Briefly, I've just finally been Dx'ed with Lyme after having it for 16 years!.... on 400 mgs oral doxy/day for starters, and herxing ....
My neuro sx get markedly worse during the late afternoon, and nearly unbearable in the evenings... anyone know why this is? I could probably look it up in the literature, but thought maybe an expert could tell me offhand... thanks.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Hello, I don't really know why this would happen, but here are a few educated guesses. One possiblity would be the hormone levels that regulate our daily cycles affect our symptoms.
Also, some of my neuro symptoms, especially my myoclonus, worsen the more relaxed I get.
I'd be interested in hearing what others say.
Take care, Ms. Myo
-------------------- Posts: 122 | From Texas | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey minimonkey
good question. I would like to know why too.
After 8 I am like a drunk- speak backwards,more uncordinated,confused ect.. Only my husband know how to understand my lyme speach.
I think I just get so tired by the end of the day ,at night my brain signals are misfiring.
Someone should do a study.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I can't say for certainty but can only offered a slightly educated guess.
Some neurological disorders such as restless leg manifest at night, due to the 24 hour cycle of the neurotransmitters( the brain chemicals).
It also could be your tiredness, hormone levels, etc.
it may also be a function of the lyme and your co's.
I have been tx for babesia: and lo, and behold, at 5pm on the dot, every night, I have chills so bad that you would think I was outside in Anartica in a bathing suit. I usually have to get 2 or 3 throws and hot tea. If really bad, I take my night bath at this time.
What kind of symtoms are you having?
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
I think it's because we're just plain exhausted at the end of the day. Symptoms of any illness are worse when we are tired.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
My sons LLMD told me that keets are more active in late afternoon....This is why I see herxes with my son at this time....
Interestingly, I believe Igenex says to take blood later in day as the lyme is more active at this time....
It may hold true with what you are experiencing....
My son has had very few herxes earlier in the day.....Usually between 3pm and 5pm and lately around 10pm......
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey ebrrschoux
Thank you for sharing this information. I had no idea the ketes where more active late in the day.
This explains alot.My biggest hex's are after 4pm.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
That all makes sense --- my neuro sx are mostly of the shock- sensation/numbness/burning/dizziness/tingling variety .. pretty tolerable compared to some. Now I remember the bit about drawing blood in the afternoon -- if the li'l buggers wake up then, that would account for them wreaking more havoc at night.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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HI, I remeber my doctor telling me symptoms exacerbate in the eveneing...but in addition I think it is the stress and exhaustion of the day that make things worse...I always used to feel a ton worse in the afternoon....it has gotton much better with treatment...geed luck...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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posted
I can't answer why, but all my herxes are around 6pm to 8pm. They last only about 2 hours in most cases and are occurring with decreased intensity, usually only a swelling around the otherwise invisible tick bites once a month. I diagnosed my Lyme after having it only about 2 months and have been on abx for 8 months. I can't imagine what it must be like for some of you with longstanding, untreated Lyme.
Before diagnosing it, all my symptoms, except for a few small red spots that looked like mosquito bites occurred in the evening, with the earliest being at about 4pm one day. I have had terrific rashes, headaches, vertigo, heart arrhythmias--all in the evening. I can't say that it had anything to do with my body being tired. I never work very hard or very long on any day.
I don't know if any of the above helps, except to confirm the mystery of the late evening symptoms.
Posts: 75 | Registered: Aug 2005
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JimBoB
Unregistered
posted
I definitely think it is because we get tired during the day.
My vision would start out pretty good in the morning when I have been on doxycyliine the past 24 days; but by night I could hardly see. same with the stomach pain.
Well, yesterday, it all got super bad, plus I was really woozy and whole head burning up, it got scarey.
So I decided to quit taking the doxy and now tonight I am actually MUCH beter than I was this morning. I will see what happens tomorrow. But at THIS rate of feeling better, it will feel like I am cured by tomorrow.
I am NOT going to go on my Amoxycillin protocl next week like I had planned. Going to try nothing but herbs and vitamins the rest of the way on this thing.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Minimonkey, I remember 4 years ago when I was at my worst and bedtime was too weird.
No sooner than my heading hitting the pillow, I would feel my body light up like a Christmas Tree. It was like electricity flowing through my body.
With my eyes closed I would see flashes of light, nerve ending pain, tingling and twitches galore. Sometimes this would only happen on one side of the body, sometimes both.
Never understood why, but thank goodness it's gone except every once in a while.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
My worst symptoms are, and always have been, at night, also. I don't know why this happens.
My heart invariably will go into an abnormal rhythm when I lie down in bed and turn on my left side.
Map1131: When I first became VERY sick, I too, felt like my body was "lit up with (flashing) Christmas tree lights."
You're the first person I've encountered who has described this same experience. When I've told doctors about this incredible phenonmenon, I've never gotten any feedback from them that other patients have reported similar events. (I had other incredible "electrical" manifestations, too).
