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Posted 6/15/2016 7:53 PM (GMT 0)
I know for sure I have lyme and I know of a few coninfections..but a couple of years ago when my body went haywire and I got to where I couldn't go to bathroom and then it would be like diahrreaha altered sensations all over my body feeling like crawly things. eyesite keeps changing....floaters..etc..then this affected my nervous system...all after an abscess root canal I didn't know how long it had been infected. But 2 years prior to this I had started having gastro problems.... that would come and go... cold sores and hPV popped out I knew I had cold sores but not hpv....just some weird things happened I didn't know the body could do my mouth got of fire..but it was like something attacked me all at once over a period of a few days..got to where I couldn't eat hardly any food and all food was going through me like crazy....for months I ate chicken and cucumber because that was about all I could eat without setting my mouth off...my body was hot all over and I could sit in scalding hot water and it not phase me...also my eyes changed colors from brown to green---and I had what felt like popping sensations in my head and sometimes light flashes in front of my eyes and then one day while driving I had like silive starburst like coming at my left eye..instantly got nauseated and almost wrecked..that only happened the one time. .this is so weird and one reason why my experience seems so different..now I have dermagraphics , reynauds, levida reticularis...my ana is 320 speckled pattern...but everything else is normal and lupus and sclerderma is negative.....


Could it be possible that the infection in my mouth was just the lyme and my immune system got down to where lyme went crazy..Im just really scared now that I think about Lupus...cuz you can't get better from that

I probably won't get better if I have all of the autoimmune and lyme and probably SLE will I/

Post Edited (carla) : 6/15/2016 1:56:22 PM (GMT-6)

Posted 6/15/2016 8:20 PM (GMT 0)
Carla - first off, I am very sorry to learn about all your pain and discomfort and yes, I agree, it is scary as crap - especially when the vision/ head is involved. I would just be cautious about the "labels" health care providers want to put upon you. I was told I have lupus and not Lyme last Fall during a quantum biofeedback test. She was also trying to convince me that all the symptoms she was reading off her book applied to me - some did, but a lot didn't. I questioned her knowledge of Lyme and sure enough she did not know about all the Lyme Co'.s NOR did her device have any of the coinfections programmed in it to be able to detect any in a person ( I later contacted the company to find out.). Apparently, to this practitioner, my Igenex lab tests meant nothing.
Bottom line, just please beware of labels. Lyme is THE great imitator of many, many diseases.
Posted 6/15/2016 8:23 PM (GMT 0)
Thank you..I just know everything weird with me...Lyme scares the crap out of me but at least I can treat that and possibly get relief..


I didn't have any of this to all that weird stuff a few years ago..but when I tested for lyme and it was positive....I remember getting bit by something about 15 years ago...I am just feeling hopeless ..every time I feel I got things under control and can deal with it something else pops up

I also have hot tingling all over my body....and sometimes it feels like bengay...and a lot of people on the lupus board have that..... also have where it feels like an elephant sitting on my stomach and feel like air hunger sometimes...sleap apnea..but I can't wear my mask because some foods makes my mouth feel raw and sometimes make my lips tingle or feel numb......that just a few symptoms

if I would have just realized about the lyme before this other stuff popped up I may have prevented this.

Post Edited (carla) : 6/15/2016 2:29:28 PM (GMT-6)

Posted 6/15/2016 8:26 PM (GMT 0)
I hear you, Carla, it is unfortunate - 16 yrs. for me. And, everyday it feels like something new/different to handle-to say it is exhausting is putting it mildly. I am glad you are here (((((Carla)))))). Keep being the strong person that you are - takes courage.
Posted 6/15/2016 8:30 PM (GMT 0)
maybe I take care of lyme...all of this other stuff will be taken care of
Posted 6/15/2016 8:32 PM (GMT 0)
That how it works for many of us. I've had doctors try to convince me I had MS and many other things, some autoimmune and other things. None of it was, it was all due to Lyme and it's co-infections, as all the symptoms went away once I had effective treatment.
Posted 6/15/2016 8:36 PM (GMT 0)
So not sure what to do wondering if I should go back to the rheumatologist...
Posted 6/15/2016 9:00 PM (GMT 0)
If they aren't Lyme literate, what's the point? They won't modify your treatments for a Lyme patient, so you would be on immunosuppressive treatments, which will prevent you from healing any infections you have.
Posted 6/16/2016 2:18 PM (GMT 0)
Carla, Trav. is right - your best bet is to find someone who is Lyme literate.
Posted 6/16/2016 2:24 PM (GMT 0)
well that doesn't seem to be happening....so I have to do this on my own
Posted 6/16/2016 2:28 PM (GMT 0)
Carla,

I am sorry that you had to go through this scare. Lyme imitates so many diseases. And because Drs. aren't trained in Lyme and in fact believe it is just a simple thing fixed by a few weeks of abx they look at what they think is the most obvious reason for your pain. It saddens me that they won't do the research on their patients to find out what is really going on.
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