Could I still have Lyme after being treated?

[Lisabuf]

Hi,
After reading posts here and checking on some Lyme websites, I am wondering about my RA and the possibility I have Lyme. I am in the southeast and we have lots of ticks (and deer) and I have been bitten many times. A few years ago (before my RA symptoms…hmmm) I was bitten by a tick and the bite area had the trademark bullseye ring. I went to my PCP right away, and she prescribed a one-month course of antibiotics, and said that would take care of it.
Fast forward to now: I asked my rheum (in August before starting Minocin) to test me for Lyme and she agreed, using the Western Blot test which she said was more reliable than the other Lyme test. She also said I did have Lyme if I had the bullseye, but that the antibiotic treatment would have resolved it. The WB test was negative, so I thought that answered the question. But now I’m not so sure.
If I still have Lyme lurking from that bite years ago or from another more recent one, would the Minocin help? I know the best precaution would be for me to see a LLMD, but I doubt there are any close by. Can anyone else share their experience and shed more light on this for me? Thanks,
Lisa

[Parisa]

Lisa,

Yes, it’s very possible that you still have Lyme. A one month course often time isn’t enough and many times the dosage prescribed is too low. Also, ticks spread other diseases (Babesia, Anaplasma, Bartonella, Erhlichia) that might not have been susceptible to the antibiotic you were given.

[Michele]

Hi Lisa,

Yes, it is possible you may still have Lyme or a co-infection. Have you compared your presenting symptoms with a lyme dx list? Did your doctor use the CDC guidelines to determine the Western Blot was negative? Do you know if there were any bands that were positive or indeterminate? There is controversy about how many positive bands actually determine a borrelia infection. Check out the ILADS website. http://www.ilads.org/lyme_disease/about_lyme.html

Michele

[nspiker]

Hi Lisa,

It sounds like you followed the standard antibiotic treatment for the bullseye rash and tick bite. That said, the fact that RA came about after your tick bite is suspicious 😕 . If lyme, or any of the co-infections are the cause of your underlying infection, Minocin alone may not be adequate. It would be in your best interest to be tested by IGenex, to be sure lyme isn’t in the mix. I don’t remember the exact cost, but I think it’s only $200 to run IGenex test #188 and #189, which is the basic WB panel.

I started on Minocin for ReA, and did not get any relief, so for me it was not enough. I never had a known tick bite, and honestly don’t think I was even bitten by a tick, although I’ve had many mosquito bites and our dog has had ticks removed, so I know they’re prevalent. If not for this board and others prodding me to get tested, I would never have thought I had lyme. I had been tested at least five times in the last few years, and it was always negative. My IGenex test was negative, and yet I was clinically diagnosed and treated for lyme. It wasn’t until I saw an LLMD, and they prescribed anti-malarial drugs for babesia, which is a protozoa, that I started to improve. Minocycline is used in lyme treatment, as well as most of the co-infections. The problem is that it is used at double the dose you are on currently, and most often in conjunction with other antibiotics.

We would be happy to supply the list of LLMD’s in your state – just let us know. It would probably give you a sense of relief to at least get the basic IGenex test, and to know how to move forward.

nancy

[Lisabuf]

Parisa, Michele, and Nancy – thanks so much for the information. It’s taken me a while to respond because after posting this question I decided to go ahead and request a list of LLMDs; the more I read the more I know I should at least be more thoroughly tested.
Michele, I have to assume that my current rheum used the CDC guidelines in interpreting the Western Blot test. They office just said it was “negative” but they told me no specifics. The ILADS website link you gave has frightening statistics and has really made me wonder about the possibility of co-infection. Unlike many other Lyme sufferers, I DID have the bullseye rash…so if a 30-day course of antibiotics is not sufficient, then I definitely still have the bacteria. Awful to think about because that was about 7 -8 years ago!
Nancy, Maz sent me info about LLMDs. Unfortunately, none are close enough for a one-day trip so now I have to decide what to do. I’ve already been round and round with my insurance about covering MInocin as a DMARD for RA so I’m pretty sure whatever this route costs I’m going to have to pay out of pocket. What I am hoping is that I can at least have a consultation with an LLMD who will test me and see if there’s evidence of the borrelia bacteria or of coinfections. If I could at least get a guideline of how to proceed and what meds are advised, maybe my Internal Medicine MD will work with me on renewing scrips…?? I don’t know — this feels like an uphill battle against a giant.
I may do another post to ask how other folks are handling the necessity of traveling to a doc.
Also, I really don’t know how to approach my Dr. about doing a different test (the Igenex) because she already explained that she was going to do the more reliable Western Blot test since the other had more false negatives. She took the Lyme possibility seriously and I believe she was sincere in believing the WB gave the answer we were seeking. That’s why I’d rather just go to a LLMD and hopefully have further testing there.
But on a positive note, I felt good Friday (it was jarring because I immediately recognized “this is what I used to feel like all the time”), felt bad again Saturday with fatigue, but felt good again Sunday and today!! THREE days in a week’s time feeling somewhat like I used to. It’s enough to give me hope! 😀

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