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Lyme/Lupus/Fibro - Confused

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Posted 7/23/2014 10:31 PM (GMT 0)
So im this black hole mess of trying to get my health back. I had a positive lyme test from IGNEX in March with one band positive, IGM band 31+ and no other bands. Things got better and then went afoul during lyme treatment so I sought some further help. One physician is adamant that I have fibro or a chronic pain symdrome and not lyme (really I don't think this, because my only fibro like symptom is a burning skin feeling). Another doc is going down the lupus path because I have high ANA titers, but this is a bit premature.

Is it possible for any of these to overlap and if they do like lyme/lupus, how do you treat if you are supposed to stay away from steroids.

I really don't know what the answer is yet, but I'm really getting confused and just want to make sure I pursue the right thing.
Posted 7/23/2014 11:49 PM (GMT 0)
My opinion is that it's best to do Lyme treatment first - the Lyme disease can be pushed into remission and the other conditions that you mentioned - Lupus and CFS, can only have their symptoms managed.

You can always go back to just symptom management, but I sure wouldn't want to stay with just symptom management with Lyme disease as the infection got more and more spread throughout my body -especially since Band 31 is specific to Bartonella, raising the possibility that you have another tick-borne infection like Lyme tagging alone and just suppressing your immune system so that you only test positive on that one band.
Posted 7/24/2014 1:22 AM (GMT 0)
Louise - I understand how you feel. I often wonder if I have something else besides the Lyme disease, because of my multitude of symptoms.
But, then I remind myself that I was well before this sudden barrage of symptoms. The symptoms all came on within a few months. And of all the maladies I'd researched, it was Lyme that really seemed to make the most sense - matched pretty much all of my symptoms.
I have decided that I will treat lyme, because I have nothing else available to treat my symptoms except - symptom management. Do I question it? Yes, all the time. I even herxed for 12 days and just today I am questioning it again.

What does your LLMD say? Does he/she say it is Lyme disease?

I feel for you - it is so difficult to know for sure what to do when you don't feel confident that it is Lyme alone. But, if it's Lyme plus fibromyalgia, or lupus, then I would still treat the Lyme first. Then you would know what symptoms are left over that you may need symptom management for.

Hopefully things will become more clear for you soon. Is there any improvement with your throat pain?
Posted 7/24/2014 2:04 AM (GMT 0)
I feel like the traditional doctors are just throwing darts at the dart board and don't really know. Ive gotten so many vague diagnoses that it is hard to take anyone seriously. But everything started at once so I just don't know and my head is spinning.

I think im going to change lyme docs and see if that helps. I do need to treat the lyme but my doc isn't the best.

No resolve to the throat/mouth, its horrifying. Working with a chiropractor now, who says im all messed up in the neck and stuff. Oh yeah, got hit from behind about a month before this all started back in Dec.

So that plus other stress, really dragged the monsters out of hiding.
Maybe he can do some work on my neck and maybe the throat thing will go away.
Posted 7/24/2014 4:01 AM (GMT 0)
It is very common for people who don't know they've been infected with Lyme to suddenly start having symptoms after a traumatic event (a car accident qualifies as such).

Fibromyalgia is essentially a waste-basket diagnosis, meaning the doctors don't have a clue. One LLND said in a presentation that 95% of patients she'd seen with a diagnosis of Fibromyalgia test positive for Lyme.

Furthermore, it is known that some cases of autoimmune disorders are actually caused by Lyme, and these cases often will go into permanent remission when the Lyme is treated adequately.

Yes, Lyme can cause a "false positive" ANA. Happened to me...got me a Lupus diagnosis, too...which I believe is actually Lyme...
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