I was treated by a LLMD in MO last year for Lyme that had been found after 10 years of misdiagnosis. I began to feel better, then developed headaches and pins and needles in my arms, so I was referred for an MRI and sent to a Neurologist.
They found a TINY chiari malformation and sent me to a neurosurgeon. After second and third opinions, I was ready for brain surgery to correct the chiari, even though no one could actually say my symptoms were from the chiari because it was so small and my csf flow was still okay.
I was scheduled for brain surgery next week, but my blood work came back with a positive ANA and they postponed my brain surgery to send me to a rheumatologist for evaluation of the ana result. The neurologist suspects lupus and says that could be causing my symptoms instead of the more unlikely chiari.
And on top of the positive ana, last week I was started on abx for a sinus infection and WHAM all my old miserable Lyme symptoms are back! So now I'm wondering if the ana and the symptoms returning are the Lyme coming back in full strength after this unreal stressful year.
I'm thankful we caught it before brain surgery, but I'm confused because lupus reacts to abx like Lyme does sometimes. Lupus and Lyme have a lot of the same symptoms (chiari does, too!).
Now I'm wondering if I should retry Lyme treatment. I was only treated for about six months and I had a very hard time following the protocol because I kept herxing on just about every abx I tried. I stopped progressing, but then developed the new more neurological symptoms. But now my worst lyme symptoms are back and I'm feeling completely floored.
Anyone been through the lupus-lyme confusion? How will anyone know what I have? Does Lyme cause positive ana results?
Thanks in advance! Sarah
Posts: 91 | From East TN | Registered: Mar 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
my sister was DXd with a Chiari too. Went through hell listening to her PCP, a neuro and had appt. with neurosurgeon but I sent her to my LLMD and it is now gone.
Apparently because of Lyme inflamation her brain "leaked" into her spinal area. With lyme treatment her MRI's show no chiari.
My LLMD told her of other lyme patients who had surgery for the chiari and where unhapoy they did it.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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My llmd told me that he's seen other patients with chiari as well as lyme, but since my lyme sx were better, he didn't think I needed to continue treatment and I needed to focus on my headaches and the chiari. That was nearly a year ago now, and like I said, the sx are all back. I feel like I felt before I started lyme treatment. I think I just need to go give it another try. What a wild goose chase this whole thing is.
And how scary is it that I almost had brain surgery for what may be lyme?!
Posts: 91 | From East TN | Registered: Mar 2007
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