When I had what I know think was a lyme crisis about 10 years ago I had congestive heart failure and a sudden onset of diabetes insipidus. We couldn't figure out what caused it and I have not made any detectable vasopressin since that time (it's secreted by the pituitary gland).

The medications like DDAVP don't seem to work well for me and if I drink water I have to add salt (yuck) to keep from getting dizzy and vomiting. Now I'm wondering if there's any connection to this type of pituitary damage and lyme disease.

Thanks for any input -

This is an issue that interests me a lot.
How were you diagnosed?

Do you or others by any chance have hearing/ ear problems that have been attributed to fluid imbalance in your ears?

My serum vasopressin levels on tests were 0, even after water deprivation, so they knew something was wrong. During the more acute phase of this I had to use a lot more salt. I found that I could tolerate skim milk okay because there was enough natural sodium and other minerals not to trigger the response, so that's how I get most of my fluids.

Dr. David Bell is a chronic fatigue specialist in New York. He found that many of his patients were also deficient in vasopressin, and, like me, taking the medication didn't seem to help. Here's an article he wrote: http://www.pediatricnetwork.org/medical/CFS/bell-commentary/evalbloodvolstudies.htm

Another thing that will set off the syndrome for me is animal fats and high potassium foods. They both increase aldosterone, and in turn, that is supposed to raise vasopressin. But for me it just makes the deficiency more pronounced. Vomiting apparently triggers the release of vasopressin so that's probably why you feel sick when it's low. (And that's why people vomit when they're going into shock.)

Depending on the cause of the vasopressin deficiency, you'll be treated by either an endocrinologist or nephrologist. Since lyme causes so many endocrine problems I would suspect that others have had pituitary damage that could lead to the same symptoms.

I was evaluated for ear problems, including meniere's, "ear rocks" and all the other stuff. When I drink water I immediately feel like my inner ear fills up with fluid. Apparently it has to do with the lack of sodium in the cells and I have found that drinking salted water (it's easier with a little lemon juice squeezed in) keeps that from happening.

Jan

I dont know much about it, but I was also dx'd with diabetes insipidus. I have no detectable serum levels of ADH and frequent urination and excessive thirst.

I also have low serum levels of sodium. I drink lots of electrolytes and put sea salt in my water which helps. In fact I must really need it because the salt tastes really good to me.