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Sound like lymes?
Sep 6, 2012
Like everyone else where to start. 4-2012 was diagnosed with labrthynitis infection in ear damaged equilibrium.Cat Scan MRI showed nothing else. Enterered Vestibular rehab therapy shortly thereafter to retrain brain with balance and that's when the journey began. Started out with sore muscles mostly legs and arms and sore knees in the AM.Symptoms then progressed to involuntary muscle twitching and anxiety. Went to PP said was just anxiety "dont worry about it " just BFS. Symptoms after that constantly changing weird pains in head shortness of breath constant fatigue achey muscles back pain sleep disturbances but constantly changing from week to week..PP finally did full thyroid panel came back normal but was vit d deficient was given mega doses to take for 12 weeks was told once again no big deal. Went then to neurologist said test looked fine no MS Parkinsons or ALS or anything neurological ran EMG came back fine but ANA tested moderate positive for Lupus. Went ahead and tested me for Lymes with ELISA test which of course came back negative. Then was sent to Rheumatologist for further testing ANA came back negative this time but was told CPR protein was elevated indicating inflammation and that there was polyclonal gammapathy of undetermined significance. Said could be infection auto immune disorder connective tissue disease or possible cancer just hard to tell. They passed to infectious disease dr where i realized how dumb these guys are. Explained my story to him and the fact a lady i know less than 5 miles away tested positive for Lymes on her 7 year struggle to get diagnosed. Wanted nothing to do with my story suggested probably HIV or EBV or a bunch of other horrible diseases. Tested me for those all came back negative. BTW he mentioned that co-infections don't exist with Lymes disease which my friend has had about everyone there ever was. Strangely enough i just had to to go back today because fungal count was high thought maybe Histoplasmosis dind't know but wanted blood and urine but asked and was told once again nothing to do with lymes Infectious disease DR has now passed me to Hematolgist said my blood work doesn't match any other profile for his "specialty" Begged and pleaded with him once again to test thru IGENEX as that is where my friend finally got her confirmation. Said too many "false positives" from them absolutely refused but kindly offered the ELISA test again LOL Explained about additional symptoms headaches and pressure eyes burning, temp 97 deg but feel hot and flushed general mailaise and feeling like body shutting down feelings, lost 20 lbs since may but still have appetite amongst all the other previous symptoms and numerous trips to the ER that symptoms dont ever have a diagnosis other than looks like its something "viral" Was told didnt have Lymes go to Hematolgist next and endocrinologist. Throughout my rambling i did fail to mention i am a 33 year old hunter and outdoorsman that has been has been bit every year since i was about 12 years old. The fatigue malaise and anxiety has gotten so bad now cant hardly work but then sometimes i feel halfway normal such a weird contrast. Waiting for IGENEX package anyday now to try to get some answers. Does this sound like what i think it is or could it be something else. Regardless it is so scary through all the research I've done that something like Lyme's can be swept under the rug and be treated like it doesnt exist. Ending i was bitten earlier this year and if someone thinks this is lymes do you think i got it this year or did the extreme ear infection trigger it to come out. Just seems like symptoms have change and progressed so much in less than 5 months I am scared to death and have almost convinced myself i am crazy until i see how many others are out there that have been treated the same way. Hard to tell at this point obviously i am not a dr and maybe i do have cancer or something else but you would think after this many tests and specialist they would have found something by now. What other disease can hide like this with so many symptoms? Please let me know if you anyone has any feedback and i think i already know the answer but would be comforting to reassure myself from someone else





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