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Sjogrens Topics => Living With Sjogren's => Topic started by: mbr22m on December 26, 2016, 11:25:09 AM

Title: Lyme Disease?
Post by: mbr22m on December 26, 2016, 11:25:09 AM
Hi all,
I'm just wondering if there's anyone out there who has been diagnosed with both Lyme and sjogrens? I was recently diagnosed with Lyme through an iSpot test and now I'm wondering if it had been causing all my autoimmune problems and how Lyme is treated if diagnosed so late.  I grew up on Long Island and was in the woods constantly as a child.  I've had health issues since I was 9. Do antibiotics help when you're diagnosed this late? I was diagnosed by a functional med doctor and he said antibiotics can make me worse. I'm thinking I need to find a Lyme literate doctor.... Any feedback from anyone would be helpful.  Thanks :)
Title: Re: Lyme Disease?
Post by: Pete0211 on December 26, 2016, 02:21:13 PM
My brothers and father have dealt with Lyme. From what I recall, it takes months on antibiotics, and the symptoms get worse at the start of treatment for a few weeks (IIRC, as it starts dying, it dumps toxins into your system and takes a while until you get to the point where there's not enough left to cause a problem).

Title: Re: Lyme Disease?
Post by: mbr22m on December 26, 2016, 03:52:56 PM
Thanks,  Pete0211. From the little I've read about so far,  antibiotics seem to be the standard protocol.  Not sure why my doc does not recommend them...
Thanks again
Title: Re: Lyme Disease?
Post by: bartolo on December 27, 2016, 05:02:34 AM
I strongly encourage you to arrange an appointment with an infectologist, who will probably want to make another test to confirm/exclude Lyme disease. Mind you that the tests may be false positive, but an infectologist should know how to interpret them.

Antibiotics are used in all 3 stages of Lyme disease.

http://emedicine.medscape.com/article/330178-treatment

Title: Re: Lyme Disease?
Post by: Jenny on December 27, 2016, 05:08:45 AM
Yes, i was diagnosed with Lyme at the same time as Sjogrens. At thetime we lived next to a deer sanctuary in Virginia. My doctor put me on an antibiotic for a few weeks and it cleared it up.
Title: Re: Lyme Disease?
Post by: mbr22m on December 28, 2016, 09:35:13 AM
Thank you all! I made an appointment with a Lyme specialist today and hopefully get on antibiotics.
Title: Re: Lyme Disease?
Post by: gurs on December 28, 2016, 01:19:56 PM
Ive had Sjogrens since I was a child. We know for certain I have this via symptoms, labs, etc.
About 10 years ago my body just flipped out overnight. I went to various doctors and hospitals and everyone said it was the autoimmune. But, I went to my Alternative doc who sent my Lyme testing to Igenex, and it came back positive. He wanted me on antibiotics, but I had also severe, severe, candida-yeast and couldn't do it. My other docs kept telling me it was the autoimmune, and also the fact my hormones were out of whack from a total hysterectomy months prior. So, I let it go. 10 years later, Im still sick as a dog. Wondering if I do indeed have lymes? I guess autoimmune patients can also produce a false positive on lyme testing?
I did recall getting bit by something prior to me getting super ill, so who knows?
They said if you want to try antibiotics and see how you feel for a month or two, that maybe can give you an idea if its helping or not.
Maybe helpful...good luck

Gursie
Title: Re: Lyme Disease?
Post by: mbr22m on December 28, 2016, 02:18:38 PM
Gursie, that sounds similar to me.  I was doing ok with my autoimmune symptoms until I got hit with food poisoning (e coli infection) and was put on antibiotics for 2 weeks.  Everything got significantly worse after that infection.  Now I have underactive thyroid and my hormones are completely out of whack.  I get hot flashes and I'm 39 years old..  :-\
Title: Re: Lyme Disease?
Post by: Maria3667 on January 02, 2017, 11:57:40 AM
Yes me too. I was diagnosed with Lyme's a couple of years before being diagnosed with Sjogren's. As a matter of fact, trouble hit after being treated for Lyme's. My GP said I shouldn't worry, because they got to it 1 week after infection and a short course of antibiotics (7 days) should cover it... Nonetheless I soon developed severe fatigue, dry eyes & mouth.

I still wonder if I have reminiscent Lyme's - but as tests are unreliable and the infection occured almost 20 years ago, how to find out the truth now?