Interesting.
At my worst, during that phase of my illness, I truly thought I was going to die.
Posts: 45 | From Northeast | Registered: May 2001
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posted
It's because you are tired and worn out. I dont mean physically, you have reduced brain capacity, and you have been thinking to some degree all day.
I would imagine that if you had a tougher mental day, where you realy had to concentrate- ie, driving thru a snowstorm in a wimpy car, bad phone conversation with your ex, realy trying to concentrate on an analytical problem- that you would get these neuro symptoms earlier because you would use up your capacity alot quicker. At least thats how it works for me. Also, if I do alot physically, I will be brain fuzzy later. If I do basically nothing, you know watch the bees polinate the plum trees, go inside and munch a few nuts and sugar free chocolate, etc... I seem to avoid these symptoms. If only life where so easy on more days.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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JimBoB
Unregistered
posted
Tick Sick:
You are NOT supposed to sleep on your LEFT side, as this puts pressure on your heart. And NEVER sleep on your belly either. Sleeping on your back is not as good as sleeping on your right side either.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear Tick Sick, The odds are overwhelming that you have a Mitral Valve Prolapse. 75% of us develop one, and palpitations when laying on the left side are almost always caused by having one.
Please call your doctor, explain the sx, and arrange to have an Echocardiogram done. This is a simple, 15 minute, non-invasive procedure to see if you have an MVP.
It is important to know. If you have one, your blood volume will be lower than normal and you are deficient in Magnesium.
You will need to drink a quart of water per fifty pounds body weight daily, and take Magnesium citrate to bowel tolerance.....take it until you get diarrhea, then back off one dose.
You will also need antibiotics for any procedure that may involve blood, even dental cleanings. Taking enough Mg, early enough, may prevent you from ending up with three prolapsed, leaking valves like I have.
Klutzo
P.S. I am the exact opposite of most of you. My herxing is so bad in the mornings I can barely walk, let alone drive. By 3-4 PM, I perk up and become human again. This is most likely due to weak adrenals, and the fact that I have the circadian rhythm of an owl!
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bb is after our choline (known).
Choline is needed to make acetylcholine.
Acetylcholine is needed during REM (rapid eye movement) sleep.
Melatonin (which comes from serotonin + 2 enzymes) is needed for NREM (non rapid eyemovement) sleep.
We need melatonin to fall asleep. Then acetylcholine to have REM sleep which is when we make PROTEINS. To make all proteins...we need Mg which enters the cells at night...the "cleansing" of the acidic cells.
We are supposed to awaken "refreshed"...more alkaline.
There is a LOT of "healing" that takes place during the night.
Endorphins are make at exactly 2am...for everyone. Amazing, but true.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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posted
Thanks, everyone, for your insights. (Sorry I didn't get back to this thread sooner).
Posts: 45 | From Northeast | Registered: May 2001
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posted
i have lyme arthritis (no neuro symptoms) but the pain gets worse in the early evening and at night it can hurt incredibly without strong painkillers I wake up every 20 min to turn. its just typical for lyme...
Posts: 21 | From Detroit | Registered: Mar 2006
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posted
Its nice to know I am not alone. I to have alot of neuro symptoms. Twitching so much at night when I lay down that it rocks my whole body. Kinda of like it grabs the base of my spine and makes me arch my back. I also feel the electricity feeling which causes insomnia and I feel like I live on Ambien. It has helped me sleep during the rough times but I try not to take it all the time and even when I do take I usually just take half the pill. Since I have gotten Lyme I feel like I am the biggest pill popper in history
My symptoms are right sided muscle pain, chest pain, hoarseness, shortness of breath,twitching, Blurry vision comes and goes during the day, constipation, foggy brain (although it seems better on the Biaxin now) headaches and as if that was enough chills and coldness in my extremities Posts: 204 | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Nukegirl
I just have to ask this. Have you been treted for babs? Your symptoms are almost classic babs
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
For those with symptoms worse in the early morning hours it could be a reflection of low adrenal function, specifically, low cortisol -- the critical steroid involved in the immune system and anti-inflammatory.
You can probably find saliva adrenal tests online to confirm this. Some informed docs will give identical to natural cortisol to support the adrenals in physiological doses.
Posts: 211 | From NC | Registered: Dec 2005
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WildCondor
Unregistered
posted
When i was at my worst, It would take me 2 hours to wake up and get going in the day, eat and get dressed, so exhausted. Then i would crash in the afternoon like clockwork and have to take a 3-5 hour nap until 9 at night, then be wired abnd spaced out til 3 or 4 am and then sleep til 2 pm, it was awful. Lyme patients have backwards cycles, and i am certainly one of them. I still feel better at midnight or 4 am than I do at 8 am, forget that! So i work all night! Ahhhh!
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