Quote:
Originally Posted by en bloc
Well, you certainly haven't lacked in a full work up. The only test I don't see that I think would be worthy is a gastric empty study. With your GI complaints and autonomic dysfunction, gastroparesis (delayed gastric emptying) seems possible and would explain all the GI symptoms.
How's your BP? With the lightheadedness and dizziness, it would be good to check your BP during these episodes. Drops upon standing is consistent with the POTS and would explain the tachy rates as the heart tries to compensate for drops in BP. Treatment options are many to control this and alleviate part of your problems.
Of course, what's causing all this is unknown but Lyme can certainly present with autonomic dysfunction and SFN. With your positive tests this should be considered as the culprit. Autoimmune disease is known to cause false positive lyme tests but your autoimmune work up looks to be thorough. The only thing I don't see testing for is Sjogren's, but you don't mention any dry mouth, eye, fatigue, or joint pain.
BTW, a month of Doxy isn't very long. I had a friend (a farmer who was in great shape) that was in bed for two years with Lyme. Not that this will be your outcome, but Lyme can be bad and cause all kinds of symptoms without rhyme or reason.
While I wait for your reply, I'll search a little to see what I can find on Lyme attacking the DRG. I'd bet it's possible, I have just haven't seen it spelled out in writing yet.
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So just got the arsenic fractionation back and its pretty much all "organic" most likely from the seafood I ate prior to the test and not contributing to any of my symptoms...
Funny you should mention gastric emptying test, I actually had a 3 hr. one done back in Apr. which came back perfect. New GI said even people with GP canhave good days so I had another (albeit shorter one, 90 min., laying down the whole time) done last week, just got results a few minutes ago and says its fine again..
I have been keeping a bp/hr supine/standing log for the past 3 months, 2x a day, to track this stuff for the neuro's. BP runs lower than before all this happened, my average is around 108-68, I dont have any blood pressure issues upon standing, just the tach, hr jumps from low 60's to high 90's, sometimes 110-120 range and hangs around that point. I've tried the high sodium/fluid diet an dexercise w/ no luck..
I do have some dry eye (but had lasik eye surgery 2 years ago, which can cause dry eye) and some dry mouth (but I have a deviated septum, which makes me sleep with my mouth open, which could cause this). The sjogrens work up I have had, is the anti ro/la ab's, I guess those are generally present in sjogrens. Rhuem said they'd do a lip biopsy if I want to completely rule it out, but I have heard horror stories of these and would rather have a lip ultrasound done first...just gotta find a rhuem that will order it.
I guess if you do not really think it sounds like my DRG is being affected then I wont continue to press for it, just wanted to get an opinion outside of the various neuro's I've seen. They are all suppose to be good docs, and I've now gotten the same opinion regarding the DRG from several at different hospitals.
I am going to stick to the biotics, just hard when I am not seeing any results and continue to feel horrible everyday, pretty scary, but I guess it could always be worse...
I am very afraid of missing something underlying that may be causing my symptoms, and now I am into reading the stuff about CFS, candida, and various latent chronic viruses (EBV, mycoplasma, and cytomeglovirus, all of which I have elevated IGG but negative IGM levels of)