I started taking 100mg Minomycin Mon Wed Fri on starting 29th December 2011. I am still taking 750mg Naproxyn daily. No other medication apart from herbal supplements.
It has been just over a month and I would say I can feel a slight improvement. My joint pain and swelling has minimal difference, but the antibiotics have cleared up my sinuses which were inflamed most of last year. My general feeling of wellness has increased, possibly more due to having a low grade infection clear up. Maybe it is because I have a feeling of hope for some sort of improvement in the long term. This feeling of wellness is described in "The Road Back" book by Henry Scammell as one of the first changes when undertaking antibiotic treatement for Arthritis. I am being patient as it may take 6 months or more before I see an improvement in the joints.
I visited a 2nd rheumy a few days ago who was very thorough and found some Psoriasis on me that I never knew I had. Previously I thought I had none. He confirmed the same PsA diagnosis as my previous Rheumy. He did feel there were also some additional AS symptoms which did not match up with the PsA, so he feels I have a combination of the two types. I was secretly hoping the other rheumy had it all wrong and that I just had some type of reactive arthritis that would just go away.....but my fantasy ended pretty quickly. He was not strongly against the Antibiotic treatment but could not offer that as a treatment himself. He suggested I go on sulfasalazine, which I am holding off on taking just at this stage. Some people get allergic reactions and I would need ongoing blood testing to ensure I have no issues. It has an antibacterial action similar to the sulfur based antibiotics which is interesting.
I will be moving house in a few weeks time, which will test the body out, so I am unwilling to change up anything with the meds as I have been going reasonably well of late and do not want to risk any reaction.
I also had a phone consultation with a GP who is allegedly an expert in using the Antibiotic Protocol for Arthritis. She has RA herself so you would think she would be one to do her research on the best treatment. She gave some good advice and explanations on the dosage of the antibiotics and suggested some dietary changes that I had not previously heard of, such as low sulfur and salicylate. It is funny as this goes directly against the recommended meds from the Rheumy which are a sulfer and salicylate based treatment.
She works with in conjunction with a Naturopath and they do a lot of food allergy testing, looking at Gluten Intolerance and any underlying bacterial infections which do not come up in common blood tests.
They are in another state, so I had booked an appointment to see both but moving house will happen first and I will re visit them once I am settled in.
So I am keeping my mind open, but I feel I get offered more hope for improvement and finding causes through the "alternative" health providers. All the rheumy can offer is a drug of choice to patch up the symptoms, which is still a fallback if nothing else works for me.
Hearing some of your stories is both motivating and heartbreaking. It is so sad to hear about the lack of support from public health systems, particularly in the USA. I watched a documentary called "food matters" which is a reminder of the control that the big pharmaceutical companies have in this world. Another good movie to watch is "Food Inc".
Take care all,
Dave