Hello All,
I'm just wondering if any of you have contracted Lyme's disease and how you are doing and how the treatment went for you.
What I'm trying to figure out is how I tell the difference of fatigue from Lymes and the regular narcolepsy fatigue.
Thanks!
Ranger
Well lyme's disease would be closer to Cataplexy symptoms. then narcolepsy, You develop weakness in your bones, numbness, ect. sleeping fatigue is from narcolepsy more often. however my opinion is coming from someone who hasnt had lyme but i read up on it before saying something. but. Now they both could make you 2x more tired together thats easy to see. You wanna get up but your bones are numb and narcolepsy wants u to sleep anyways. so its easy to put both of them together. I wish you the best i'm sorry I couldn't be more help. the only thing i can say thats good is lyme is treatable. and curable a lot more then narcolepsy is. My advice which i do right now cus i cant afford my narcolepsy meds is i literally jump when i hear my alarm. do something that either A. scares you to wake u up. or B. makes it so ur no where near your bed. I have to literally work in my car sometimes to do things. I wish you the best i really do
I don't have Lymes but have two other things that I can get confused with narcolepsy symptoms. My first question to myself is, "Did I skip or change a med or treatment?" Also, I have to pay attention rather than ignore the symptom. That's hard because for years I had a habit of trying to ignore symptoms I thought I had no power to change. For example, if I feel a little disoriented it can mean I'm having migraine symptoms or skipped my C-PAP. Two weeks is about the time it takes for me to decide what I think. Today I went to migraine Dr. and asked about this. I went two weeks without usual treatment, and doc confirmed it was likely a migraine symptom. Best of luck with this significant challenge, Ranger.
Hello Doxatomic,
Thank you for the response!
My experience so far is that Lyme's disease is a new lower level of fatigue along with the muscular, joint, neurological cognitive/memory issues. I was pretty thankful for the time I was only dealing with Celiac and Narcolepsy diseases.
Adding Lyme's disease has turned a simple world upside down with all the different medication, diet and supplement regimens....
The mystery is hoping to figuring out one day "what cured of Lyme's" might look like because many of the symptoms are subjective and similar to other conditions...like narcolepsy.
Thanks again for your response!
Ranger
PS: I'm not on any narcolepsy meds...and I don't think I could handle any additional medications on top of current Lyme's.
Hello Carol,
Thank you for responding! Wow, C-PAP also? count me there, I use C-PAP. Looking back over the past few years there is a good possibility I had Lyme's when I was first diagnosed with narcolepsy. I agree sometimes it's hard to sort out all of the different symptoms and conditions. And trying to answer the "how are you questions"....
Take care and thanks,
Ranger
PS: "bite guard and wrist splints" to the nightly regime...staying healthy is such a blast and you meet so many nice people :-)
But I'm very thankful that things are not worse for me.
Carol said:
I don't have Lymes but have two other things that I can get confused with narcolepsy symptoms. My first question to myself is, "Did I skip or change a med or treatment?" Also, I have to pay attention rather than ignore the symptom. That's hard because for years I had a habit of trying to ignore symptoms I thought I had no power to change. For example, if I feel a little disoriented it can mean I'm having migraine symptoms or skipped my C-PAP. Two weeks is about the time it takes for me to decide what I think. Today I went to migraine Dr. and asked about this. I went two weeks without usual treatment, and doc confirmed it was likely a migraine symptom. Best of luck with this significant challenge, Ranger.
thank you so much for asking this question.
I was on Clarithromycin antibiotic for a full year with really good results, but I was having to take an expensive probiotic and had to beg for antifungal medications which I thought was crazy since its proven that antibiotics kills your good gut flora and proliferates yeast.
my doctor seemed to think the reason this antibiotic works on a certain group of people with narcolepsy/chronic fatigue/idiophathic hypersomnia was due to the GABA receptor being hyperactive and the use of Clarithromycin normalized the GABA system. I’m not saying this isn’t true but my question is what is causing these GABA receptors to be overactive and Lyme seems like a logical culprit. From what I understand there is really no good test that can rule in or out Lyme, Barts, etc… since Lyme can lie dormant and hide as well as mimic many diseases. I’ve also learned if the physician isn’t a lyme literate doctor you might as well be talking to a brick wall and you would have better luck going to see a Vet since they are trained in this area. You can Google and find the lyme literate physicians in your area.
the biggest comparisson i can do after research is comparing cataplexy with lyme disease. and cataplexy is a condition some narcoleptics have and some don't . . my brother had lyme and he told me he felt more like he didnt want to move not that he was as much tired. it could be differnt for some. I wish you the best and im sorry i couldnt be more help to you. About the medicaton for narcolepsy. Consider provigil or nuvigil. tbh these medications have very little side effects. They are known as some of the best medicines.. Just hope u have some insurance cus they are pricey. but i take a lot of meds and out of all my meds they have never ever gave me problems. and they have given very few ppl problems
Hello doxatomic,
Thank you for responding!
You just gave an excellent description and comparison [my brother had lyme and he told me he felt more like he didnt want to move not that he was as much tired.
Just what I was looking for. When I was first diagnosed with Lymes I was thinking "this is a new deeper level for fatigue -different than narcolepsy. Your brothers description hits the nail on the head. Physically you just don't want to move, even reading a book is beyond your energy level.
The Lymes has also added another level of insomnia and any sleep I get is not really restful. I know now there are worse conditions than narcolepsy, Lyme's is one of them.
4 months into treatment and I can only say it's not getting worse...
Thanks again and thank your brother!
Ranger
doxatomic said:
the biggest comparisson i can do after research is comparing cataplexy with lyme disease. and cataplexy is a condition some narcoleptics have and some don't . . my brother had lyme and he told me he felt more like he didnt want to move not that he was as much tired. it could be differnt for some. I wish you the best and im sorry i couldnt be more help to you. About the medicaton for narcolepsy. Consider provigil or nuvigil. tbh these medications have very little side effects. They are known as some of the best medicines.. Just hope u have some insurance cus they are pricey. but i take a lot of meds and out of all my meds they have never ever gave me problems. and they have given very few ppl problems
Hope this find you doing better than when you posted. As for the not feeling rested… I haven’t felt rested even after 6, 8 ,12 or even 24+ hours of sleep (yes I’ve slept over 24 hours at one time on more then one occasion).No matter how long I sleep I don’t feel rested. 
but I will say that a power nap no longer than 20 mins makes me feel more alert than a full night. Maybe add in a nap or two if you can.