Welcome to the Lyme page -- sorry you have reason to be here, but there's good company hereabouts.
I don't recall that gorbybelle has posted here for quite a while, and this thread has been quiet for 4 years. It's possible gorby will pop up.
Feel free to start a new thread, or just wait to see if someone responds. Let us know if we can help.
Yes! It usually starts with pain somewhere in my abdomen. Then I get this rush of "heat" that rises through me, over my shoulders, and over my head. If I am mid sentence, I just stop talking because my brain goes into some sort of strange hibernation type state. If I am laying or sitting down, I just fall asleep, and if I am standing, I have to find some place to sit right away. I usually struggle with a depression type feeling for a few hours after those "spells".
In scanning the comments above, I don't see that I inlcuded something about which magnesium I take.
I've read and been told that anything ending in "-ate" is most easily absorbable, like magnesium orotate, citrate, aspartate, or malate. I have one type I took that I particularly like called magnesium C.A.O., which has malate, aspartate and orotate.
My sister and I call this "internal vibration".
"Hey, what's going on?
I actually (knock-wood) haven't had this, at least no pronounced, in quite some time. It was among the first of the onslaught of neuro symptoms but eventually fell to the background.
I would lie in bed and have it every night at first. Or I was more conscious of it because I was lying still. I was vibrating at a lower level throughout the day. It was like like being plugged into a socket sometimes. I was lit up like a Christmas tree, sparks flying early on.
it could be really set off like gangbusters by, say, some jerk in a coffee shop raising his voice/yelling at the clerk behind the counter (in that instance, my tongue began jumping around in my mouth like fish being pulled in on a reel. Needlesstosay, the guy wasn't hassling the clerk for long. lol) or any loud noise.
I suspect with many neurological diseases, patients nervous systems just sort of "hum" in a way that healthy one's don't.
I am feeling better now - [it is 10 p.m. here or 22.OO hrs.] - thanks.
I will check out with chemist/pharmacist -[we use either] - I never think to do that!
I am seeing, or atleast speaking to LLMD. in three months - though he has always said that I can call/ring him anytime, which is nice to know. I am lucky that - at a push - I could drive to his surgery in about 40 mins. - I say 'lucky' since there are not many LLMD's. in U.K.
My knees and hips are feeling very 'odd' of late - I struggle a little with walking when I first start moving, it gets better once I have been walking for a few minutes - don't know what to think about it - could be lyme - as we know !! I am thinking maybe the magnesium may help with that too.
Sorry you're having a bad day! I am always (ALWAYS) worse in the mornings, and generally better as the day goes on. Hope you're feeling better soon too.
I don't think magnesium conflicts with antibiotics ... and it's not the same element as zinc or iron. To be on the safe side, you should call your pharmacist ('chemist' in England, yes?) and ask if taking magnesium supplement conflicts with doxy.
Milk of magnesia has magnesium in it, and other indigestion meds may well also, you're right. Should be written on the label fairly clearly.
When do you see your LLMD again?
Thankyou for that interesting info.
Is there 'better' types of Magnesium to take - also when would I need to take it in respect of my abx. - would it be 'hours' apart, before or after?
It says on my doxy. info. leaflet - do not take zinc,iron or indigestion remedies at the same time of day as this medicine.
I think indigestion remedies may contain magnesium?
I had a 'crappy' morning today - I got out of bed without too much problem - it started about 20 mins. after a shower - nausea/pain in neck area/ head congestion - do you reckon it might be the 'shower' - I usually look foward to a fairly hot shower in the a.m. as it usually makes me feel better - pain wise anyway.
Back to the 'magnesium' topic - I would like to try it, I would love to get a refreshing nights sleep - I think I would feel a lot better in general.
If you are having trouble sleeping, you might consider taking magnesium supplements -- I know when I was very very ill early on, I was useless all day and then started to wake up about 3 pm ... and I was in okay shape from then until at least midnight, and sometimes could work into the wee hours. There was something about Lyme that skewed my sleep schedule and made my sleep not all that refreshing.
Then I read that Lyme bacteria use up magnesium in their reproductive process, but blood tests don't show low magnesium levels, because most magnesium is not floating around in the blood but is held inside cells. So as the bacteria use up magnesium from the blood, the body takes magnesium from the cells to keep the blood levels stable, but the doctor's tests are not able to show how low the intracellular stores are getting. (That is apparently why I was getting heart palpitations and irregularities when I was first very ill with Lyme. It sent me to the ER twice in a week, because magnesium is necessary for smooth communication between cells, including heart cells so they know when to beat.)
Magnesium helps sleep, which I also read is one reason babies getting all floppy after a nice warm bottle of milk. It's warm, it's a full tummy, and it's also got a bunch of magnesium in it.
