RA (and Lyme?) in Northern VA

[Carrie-RA]

Hi,
My previous personal history has disappeared since the site went down. Recreating here…with some additional new questions at the bottom of the page.

History:

Diagnosed with RA in 2004 (by a traditional Rhuemy) and started Hydroxychlorochine (Plaquinil). That drug kept me fairly symptom free (except for morning stiffness in hands/feet) for about 5 years. Then a year ago, my pain levels suddenly ramped up. I had stopped the Hydroxy due to intestinal problems (which I later found were from a bug I caught from bad spring water on a vacation …and not the hydroxy). The pain was focused mainly in my feet.

Then I read the Road Back book and bugged my Rhuemy to prescribe Minocin, which she did with reluctance and skeptism. She wanted me to start Methotrexate. I did NOT want to do that.

I started the Minocin in May 2010 (MWF) but the pain levels got progressively worse. I got to a point where I could hardly walk for the pain. On July 4th weekend, I had an alarming swelling in my legs ankles and went to the doc and got Prednisone. The addition of Prednisone helped my pain/swelling somewhat, but I was still having trouble walking. I needed more help.

In August I read some books about diet and RA, and did some internet research. I deciced to try the Raw Food diet. After about 3 weeks on that diet (still continuing the Prednisone), the pain started to subside. However, I couldn’t keep the diet up because I got very sick (without too much detail let’s just say it was intestinal-related issues).

Additionally, I found an Alternative Rhuemy (some of you know her), and began treatment under her. Surprisingly she was AGAINST AB therapy with Minocin and against the Raw Food diet. She feels that RA is just a symptom. She did extensive bloodwork and is currently treating me for Lyme (even though it was not an overwhelmingly positive test result). This doc is known for her Lyme focus, so I’m not 100% confident in this diagnosis, but I said to treat me anyway because my RA has never been “classic” RA with nodules and all. I am willing to try anything at this point.

She’s had me stop the Minocin and Prednisone and started me on Amoxicillin (ramping up to 2 caps, 3x day) and Doxycycline (1 pill, 3x week). She also said I could start Hydroxy. again, which I did. I am still ramping up on the Amoxi. Immediately I started having stomach issues (esophigal pain, burping)…not sure why that is. Additionally, I am taking a TON of supplements (not kidding here…it’s about 4 handfuls of pills every morning and then again in the evening)…don’t even want to list them all here in great detail, but the short list is: probiotics, detox/liver support, MSM, antivirals, silver drops, DHEA, Bio-inflammatory mix (this one works!), kyo-chlorella, fish oil, Vit D, and I’ve done two Candida kits. Plus aloe vera juice and soon starting swedish bitters. (NOTE – been taking the supplements for several weeks before starting the Amoxi and Doxy, so I know they are not causing the digestive issues).

Additionally, I’ve hired a nutritionist to help me sort out what I should be eating. She has RA herself, and has put it in remission with her diet and drug combo)…which is why I’m going to her. I’ll try to share what I learn from her over the next few months. Initially she has me avoiding gluten and dairy…that is our starting point. Will keep you posted.

Thanks everyone. I LOVE this BB and was so lost when it was down for a while. The support and info sharing here is AWESOME!

-Carrie

QUESTIONS:

Can any of you advise me on what might be causing the esophigal pain/burping? Is that the Amoxi or Doxy? What can I do about it? Should I be taking a Previsid or Tagament with the AB?

Also, I’m supposed to be taking pro and pre biotics, but I’m not sure WHEN to take them as I’ve read that taking them with AB will render them useless.

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