Moving house and thriving

General Blog
1

I have just finished a massive few weeks, painting and renovating in our new house as well as moving house. I cannot believe my body has held together without any flares. In fact the day after lugging furniture all day my body barely felt sore at all. I am 100% convinced that the minomycin is the difference. A few months ago I would have fallen apart putting my body through such stress. Although I still have the same old swelling and stiffness, the other minor niggles and soreness have not effected me at all. I am even contemplating getting back to gym again....

I did a trial prior to the moving house period through a dietician to see if I had Salycilate sensitivity,I did not notice any difference on the diet so I can rule that out. I had a scan on my salivary glands and it appears I have altered function and perhaps Sjogrens Syndrome. Anyway to be confirmed next appointment with the immunologist...

On another note, I have recently read about a new supplement called Anatabloc. It is getting excellent reviews from arthritis sufferers. I am probably like most of you and tried every different homeopathic supplement on the market. I have never had noticeable improvement on any. I have ordered my first batch to try, it costs $100 for 200 tabs...ouch, but I will do whatever it takes to get back to full physical activity and perhaps you may want to look at it and see if it is something you want to try.

I hope all of you keep on fighting, learning and persisting in finding what works for you.

Dave

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Hey man I was just wondering how your AP treatment was going. I am 30 years old and I was just diagnosed with PSA in February and I pretty much how the same exact symptoms as you, swollen second toe on my left foot which caused a serious case of synovitis on the bottom of my foot to where I could barely walk, also hip pain that comes and goes with groin pain that feels like a pulled muscle, this hurts sometimes so bad I can barely lift my leg up to get in and out of my car. Anyways I was curious has to how you were doing with the treatment. I have been reading the book as well as doing a lot of research on the road back foundation and I am going to approach my family doctor hopefully next week. I just can’t bring myself to give into the hard stuff just yet. Are you doing the IV treatments or just the oral? Any input you have on the treatment would be helpful.

Thanks,

Wes

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G'day Wes,

I am taking oral 50mg Minomycin twice a day, Mon, Wed & Friday only. I was initially taking it daily but I was told to use this protocol and I backed it off. As discussed, the only other medication I am taking is Naproxen 750mg, which I may take two days in a row, then have two off, probably averaging every second day.

Funny you mention the groin pain, previously before arthritis diagnosis I thought I had pulled a muscle out at times, but it came and went so I knew it wasnt a pulled muscle and then I had the SI joint pain develop more strong and this became less of an issue for me.

I wouldnt call taking these antibiotics "giving into the hard stuff". I am not sure what other medications you are taking, but I am hoping to wean off the naproxen if I can keep getting improvement before I would stop the antibiotics as the naproxen or other NSAIDS have more damaging long term side effects in my opinion. If you try the antibiotics and you do not get improvement, you can stop at any time. I had a break for nearly a week trying to detox and that bad old feeling started coming back and my body stiffened back up. You can take the antibiotics in unison with dmards or other treatements, but please get your own medical advice on this.

I am not experiencing any side effects with the antibiotics apart from having great skin and more of a glow and also I have not had the "herxing" others described. I am taking probiotics on the "off days" and aware of the risks of candida overgrowth with the long term antibiotic use.

I would try to get a doctor in your area who is experienced with this treatment. The road back forum can help you there. Get any bloodwork copies sent to you so you can keep your own records.

The biggest improvement I felt was about two weeks in and it was more mental than physical. It felt like a weight was lifted and my energy and mood increased back to normal. I could feel that I stopped getting worse and when you get hope for improvement psychologically it is such a huge boost.

I did get diagnosed with Sjogrens Syndrome also, which is currently giving me dryer eyes and mouth than normal and the immunologist believes this is why I have had sinus issues for many years being dry and inflamed. The immunologist believes I may have reactive arthritis more so than PsA. The Rheumy does not agree. Either way it does not effect what I am doing with the Antibiotics.

I am attempting a gluten free and starch free diet currently to see if I can improve further and just generally having a detox. You will read a lot about leaky gut and candida etc as triggers for a lot of these auto immune diseases.

Anyway I hope that info helps you and I wish you the best in getting on the road back to a full and pain free life.

Dave

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Oh and I have been taking the Anatabloc for over a month and I have not seen any improvement. If you can believe the other reviews it is working well for many.

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Hey Dave,

Thanks for the quick response and your input. When I said the "hard stuff" I was referring to the DMARDS and biologics. I definitely believe that AP is a lot safer. I have read the side effects of the other treatment options and it really scares me that's why I hope the AP works. I really don’t want to have to resort to something dangerous.

I did try the road back foundation for some doctors in the Pittsburgh area but the one they referred me to no longer practiced in it so I am going to approach my family doctor, who I know on a personal level about it because I think I will have better luck with him than with my rheumy. I’m also going to look into going on a gluten free diet as well.

This whole experience has been pretty hard to swallow. I have a potential job offer that has been my goal my entire life. This job would be running intensive for about 6 months and now I feel that I will not be able to do it because of the pain in my foot. I really feel that I am letting my family down because this job would really make things better for us and I don’t think my wife really understands what I’m dealing with. Not that I was big on running before but I would run 2-3 miles at least 3 days a week along with going to the gym. I just recently started lifting again and man that does make me feel a little better. Well sorry to keep rambling. Keep me posted on your treatment. Good luck,

Wes

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A tip, if you can get the script of your local doctor and get a phone appointment with someone experienced with AP elsewhere that can help make a treatment plan work. That is what I ended up doing as I felt the doctor although had some experience, did not have as much as some others.

I can relate to the difficulty in accepting it. It came for me just after the birth of my first child and my work is physical and I had a lot of fear sitting in the back of my mind about getting worse and not being able to provide for the family,

I think nobody really understands unless they have something similar, ie a different auto immune disease. My wife is really supportive, but it did take a while, she thought I was a hypochondriac until I got the formal diagnosis.

Again similar to you I did a bit of running and did weights at gym and was probably the fittest and strongest I had been in my life before this all hit. I have tried to become more of a stretcher, eg Yoga (I hate stretching) now than doing weights, but I do want to get into the weights again. Ive lost about 15lbs since I stopped going to gym, I am a skinny build to start with!

If you are not already on any NSAIDs maybe you can try them to take enough of the edge of to function in the demanding new job. I find the NSAIDS work really well now I am on the AP, but I do want to get off them. As stated in the book, they seem to aid the AP in reducing the inflammation better than either alone.

Don't apologise for rambling....I feel I can relate to everything you are saying!

Let me know how you get on with the treatment. Once you feel that hope and optimism again it is a huge weight off.