RA and Lyme Disease

[pittRAlady]

I was just tested by my PCP for Lyme Disease and it came back positive, both the ELISA and Western Blot. I asked her what this meant for my RA diagnosis and both she and my rheumatologist said that it does not mean anything, just that I also have Lyme Disease. My question is, has anyone heard of someone having success with just the 21 day antibiotic treatment typically prescribed by PCPs, rather than the prolonged treatment. I have an appt with a LLMD soon. I am afraid not to use the antibiotics from my PCP, but at the same time do not want to take two more steps backwards before getting in with an LLMD. Also, I am RF and Anti-CCP positive. Have found alot of comflicting research on if Lyme’s can cause the elevated levels or if it truly RA. Can anyone offer what they know about being Anti-CCP positive?

[Maz]

@pittRAlady wrote:

I was just tested by my PCP for Lyme Disease and it came back positive, both the ELISA and Western Blot. I asked her what this meant for my RA diagnosis and both she and my rheumatologist said that it does not mean anything, just that I also have Lyme Disease. My question is, has anyone heard of someone having success with just the 21 day antibiotic treatment typically prescribed by PCPs, rather than the prolonged treatment. I have an appt with a LLMD soon. I am afraid not to use the antibiotics from my PCP, but at the same time do not want to take two more steps backwards before getting in with an LLMD. Also, I am RF and Anti-CCP positive. Have found alot of comflicting research on if Lyme’s can cause the elevated levels or if it truly RA. Can anyone offer what they know about being Anti-CCP positive?

Great job getting the Lyme testing run. It’s quite difficult for anyone with an autoimmune manifestation of Lyme to actually test positive on standard tests (it’s just so immunosuppressive and is a clever organism that manages to elude immune detection), so you’re pretty fortunate you have these in hand. Dr. B. was pretty on the money when you spoke with him by phone. At least this should help to encourage you with regard about which treatment path to follow and also confidence in him. 🙂

Quite a few people here share the same story with you RAPittLady, including myself.

I will PM you with the best answer we’re able to provide to your question on seropositive RA and Lyme that will be included in a set of new peer-to-peer patient FAQs that will be available in the foreseeable future on the RBF website. They haven’t been published on the website yet, so it’s just temporary that I’ll need to send this privately to you.

[pittRAlady]

Thank you Maz for all your input. I am upset to think that a tick bite set this whole thing in motion. But it sounds like this was likely the case for many others. Amazing that with one conversation Dr. B was able to tell what was going on. Going to meet him in only one more week. Started Doxy from my PCP 100 mg twice a day. Feeling better for now. I am just praying and hoping for remission.

[Maz]

@pittRAlady wrote:

Thank you Maz for all your input. I am upset to think that a tick bite set this whole thing in motion. But it sounds like this was likely the case for many others. Amazing that with one conversation Dr. B was able to tell what was going on. Going to meet him in only one more week. Started Doxy from my PCP 100 mg twice a day. Feeling better for now. I am just praying and hoping for remission.

I know…it completely sucks! Due to the fact that my PCP was completely ignorant about bulls-eye rashes being definitive proof of infection for Lyme and my standard test being repeatedly negative, I missed the boat of early treatment and wound up with very severe, swift onset RA. The irony of all this is that this was how Lyme was identified in CT in 1975, when housewife, Polly Murray, blew the whistle to the CT Dept of Health to let them know that there were was a very large cluster of JRA and RA in her neighborhood. It’s pretty interesting reading about the history of Lyme and how all the medical politics surrounding it unfolded and devolved from there. Since then, much of the politics have got out of control due to the rotten testing and the IDSA claiming it’s a “hard to get, easy to diagnose and treat” infection. This completely ignores those folks who never do get tested or are unlucky enough not to show antibodies for this tricky bug in standard tests and telling folks that 2 to 4 weeks of doxy is enough to “cure” them, when clearly, for some folks, this is not the case and the infection does persist. And, rheumies follow the IDSA guidelines.

Glad you’re feeling a bit better…take it as easy and do what you can while feeling a bit better to learn what you can do to detox, because this will help you to handle any herxing you might encounter. Herxing is a good sign the treatment is working…it’s how LLMDs gauge response to treatments they use. 😉

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