Also I had complete mobility of my shoulders and my neck was not stiff at all. Normally in the night I can't turn my head with my neck and I have to turn my whole upper body. This is because I take Prednisone at 7:30pm at night and always wears off by this time and takes til the next morning for it to kick in again. I don't know why I have such a slow response to the Prednisone when I take it, but I am really hoping to keep having success with the Minocycline and get off Pred completely. I was a bit worried at first that the Pred would affect the success of the Mino, but I couldn't find much information on the internet about it, and decided to just go ahead and try anyway.

Keep it coming Mazensmummy... any further news?

Kam x

Definitely! So far I have taken 3 doses of Minocycline and I am feeling probably 70% better. Even when the Prednisone wears off by 7:30 pm at night I can make a full fist or at least 95% closed, there are two fingers that don't seem to close completely but I think they are damaged. I can also straighten my arms and turn my neck. Everyday seems to get a little bit better, I was still having the pain when walking in the night, but that has 95% gone tonight. I also tapered the Prednisone another 5mg.. not sure if I am doing it a little too fast..

I know it's definitely the Minocycline working because I felt changes happening direct and I literally couldn't function at all in the night while I would wait for the Prednisone to kick back in. I've been reading so much about the AP protocol and I am so convinced that it can help so many people. I am not articulate at all and have no idea how to explain to people what I'm reading, it really frustrates me because it makes so much sense and I want to see people getting better...

I'm not sure if you have seen this article, but it really explains the theory and idea so well. It doesn't ask us to buy anything or try to scam us into anything. The forum volunteers on the roadback website are really helpful and they can send you a list of all doctors who do the AP protocol in Australia. I really hope you try it.

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/397.html

http://www.thearthritiscenter.com/arthritis_info.htm

This is also a great link for anyone interested.

I'll let you in on a secret... I started it yesterday, after getting my last lot of bloods out for mycoplasma testing (had to wait a few weeks as I'd been taking olive leaf extract and anti-microbials can give false negatives - frustrating!) ;-D

If I have some kind of dramatic result then I will push back the infusion if I can, to give AP more time. Early days and no decisions yet. I felt better yesterday than I had for a while, but have to give it more time to see. If DEFINITELY sounds like it is part of the puzzle for you!

By the way, you sound perfectly articulate Mazensmummy! Just post your experiences and people will find it. 70% better... I am so happy for you. Bet you are really enjoying doing things with Mazen right now!

Speak soon
Kam x

Wow, that's fantastic!!!!!! Please keep on posting!!!

I'm so happy to hear that and I wish you the best results, that is so great. I really am shocked at how my symptoms improved so quickly, it really is truly bizarre to suffer so much and then take antibiotics and feel better? I know that a lot of people report that it takes a few months to work for them, but I think a lot of factors effect how quickly we react to the antibiotics, like how long we've had the disease, and how long we've been taking immunosuppressants.

The thing I wonder is how many RA docs actually test their patient's synovial fluid for Reactive Arthritis or Septic Arthritis. I think a lot of docs just throw around the diagnosis of RA and suppress the symptoms with drugs without looking too much into what was the trigger. I know that my symptoms are classic of RA, but there are so many different types of Arthritis and it is known that joints can be infected.

I'm sure there are other triggers that cause people to have inflamed joints other then infection, but I don't believe it is because the immune system just suddenly goes haywire and attacks itself.

There is something dodgy going on with immune diseases, I don't know how to explain it.. something to do with money, the FDA, and the economy, and keeping us sick so that we keep spending to make ourselves better? I don't know.. just speculating... lol thanks for the rant.

I will keep you guys updated.

"There is something dodgy going on with immune diseases"

So true MM... read "The Paleo Solution" (Robb Wolf), also look at the GAPS diet, Body Ecology diet and Annesse Brockley's latest book on autoimmune. Basically, we are harming our bodies by feeding it processed foods, even "good" foods like wholegrains - we are not designed to eat these foods and they damage our gut and illicit an autoimmune response. I've been digging into this all year (I am studying nutrition at uni and am beginning to wonder whether I should bother!). The $ factor is that these damaging foods yield huge profits which is closely linked with the investment by governments in agriculture. It's a huge industry with many interdependencies - no investor (governments included) want questions raised. If I followed the AGHE (5-11 servings grains per day) I would be enormous! The other problem is that in the past these foods were prepared traditionally (Annesse touchs on this) - enzyme rich foods like raw dairy anfd fermented sourdough. Our bread and milk is dead and very harmful to us. The GAPS diet book goes into alot of detail explaining how this happens. Legumes are the other food that is very hard for our body to break down and utilise.

