need encouragement

[elee1222]

I had a disappointing visit with my rheum today. With more joint involvement and sky high inflammation, he wants me on MTX and a biologic. He said that AB were unproven and I was wasting my time. I am meeting with Dr. B in PA, next week and need some encouragement. Success stories are welcome 😀

[bonnielou]

Hi elee. I am so sorry you had a disappointing visit. Most of us have had those. Can you fill in a little more background. How long ago were you diagnosed? Are you on AP now? For how long? Is there any improvement? What else are you taking and doing for the disease?

My doctor was not supportive of antibiotics, but she agreed to prescribe them if I would also take plaquenil. I figured that was a reasonable choice, and plaquenil was one of the more benign RA medications. I started treatment fairly early in my disease cycle and responded pretty well. Within 6 months I was off of all pain medication, cut back the plaquenil and basically had my life back. It hasn

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[elee1222]

Hi Bonnie,
Thanks for your reply. My story is a bit like yours. The pain began in one wrist 5 years ago. Eventually went to an ortho who dx a ligament tear and I started PT. Fast Forward to last year when the pain and swelling increased after a move to another state. Saw a new ortho who thought it might be RA. Had all the blood tests done (RF, CCP, ANA, CRP, ESR) and was cleared by the rheum. Meanwhile I was working with a naturopath trying to find the cause and using nutrition and supplements to control the inflammation. I had surgery to repair the tear in March, where the ortho found extensive damage (worst she had ever seen). Despite an elevated ESR being my only marker, I was told I had erosive, inflammatory arthritis.
Not wanting to use any meds, I continued with nutrition and various supplements. Following surgery in March and a Medrol pack, the inflammation spread. Over the past few months it has affected other joints. So, here I am. I started Plaquenil 2 weeks ago (couldn’t tolerate 400 mg, so backed to 200 mg) and will start Meloxicam tonight. I’m trying to think of all the stories in the book, and not my rheum’s negativity. He is very understanding, but does give his opinion.

Elizabeth

[Joanne NJ]

Hi Elizabeth, I wanted to chime in as I am currently doing AP for the second time. The first round back in 2010, (for 1 year) brought me remission. I had to do AP with my primary doc, as no RA docs would work with me. My primary was amazed at the results and I felt wonderful…I stopped due to a huge sudden flare and my doc wanted me to see an experienced AP doc. I could not find one so went a while with no meds but Motrin and occasional prednisone. Well I continued to do ok, but then things creeped back and it was time to try again. I decided to try and find an AP doc. One month ago I saw Dr. B (I assume the same Dr. you are seeing), and I am back on AP. He truly believes in this treatment, and I feel he knows what he is doing, so I would assume he will oversee your care and prescribe the antibiotics. And I am happy to say that I have been improving again! I had a rough start, huge flare about 2 weeks ago (herxing?) But this week I have noticed a general overall daily feeling of improved symptoms, I have been walking normal, decreased fatigue, steps are not bothering me, little things that I remember from my last round of AP. Hope this helps and you have a good appointment with Dr. B

[dixiegirl]

My visits with my rheumy scared me to death… telling me about all the joint destruction I had already experienced, etc.
She denied that food and AP could help my RA.
Instead of taking my rheumy’s advice, I changed my diet and did AP anyway, and I have been in remission for about a year (it took several months on AP to reach this point).
There is hope that AP will help you! I was skeptical at first, considering that AP only helps some people, so I probably wouldn’t be one of the ones it helps. But I was wrong.
Keep it up. Take courage. AP works for many people.

[Maz]

@dixiegirl wrote:

Instead of taking my rheumy’s advice, I changed my diet and did AP anyway, and I have been in remission for about a year (it took several months on AP to reach this point).

Dixiegirl, this is such fabulous news! Would you be willing to write a testimonial for Road Back to put on the main site? If so, would you be so kind to send it to:

https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html

It can be hard to re-visit all the pain when writing one’s story, but it’s such a beautiful way to pay-it-forward to others, like Elee1222, who may not visit the forum and those who do. Thank you! 🙂

[Woods1977]

Hi elee1222,

I too, am familiar with doctors looking at me like I

[Author]

Posts