Lymeymom, I am so very sorry you are experiencing such serious problems! This is really dangerous for you!
Of course, we cannot know for sure what is the cause of your illness, but we do know that Lyme CAN cause hypoglycemia and we know that a single blood sugar test here and there is NOT likely to show as low unless they happen to catch you while it's low!
When I did the 5 hr test, my first few hours were normal -- they started slightly high, then gradually got lower, but within normal range. It was around the 4 th hour that the lab techs came looking for me (I was wandering around the hospital). They said they expected me to be passed out, my blood sugar was so low. They asked how I felt and I said just like I normally do when my blood sugar drops. I was weak, shakey and had a blinding headache.
Some people would have blacked out before this hour, at this hour, or even the next hour. It all depends on your pancreas, liver and adrenals.
There is one very safe way you can 'test' yourself: Consume NO sugar, eat high protein and/or complex carbs every 2 hours. Keep your meals SMALL and be sure to eat every couple of hours.
IF you are hypoglycemic, you may crave sugar, but if you will lay off it for 3 days, this craving will pass and you will be fine w/o it. IF you are hypoglycemic, you will begin to feel better in about
a week. You will be able to tell when it is dropping -- you will get weak and shakey, often very irritable and you will need some protein or complex carbs.
I hate to sound like a zealot, just because I experienced this (still do -- I still have to eat every couple of hours, but not as strict about
what I eat), but w/ Lyme, it's a very real possibility. I have never passed out, but MANY people w/ hypoglycemia do!
Do not overeat at any meal or snack.
Lyme and some of the co-infections can cause your anxiety -- so can hypoglycemia. Taking on a hypoglycemic's diet can help you determine if this is part of your problem.
btw, Orange juice does have sugar in it. But if you get in a fix -- when you FEEL the bottom dropping out, drink down a glass of OJ. It pulled me out of many fixes when I was waiting tables. The Bar knew I had a problem when I stopped by and said 'Give me some OJ NOW!'
Also, my mother has a friend who has to keep a glass of OJ by her bed. She cannot get out of bed without it.
Contrary to popular belief, do NOT eat a candy bar when you feel your sugar level is low. (unless you are diabetic, which is a whole different thing). IF you are hypoglycemic, you have too much insulin, whereas the diabetic doesn't have enough. If a hypoglycemic eats sugar, it gets burned up too fast because of too much insulin. Eating protein and complex carbs takes longer to break down into sugar.
Everyone is different. That is why the 5 hr test is so important. Everyone's 'graph' is different. Still, without the test, you can test this yourself and possibly get rid of the black outs.
If hypoglycemia is not causing this, then I'm really sorry -- you are going to need a Dr who cares enough to help you.
I think we all already know that a negative lyme test does not mean you do not have LYme. Some of the sickest Lymies have negative tests.
Meantime, make sure you do not leave the house w/o snacks -- peanut butter, cheese, etc (on rye is good) and do not overeat at any snack or meal.
Gosh, I hope we can help you last til the neuro!! Please keep us posted!
PS: doesn't low blood pressure caust black outs? anybody?