doctors surgery is so busy that I never get to see the same one. Is your rheumy an NHS one? Mine is and he was so furious that I wouldn’t take anything other than a low dose of Plaquenil he has put my next appointment down for February next year. He said all the usual scary things about me being in a wheel chair if I didn’t do what he said, but I cannot face the thought of going on the repulsive drugs they push on you. Its a depressing situation when the medicine scares the patient more than the disease ! What I also don’t understand is the way people on other sites are so indifferent about injecting themselves with biologics. What are they ? can anyone tell me whats in them. The fact they have to be kept in the fridge to stay alive seems a bit creepy to me !! What made you decide to go on the ap route? How did you get your rheumy to agree in the first place? LEMONS X
Dr S, the Roadback volunteer AP doc, also gives advice freely by email. The team have his email address if you don’t already have it.
Hi Patricia, lemons – just to clarify: Dr S does very kindly offer advice and help by email and will do the same with a patient’s doctor. However, while he is, indeed, featured in Dr Brown’s book ‘The Road Back’ (chapter 27, page 241 – now included in the Henry Scammell book ‘The New Arthritis Breakthrough), he is not a volunteer for Roadback nor officially associated with the Foundation.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Oops – sorry Lynnie 😳 thought Dr S was ‘classed’ as the Roadback volunteer Doc – thanks for clarifying….x
Hi again Lemons 🙂
My rheumatologist is indeed an NHS one – he is fabulous and I am very well aware that he is in the minority. A lot of rheumatologists believe in hitting the RA hard with all the usual drugs – plaquenil, sulfasalazine, methotrexate – i guess that is what they are trained to do and believe in. This is the route my rheumy started me off with ( plaquenil and sulfasalazine – he is a rheumatologist after all!!!) but I had awful side effects with both of these and this led me to my research. Methotrexate I couldn’t be given because I have autoantibodies to my liver and mtx is harsh for this. I have always been an ‘alternative’ kind of girl and seriously didn’t want to go on the biologics – they frighten the life out of me – so was desperate to try AP when I found out about it – after all sulfasalazine’s main component is an antibiotic. I am not sure what is in the biologics but I know they are ‘hardcore’ drugs which I would rather not take if I don’t have to. I am sure some people don’t have an option. I know I would prefer not to take the steroids but I didn’t feel I had an option at the time and we can only do the best we can do 🙂 It would be nice though if you could at least try the AP to see if it helped you.
I know I have been very fortunate – my medical consultant who I have to see regarding my liver (although everything seems to be doing fine with that at the moment) didn’t agree with the antibiotics either but my rheumatologist stuck with it regardless and my CRP has come way down at my last blood test to six from something like mid twenties!!! My ESR is still higher than it should be. It has been a long slow process and I still have a long way to go but I am prepared to stick with it as long as I don’t deteriorate 🙂 If my NHS consultant can prescribe for me then it is definitely possible for you. The minocycline is given to teenagers for their acne. Sadly, there are doctors who aren’t comfortable with prescribing something they are not familiar with and aren’t prepared to become familiar with it either. There used to be a doc in Guildford who would prescribe but he is now retired so I feel here in the uk we are a bit stuck unless we can get an nhs doc on our side.
Where abouts do you live lemons?? If you would prefer not to say I completely understand or you could pm me if you would prefer to 🙂 Perhaps you could send Wayne Hargreaves a pm 🙂 He is very helpful and may know a rheumatologist or doc in your area that may help you. He may be able to recommend whoever is prescribing for him.
I can really understand your frustration. RA is no joke and we are already vulnerable. We certainly don’t need the medics to be downing on us. I am so sorry you are going through this and if I can help in any way at all please give me a shout – I will hear 😉
Take very great care
Patricia xx
Hi Lemons; I live in London and just started AP with a private clinic in Hemel Hampstead, where in fact, I was diagnosed with Lyme. I am now on doxycycline ( supposed to be on 400 but still only on 200). I think you might also have better luck working with GP ( mine was willing to put me on antibiotics of RA) as most rheumy that I have come into contact with here are awful!! Pls let me know if you need more info on the clinic. Good luck. Lorena
Hi Lorena
I live in Berkshire. I have booked an appointment at the clinic in hemmed hampstead. I too, have RA . I would like to know anything you can tell me about the clinic please.
SandraHello Sandra, I see an AP doctor at a different clinic here in the UK. The Hertfordshire clinic you have an appointment with is only 15 miles from my home , but I chose not to go there. If you would still like more details I can send you a personal message with info.
Hello Sandra, I go for blood tests on the 25th then have a follow up appointment with Dr A in December. Depending on the results he said he would up my dose of Minocin or talk about me having IV infusions. I hate, and I mean HATE needles so Im dreading blood tests so the thought of IV is nightmarish !!!! As for how Im doing so far, I keep realising that I can do stuff, I opened a jar of pickles yesterday and at the weekend a screw top bottle of red wine. While im typing this Im lying down on my side, propped up with my elbow. I couldn’t do that 2 months ago.I look better aswell, dark circles have gone from under my eyes and my depression is not as black. I had lost interest in what I looked like but past couple of weeks Im plastering on make up again ! Still have inflammation but I am seeing some changes…………. 😯
That is Great. I see the Doctor on Monday. I started 100mg Mino x2 daily, so maybe I started too high? I have had some incredible days, back to the real me before diagnosis. I have also had some terrible pain.Either for a day or staring in the evening. I am very excited. I am on humira also. Have been for over a year. I was started on plaquinil but had side effects.
Cant wait till Monday. Is the doctor experienced at this protocol?? My gp is brilliant but I see him privately.x
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