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Any UC'ers with lyme?

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Posted 5/29/2014 11:00 PM (GMT 0)
Im pretty sure i have Lyme. Im going to a LLMD tomorrow who is aware of my UC and remicade usage. She will be in close contact with my GI doc and make a plan for me with my GI to treat my lyme while not screwing up my UC, however i was wondering if there is anyone on here who has been in a similar situation?
Posted 5/29/2014 11:16 PM (GMT 0)
Hi. I had surgery for my UC four years ago but prior to that I had a Lyme's dx while I had UC. The doctor I was seeing for the Lyme put me on a course of Doxycycline that lasted quite a while. Interestingly enough, my UC symptoms were much, much better while I was on the Doxy. So I have no doubt that the doxy was helping my UC. Unfortunately once I was clear of the Lyme's and stopped the antibiotic, my UC symptoms came rushing back. Good luck with your course of treatment. That Lyme's disease is a *****. Not fun to have on top of UC.
Posted 5/29/2014 11:37 PM (GMT 0)
That is very interesting as Ive been told Doxy wreaks havoc on the GI tract. Ever wonder if you had lyme induced uc?
Posted 5/30/2014 12:00 AM (GMT 0)
Actually I did wonder that briefly. But my UC dx came way before the Lymes disease. UC also runs in my family so I ruled out the Lyme induced theory.
Posted 5/30/2014 12:21 PM (GMT 0)
I'm currently being treated for Lyme disease.

I was diagnosed last July and immediately treated with 3 weeks of Doxy. I felt much better but eventually had a pain return to my mid-back that would show up in the middle of the night. This was also the first symptom that the initial Lyme disease presented. Anyway after having lots of physical therapy, an MRI, a cat scan, and a gall bladder test I finally tracked down a LLMD to evaluate me.

Although she hadn't heard of anyone with such limited symptoms, she was willing to treat me. The pain in my mid-back spiked the first day I started the Doxycycline Hyclate and Nystatin and within a few days it was hardly even noticeable. I have been on them for about two months now and I no longer notice any mid-back pain.

Since I have UC she wanted to be extra careful with my treatment which amounts to about $500 a month in supplements. Here is the list of supplements:

PRObiotic225
InflammaCore
Mucosagen
Saccharomyces Boulardii
ALA-max CR
Grapefruit Seed Extract
Biocidin
Olivirex
Transfer Factor Multi-Immune

It sounds like she wants me to remain on the protocol for another two months.

The treatment has had no effect on my UC. The Doxy side effect of increased sun sensitivity has been a real pain. I burnt my hands and nose pretty badly a few weeks ago while mowing the grass.
Posted 5/31/2014 8:51 PM (GMT 0)
Im so happy i found you on here. Ever since feb when i came down with a fever i have had eye floaters, bouts of severe fatigue, dizziness, tremors, random tingle feelings, anxiety, panic attacks, sensitive to sound and light, headaches, minor pain in joints, skin pain and hypoglycemia My reg doc gave me doxy about 2 weeks ago but when i told my GI i was taking it she told me to stop it as it could cause a flare. Im on remicade BTW.. so i did and started on amox. I wish i had continued with the doxy as i hear it works better for Lyme. Im almost 2 weeks into the amox treatment. I still have all sorts of symptoms and i have this horrible burning pain that just started on my ass-cheek into my thigh. I saw an LLMD yesterday and she went over all my symtpoms and my bloodwork. she feels I have lyme with co infections. She wants me to finish out the amox and then we will start a new regimen from there. I'm just concerned my GI from NYC will totally disagree with any kind of treatment from an LLMD and and the fact that my lyme test shows only Positive with high lyme titers and a IgGp41 band only. as per the CDC thats a negative but negative means nothing on lyme tests... ahh the crazy crap we get into. I guess it gives me hope that with the proper probiotics treatment can be safe. The whole c diff thing is crazy. oh and yes a had a brain MRI,C spine MRI all clear,ENT gave the all clear and Ophthalmologist did as well.

Post Edited (LMFD296) : 5/31/2014 2:55:56 PM (GMT-6)

Posted 6/2/2014 3:29 PM (GMT 0)
Yeah, band 41 can be anything. An abx regimens very well may cure you.. But that doesn't mean you have Lyme. I have a hard time with this whole treating Lyme based on symptoms theology many seem to have. 41 and your symptoms can be 7 things I can think of off the top of my head and I'm not a doctor.

I also treated for Lyme but I guess I'm just super lucky that 4 bands lit up on a labcorp test, 3 of which are Lyme specific (and 41- but I have lab verified co infections).

But I digress.

Take your probiotics and you should be fine.. Don't listen to the gi, take the doxy and as you feel better come off the remicade so you don't end up with some other pathogen.
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