Lyme or RA.

[maggieh]

I am so glad I found you folks! I have been battling Lyme for more than 15 years and two weeks ago was told I have RA. I have a bottle of Methotrexate on my dining room table , never opened it because I am terrified of suppressing my immune system! I have explained this to my Rheumy but she insists if I had 30 days of Doxy I can’t possibly have Lyme any longer 😡 . I need someone who will listen to me! I had dizziness for many years before the joint pain and swelling in my hands started. Please tell me more about minocycline(sp?) Finding this site has made my day!

[Lynne G.SD]

Hi Maggieh;
I hate to say it but your doctor is full of bologny.Use the “search” next to the”reply” and type in Lyme.You will find mountains of info.Look for posts done by our all knowing Maz.This should keep you reading for the next week.

[Calida]

@Lynne G./SD wrote:

Hi Maggieh;
I hate to say it but your doctor is full of bologny…..

😆 I agree with Lynne, maggieh! Maybe it’s time you found an LLMD (Lyme Literate doc) who can test properly and address the underlying Lyme and possible co-infections. I thought I could just treat the autoimmune disease with mino but Lyme really throws a wrench into the works. But don’t worry, an LLMD usually knows how to cover all the bases and will tailor your treatment to fit your particular version of RA/Lyme. I’m having great success after just 3 months of AP and that’s because my LLMD went straight for the Lyme and hit his target.

Check out ILADS.org, great information. Many of us here are dealing with a Lyme trigger for our autoimmune disease so you should feel right at home 🙂

Cali

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Susan LymeRA]

I agree with Lynne too. Also, ticks give us so much more than just Lyme. All confections, yeast and heavy metals need to be addressed as well. Yi-Yi-Yi there is so much to it. But today I am symptom free. Find a really good LLMD.

[Karel]

Maggieh, sorry to hear your story. Mine is similar. If I have lyme, I was possibly infected 8 years ago. I am doing all I can now to get the most positive confirmation via both regular labs and Igenex. Putting it all toghether and then draw a best possible conclusion. I have used MTX for periods and initially it worked for 30%, but it also lowered my platelets and made me feel very tired. Tried sulfasalizine as well, which didn’t do much. This was all before I went to Igenex, with an Integrative MD supporting me, and found out that, with their testing and standards, my blood was positive for lyme’s. You are ‘sure’ you have lyme, is my understanding? If not, I suggest to re-test with Igenex, but you need a doctor signing for it, which doesn’t have to be a LLMD. I have been on Mino for 4 months and it did improve the bigger joints (this was when my focus was on mycoplasma), which were not a big problem to begin with, but the small one’s got worse. I understand now that Mino or Doxy are just one part of the ABX that you need to reduce/resolve chronic lyme. Don’t expect the world from it, but is has its specific role in the treatment. From what I understand Mino and Doxy are both tetracyclines and function similarly, whereby the Mino might have a slightly better penetration rate, but also poses more risk in creating some quasi lupus issues and skin discoloration.

Although it may be over the top in your case, my suggestion is to get labwork done by Igenex so that you have a baseline for discussion. If there is long waiting time to see a LLMD (pretty normal I believe these days) than ask one of your other docters to sign for the bloodwork. Its nice to walk into the LLMD’s office with that already done. Saves some time.

If I may ask, your RA is typical symetrically small joints (fingers and toes) and RA factor / Anti CCP positive or negative? I am asking because Lyme arthritus is an arthritus form which is different from RA, for what I know, because it tends to be located non-symetrical big joints and moving. Not sure if your RA has been diagnosed on the classical symptoms or is the result of ruling out the other one’s.

I am very interested in your next steps and hopefully progress. Please keep us updated if you want.

Success!
Karel

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