Hi, I'm New

[Anonymous]

Hi Everybody.

I'm so pleased to find this web site. I have had undiagnosed inflammatory arthritis for probably 20 years. Believe me, I tried to get a diagnosis for my hip pain, but never got it until last fall, when both hips had already been destroyed.

In December, 2007, I had my right hip replaced. I will probably get the left one done later this year. My orthopod suggested I really need a rheumatologist. I had my first appointment last week and he's a good guy.

Our working diagnosis is either psoriatic arthritis or ankylosing spondilitis, and also osteoarthritis (hands).

We agree there's no way to expect to save my left hip. To start he increased my neurontin to 600 mg, 4 x day and plans to continue to increase it one or two more times.

He's started me on glucosamine, chondritin, lovaza, and bromelain. He wants me to read about  and consider Embrel. While doing that, I ran into this site and feel much more hopeful.

Mind you, I am allergic to a bunch of antibbiotics, so that's scary. Though I can't take Doxycycline,  I never used to have any problem with Tetrcycline.

My doc claims to practice complementary medicine, so hopefully his mind will be open enough to humor me and let me try this.

Like all of you, I've had so much pain for so long that I don't even begin to register most of it. :headbang:  I get a lot of relief whenever a little of the pain goes away.

So, good to join you. I look forward to watching your posts.

Sallal

 

[linda]

Hello Sallal,

I've had PsA (psoriaitc arthritis) for 20 yrs as well, I found out about this protocol about a year and a half ago. There are some information brochures, articles and studies at this website that you and your doctor can read, also a page with testimonials of patients who have gone into remission. Click on the Home button and then on education or communication to find this information. We have a new page for our personal histories as well. Since you have been sick for so long, it may take you longer to see improvement. You should read the book, “The New Arthritis Breakthrough” by Henry Scammell, about Dr. Thomas McPherson Brown and his work with antibiotics and autoimmune diseases. You can also request a list of doctors in your area at this site who use this protocol. If none are near, there are a few doctors who are very well known thruout  the states who practice AP, like Dr. S in Ida Grove, Iowa, who will treat you once and then work with your home town doctor.
Welcome to the RBF bboard,

linda

[Anonymous]

Thanks Linda.

I did find the topic for personal histories but it wouldn't let me post–not authorized. And my email to the “doctors” email came back!

You say that you also have PsA. I'm wondering, has the protocol worked for you? It all makes sense to me already. And just thinkl, they've recently realized that antibiotics work for ulcers.

Part of why this approach is appealing to me right now is that if I work to take Embrel (therefore taking down my immune system) it could be a real problem until at least 2 years past my hip replacement(s).

 

Sallal

[linda]

Hi Sallal,

I was on AP for a year, but I have had to temporarily discontinue the treatment due to stomach problems. I've been on NSAIDS and prednisone for 10 years, and my stomach was already damaged before I started taking zithromax. It was just one drug too many, I'm still having quite a bit of trouble with my stomach even tho I've discontinued the zithromax and mobic. When my stomach heals I will return to AP, but I'm hoping to be able to use a doctor who provides IV antibiotics so that I can bypass the stomach.

For the year that I was on AP, I began to see improvement at about 4 months. I then increased the dosage and the result was a really bad herx reaction, so I went back to the original dose. About that time is when my stomach got really bad, I tried to stay on the abx but after a few months I had to stop. Mine is not the best example on which to base your decision because of complications created by other meds. If anything, I'm an example of why AP should be started early. In my case I didn't know about AP until app. 2 years ago. If you decide to try it, understand that you will have to be patient; it may take a year or 2 before you see any significant results. In the long run you will be better off; we make antibodies against the biologics like Enbrel which cause it to lose effectiveness over time. Supposedly this is prevented by taking methotrexate with the biologic. The biologics work very well but carry with them potentially dangerous side effects. Although not without side effects, AP is much safer.

There are many success stories from patients who have been sick for 20 yrs or more, so don't let that discourage you. Good luck,

linda

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