My husband developed narolepsy as a side effect of his Lyme disease. The standard medicine they're prescribing is not working.
Curious if anyone else has developed narolepsy and how they are dealing with it?
Posted by Tincup (Member # 5829) on :
Welcome to Lymenet!
So sorry to hear about your husbands situation. Hoping he (and you) get some relief soon!
I know of a few cases of Lyme & narcolepsy, but so sorry I don't know what they are taking for it. I do know one person has had a terrible time with it and still has not gotten relief using medications.
Hopefully someone else will come along with better news!
Posted by bluelyme (Member # 47170) on :
Lyme affects the adrenals and the hpa axis ...may want to explore that Avenue with functional doc. How long has he had it ? Is he in treatment?
Posted by LymeInFingerLakesNY (Member # 48340) on :
We are working on treatment. He's at a dr right now who also has Lyme but isn't doing anything additional like many on here mention.
He lost his pituitary gland a while ago so his adrenals are a big part of the problems as well.
He's had it for 20 years now and untreated/weak attempts for the last 3 years. Had a huge infection in his leg that put him in hospital for 22 days.
Blue Lyme...hpa axis? Can you explain? Sorry, new to all this.
Tincup, we got into a neurologist through the sleep center in Rochester on the 26th and praying for help.
Thank you,
Posted by bluelyme (Member # 47170) on :
Hypothalamus pituitary adrenal axis pathway. .hypothalamus sends ach to pituitary then achc to adrenal ten release cortisol to cycle back thr . .
if it is a low blood pressure thing desopresson or inhaled aldosterone may help .salt and licorice may be palitive but he msy need low dose cortef. Has a waking fasting cortisol test been done?
The nuero may not be much help... do ask his lyme doc to do table test or at least standing /sitting bp . 24 hr cortisol? You may need one heck of a fuctioal medicine doc Have you tried provigil? Its a stimulant for cfs narcolepsy etc
Posted by LymeInFingerLakesNY (Member # 48340) on :
Provigil doesn't touch him one bit.
We are going to try a Ritalin cream vs a pill to see if he absorbs it better.
We're not sure the neuro will be helpful but going to give it a shot. They aren't known for any Lyme support per say but it's something until we can get into a LLMD.