I think the RBF suggest the a paleo-type diet to maximise the effects of the AP. I'm still waiting on the book - it may arrive after Xmas now.

Re testing synovial fluid, I asked this question of my rheumy, but he said you need quite a swelling to extract any (I didn't have enough). You are totally right though, I agree more investigation should be done to determine the physiology of an individual's expression of "RA" - and treatment therefore tailored. I also agree an immune system is unlikely to go nuts one day for no reason - everything in the universe can be explained by cause and effect, we just don't understand the cause yet.

Keep getting better!

If there was a "Like" button, I'd like both your comments. IT's so refreshing to hear the words from other's mouth, rather than my own.
hugs,
Sarah

It's Mazensmummy, I felt like changing my username lol.

I'm still really happy with the Minocycline. Initially I felt like there was a big burst in my improvement, then it plateaued a little and now I feel like I am still improving but slowly. I am still herxing but it's definitely not like RA pain for me, and I feel achy during the day when the Prednisone is still in my system, I feel like this achyness is the "cell die off".

Also in the day my wrists are swollen but normally when I was not on mino the Prednisone would take down the swelling and then by the time the Pred wears off my wrists are swollen by 7:30 in the evening. This type of swelling is weird because I am still able to move my wrist and there is no pain there, so I don't think it's the RA I think it is the herx reaction?

I am about 2 weeks in now I think and really happy with how things are going, I can function and take care of my baby, but still have a way to go. I am also down to 15mg Pred now.

A couple of changes I have made to my diet include no processed meat, not because of the RA but because most contain sodium nitrate to make it look red and fresh and that causes cancer. I am putting grape molasses in my coffee instead of sugar. I don't know if you guys have that in America and Australia but I think it is like blackstrap molasses, it's so nice, and is full of calcium and iron and really easily absorbed. Here is a link about it, if anyone is interested.

http://www.todayszaman.com/news-265348-the-healing-syrup-of-anatolia-pekmez.html

I'm also big on spinach right now, I never realized it was such a "super food", and also I want to start vitamin D supplements and fish oil.

Hope everyone is well,
Take care.

Hey Mazensmummy,


Sounds like great progress. I would be super careful with yeast issues though. Minnocycline and prednisone both greatly increase your chances of having candida issues which will cause so many problems down the line. So just keep that in check. Easy on the sugar, or none at all, lots of yogurt, probiotics and super foods.
hugs,
Sarah

Thanks so much Sarah, for the info, I will make sure to incorporate all of that into my diet and hopefully prevent any yeast issues. I'm so happy with the progress. I will send another update soon.

Take care

M

Well done Rachael... make sure you eat your spinach cooked as it contains oxalates which block mineral absorption. I am also two weeks in, and have stalled my actemra infusion for another month. I am also on 2x200mg ibuprofen (morning) and 10mg pred (night) - i wish it was only 5mg pred, but I really need the 10mg to sleep. I have no idea whether I am flaring or herxing, but I feel pretty good for around 8 hours after taking the minocycline. Had some +ve results in my recent Lyme testing, but waiting to speak to the LLMD to understand exactly what it means. Still awaiting the mycoplasma results. Will keep you guys posted :-)

Stay well
Kam x

Thanks for that info Kam, I will make sure to cook the spinach from now on. I'm also down to 10mg of Pred now which is confirming for me that the mino is working because when I tapered to 10mg the last time I couldn't take it and went back up to 30mg. Another thing to report is that in the last 6 months while I was untreated I never had any good days, but on Friday I felt like 95% good. Every day feels different with the herxing, some good and some bad but tolerable.

Thanks again for all the advice guys.

Take care
Rachael

New update.. I normally take Naproxen because it controls the fevers that I get from the RA. In the past only a really high dose of Prednisone would control it, but not even 25mg would stop the fevers in the night until I started taking Naproxen. I am down to 10mg Prednisone at the moment and going to taper soon and yesterday I didn't take any Naproxen because I was going to try a painkiller in the night because it was Christmas and I was worried about taking too many things, and I didn't end up needing to take the painkiller and I didn't get the fevers. Also yesterday I didn't have any bread, so I'm wondering if gluten affects my pain levels.