as well as Sjogren's. I am very suspicious that RA
is actually from Lyme. Any thoughts?
ArtnSoul
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Yes, I was diagnosed with RA by two different rheumatologists and another one was suspicious of it. My LLMD doesn't think I have RA, he thinks it's inflammation or arthritis from Lyme.
Doctors diagnose what they know. So a rheumatologist will diagnose things like RA, a gastroenterologist will diagnose stomach probs as Ibs ( just examples), whereas a LLMD looks at the whole picture and peels away symptoms and treatment much like an onion. He or she has to be a "detective" and figure out the cause of many complex issues rather than just one medical specialization.
Posts: 1431 | From USA | Registered: Mar 2015
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willing to start taking some of the drugs he wants
me to take. Right now he has me on Plaquenil. I
would much rather take the antibiotic protocol
than take the RA drugs out there
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
That was my decision, too-- not to take RA meds until I got into a LLMD and was evaluated. I chose the antibiotic route and it has helped.
Posts: 1431 | From USA | Registered: Mar 2015
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Go to their FAQs. Question #11 asks how to find a doctor. The answer gives you a link to their request form. Send them a request and they will send you a list of doctors in your area.
A friend of mine did this. I picked from that list a doc who also knows lyme. The doc cured my friend of her RA (diagnosed by a rheumatologist and her primary) with special anti-inflammatory supplements he carries at the office and by testing her for food allergies and telling her what foods to eliminate from her diet.
No more hands that look like balloons! No more off-the-chart pain every so many days due to a flare! It is all history.
He didn't even have to go to the antibiotics, although he said he would if necessary.
This holistic practitioner is highly thought of by some top chiropractors and others in the area who appreciate holistic medicine. Try to find someone like that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
My rhuemy gave me low dose doxy and plaqunil just to get me out of his office..was nice enough to refer to id duc and not give steroids though
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Hello, i have "RA" as well and was actually diagnosed with that before Lyme diagnosis. I was on all the RA heavy meds (Humira, Enbrel, Xeljanz etc). None of them really worked (other than Xeljanz, which helped but lots of "leftovers").
I finally had a +Lyme test, did an extensive Antibiotic Lyme treatment (oral and IV) and everything (including arthritis) was significantly better. In this arena i was considered to have Late Lyme with Lyme Arthritis.
Now that I'm off all antibiotics (and have been for over a year) I have had a return of arthritis. The LLMD opinion is that i have been "left with" RA as a result of immune system gone wacko, and the current thinking that Lyme can rarely be fully eradicated.
I haven't been back to the Rheumies (i saw 5 in total) since because they can't get past various test results (including the anti-ccp for which i'm positive...have you had this?) and actually look at my whole picture. We are not our test results!
Bottom line is, RA is really just a label for an inflammatory condition (not to minimize it's potential for severity). The Biologics won't cure it (as you know); the better long term fix/approach is to find out WHY and readjust the immune system. I strongly believe that we will soon see an end to RA treatment as we know it (when people become ill from the meds) and a move toward the heart of the issue, the WHY, and correcting. This movement is happening with all Autoimmune problems as I'm sure you've learned.
Problem is yes, anything affecting the synovium can cause damage so time is critical. Your best bet is to try and get with a LLMD/Integrative Med Dr. who can look at your situation holistically and try and find the core issue, and treat.
I'm currently doing LDI because the theory behind it makes more sense to me than anything else. I haven't yet found the "magic dose" (which all success hinges on) so whether or not it will shut off the RA remains to be seen. But, I've been told it can and will, and I'm hopeful.
Doing antibiotic treatment through the Rheumie is fine but its unlikely that they have the expertise to integrate the Lyme protoccol combos (I'm assuming you have Lyme...why you're here, right?) that will bring you wellness and settle the immune system. Minocycline, the one they like due to it's anti-inflammatory properties, can only do so much.
Good luck. The RA/Lyme thing is complicated not only because it involves different specialties but neither really knows the other so you have to figure out how to "bridge" this on you own and forge your own path. But, this is pretty much a theme in Lymeland....right? Best wishes for recovery:)
posted
sorry, forgot to mention; are you taking LDN? This has really helped me, it has both anti-inflammation properties and immune modulation (2 of the biggies for people like us). You likely need to get that from an LLMD/Integrative Med dr.
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