posted
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?
Posts: 14 | From Finger Lakes, NY | Registered: Jul 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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
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,
Posts: 14 | From Finger Lakes, NY | Registered: Jul 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
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
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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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.
Posts: 14 | From Finger Lakes, NY | Registered: Jul 2016
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