posted
I am currently being treated for late disseminated lyme disease. I had the disease for 7 years before being diagnosed. I am now at just 6 months on meds. I am taking bicillin (intramuscular) and biaxin (oral), among other things. My body seems to need about 12 hours of sleep a night. If I do not get this, it demands more to make up for it. Has anyone else had a similar experience? Even with that much sleep I am still only have limited energy during the day.
Posts: 5 | From rockville, md | Registered: Nov 2005
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posted
I emphathize with you. Fatigue is my number one symptom, followed by imbalance and seizures.
Everyone keeps saying it is my thyroid, but all tests show a normal thyroid level. I guess if the body demands sleep we should give the body what it needs. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10195 | From Illinois | Registered: Aug 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
hoooboy, me too. I was feeling pretty fine this summer, after babs tx, but this first week on bartonella has me totally wiped. And last year I could have won the international olympics in the Doing Absolutely Nothing division (including sleeping -- I can't do that, either).
Fatigue is often part of the LD/TBD package, but keep looking for possible causes. For me, babesia and bart were a big part of the fatigue factor; also, at various times, yeast/fungus, adrenal insufficiency, hypoglycemia, and sleep deprivation. And possibly toxin overload. Amino acid supplementation seems to help me, too -- I haven't done anything scientific, but I make a smoothie every morning with protein powder, and when I use one that has complete amino acids I do better.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Yeah, I think that fatigue can be worse than pain.
I've had lyme 5yrs, treated 7mos. My fatigue was pretty bad. I would get up at 8am, do necessary stuff, lay down til had to make lunch and so on. Would rally as required to take care of sick kids, drive to dr. etc.
The fatigue improved very slowly, then it would be a good deal better literally overnight. I have had this happen a few times. I occasionally could cry if I have to get up to get the TV changer, but now this is exception, thank God.
A nurse told me that she has seen several lyme patients on aggressive treatment just feel better all of a sudden.
So hopefully you will enjoy a burst of improvement soon!
Idea: can you find a way to get some rest during day so you aren't so wiped out?
Dr. Burrasco's guidelines mention rest periods essential.
posted
lymetoo, were you intending to point me to a particular link in that info? i have been trying to find info in other places to answer my question but haven't been able to. if you know of something online that already exists and answers my question then please let me know.
Posts: 5 | From rockville, md | Registered: Nov 2005
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quote:Originally posted by Lymetoo: Was there a question I missed?? Now I'm embarrassed!
haha. don't be. the question to which i am referring is my original one. is needing 12 hours of sleep (or more) during recovery normal?
Posts: 5 | From rockville, md | Registered: Nov 2005
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As for sleeping 12 hours -- hah, that is as nothing. The hubby used to sleep 18 hours on an active day. It does get better with tx, but you must be sure to hit the coinfections too.
(If I keep flailing on the TBDs, bear with me. I have one word about the coinfections: Be Sure To Treat Them. Even If You Don't Test Positive. If You Have The Sx, Treat Them. Trust Me On This.)
Oh wait, that's 15 words. 12 words. 20 words. Well, more than one word. So what's it to ya anyway, you in a hurry to take a nap or something?
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi 7997. I am right there with you. I'm a late stage neurolyme person, brain fulla lesions, body okay for the most part but shrieking head a lotta the time.
A blessing for me is that I've never been afflicted with the insomnia that a lot of Lyme people suffer from. When my head gets anywhere around a pillow, it's all over in about 60 seconds.
I drink coffee in the morning, which appears to keep me lively enough to keep going through about 1:00 or so.
However, I run completely out of steam around early afternoon. I will fall asleep at my desk. I have actually fallen asleep in court (I am a paralegal). I fell asleep waiting in a road construction line a couple weeks ago. I try to fight it, but it's so powerful I just cannot. It got so bad I was afraid to drive.
My LLMD gave me some samples of "Provigil." I hate to exxagerate, but it may be saving my life! I take 100 mg. in the afternoon, and it keeps me awake so that I'm not in danger of running off the road into a ditch or killing someone.
I work full time and am a single mom. There is no nap in my future, unless I can sneak one in on the weekend. :-) So for me, this has been a lifesaver. My insurance refuses to cover it unless I've been officially diagnosed with narcolepsy, so my doc cadges tons of samples from the drug salesman and hoards 'em for me (otherwise it's frightfully expensive).
I wish you luck. Trust me, this is a textbook Lyme thing. They say it gets better. I'm also six months into treatment and waiting for that part to get better too!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
lyme exhaustion is one of my worst symptoms and is so hard to explain that level of tiredness to others who don't know about it.
you are not abnormal, or at least not because of the fatigue.
it really s**ks!
feel better hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi and welcome, 7997 !!!!
I just want to echo what the others have said. Yes, yes, yes!!! It has been one of the most debilitating parts of this disease and the mental exaustion!!
So.....IMHO, if you can sleep...DO!! It will help with the recovery too!! Be thankful that you can sleep, some of us have terrible problems in that area.
So hang in there!! I think the fatigue has been one of the very last symptoms to ease up for me.
Healing smiles...lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Michelle, What's sad is that I am already taking provigil, and still I am struggling this much. The doc said that I could go up to 200mg, but that increases my costs, of course, and I don't know that it's working that well anyhow. (Although my first month of treatment I had many days that I was only awake for like 3 hours) Hopeful, You sure are right about people not understanding! That makes it really hard. They also don't understand why I am more tired now than I was before. (And neither do I, really)
Posts: 5 | From rockville, md | Registered: Nov 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by 7997: Michelle, What's sad is that I am already taking provigil, and still I am struggling this much. The doc said that I could go up to 200mg, but that increases my costs, of course, and I don't know that it's working that well anyhow. (Although my first month of treatment I had many days that I was only awake for like 3 hours) )
Well, I did learn that it might be had much more cheaply through a Canadian pharmacy should it come to that. It is really aggravating that my insurance (WORTHLESS Blue Cross) won't cover it. Let's hope we keep improving...sounds like you are, albeit slowly. You and I have been treating about the same length of time.
It's perplexing to me that my horrible exhaustion has only come on in the past few months of treatment and really wasn't that big an issue pre-treatment. But like everything else, I'm trying to take it as a good sign. (Ever optimistic here.) Hopefully a sign of brain healing.
Hang in there.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i needed 23 hrs sleep a day for a longgggggg time.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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