Magnesium is also a laxative, so too much will cause diarrhea. I had a not-Lyme-friendly MD warn me against taking 'too much' magnesium because he said it could damage the kidneys, but I've also read that when you get diarrhea, you know you've taken too much, so back off.
I had been taking 150% of minimum daily requirment (MDR) when the not-Lyme-friendly doc made that comment about 'too much', and I never got diarrhea, but I did back off to 100% of MDR and that's what I take now. Given that I probably get some magnesium from my diet, I'm getting something over 100%, but all is well, and it does help me sleep.
How do I know it helps me sleep? I was taking magnesium pills each with 1/3 the MDR, so I took 2 in the morning and 1 in the evening. For several hours after taking the morning dose, I was drowsy and couldn't figure out why, so I switched to taking 1 in the morning and 2 at night. Problem solved! Currently I'm taking a different brand that has 50% of the MDR in each pill, and with one in the morning and one at night, I'm fine.
Sorry for the loooooong message on magnesium, but wanted to give you the whole data dump. Hope it helps!
If we ever form a rock band, we can call it 'Seaweed & Speakers'
ha ha ha!!!
Well done for keeping a daily log, I have never got around to it, though when I am having some bad days I remember to put something on the calender, the latest thing I do is put marks out of 10 - not really ideal! I am going to make a graph for my 'stuff''.
I hope you aren't 'over-doing' work - I like that 'good tiredness' feeling you mention - it is rare of late, it's more of a 'oh well better get into bed and see if I sleep tonight'. I remember the nights of just going to bed without 'wondering' what symptoms would have arrived by morning, or on a brighter note - what might have disappeared.
I hope you haven't had any 'Seaweed' today - I haven't had any 'Speakers' !
No, I can't find any triggers that make the seaweed effect or any other symptoms pop up. I think the 'bugs' run on their own schedule and don't bother to let me know when they decide to party. (How rude of them!)
I keep a daily log of symptoms but haven't been able to find any regularity or triggers to the Seaweed Effect or anything else. I have been feeling well enough lately to work harder and longer hours, and it is really wiping me out some times, but that could be just being unused to long hours anymore, along with having forgotten what the 'good tiredness' at the end of a hard day's work feels like.
Having your nephew finish assembling the carpet washer sounds like a good approach: when you 'hit the wall', take care of yourself -- everything else can wait. Hope you're feeling better now.
I am thinking - Uhmmmmm --- nope I can't come up with anything as any kind of explanation - not for myself either - it is always reassuring, in a 'not my imagination' sort of way, when someone else on this forum has the same/similar - wierd/unexplained - stuff.
I am wondering - when the 'seaweed' thing happens are you feeling 'rushed/stressed/over-doing things' - or is it random?
Do you ever feel that the slightest amount of 'stress' [in whatever form] makes you feel 'ill/odd' ? I do, though some days it all just flows by me with no apparent effects.
Probably not explaining myself well - I hope 'Wonko' can elaborate.
A 'for instance' - yesterday I was simply putting a carpet washer together, which involved clipping 'clips' to a hose - not rocket science - after a minute or so I started getting the 'short flare' feeling - so I left the job to my nephew.
That sequence you describe is not unlike something that I go through. Mine begins as a sort of 'wave' flowing through my head that makes me a little dizzy ... dizzy is not the right word, but it feels like what seaweed looks like as it gently waves back and forth in seawater. That's the best I can come up with!
Then the feeling leaves my head, goes down into my arms and body, my gut contracts a bit, and I'm left feeling just tired and sometimes a little confused. There is sometimes a warmness that comes and goes as well. The whole seaweed-to-confusion event lasts perhaps one or two minutes at most.
Then over the next day or so, my lower back aches, then my knees, then sometimes my feet, and then I'm okay.
Anyone got any ideas??
AH! - I was beginning to think I was on my own with this one!, for me it started about a year into this - it would rise up through my body and stop about the base of my skull - I first noticed it whilst driving, I almost pulled over but my Mum was in the car and I didn't want to worry her- I carried on a conversation as 'normally' as possible with my mind thinking 'what the heck is going on'!!, it scared me I have to say, I wonder if 'non-lymies' ever get this sort of wierdness.
You are so much better at explaning 'symptoms/sensations' than I Wonko.
I also am wondering if anyone else gets this sequence - random pain then wave of depression then a rise in all over temperature then anxiety then fatigue - all in the space of about 3 minutes?
These short 'flares' are what prompted me to go back to LLMD. recently, along with joint pain getting much worse in knees/wrists/ankles.
Oh, I get this! In fact, this was a little quirk I developed long (years) before I "knew" I was sick. (I just thought that I was special, I guess, as I seemed to have all of these extra features that others didn't have, or certainly didn't comment on.)
For me this started out as a more local sensation, often near my hips. The location and intensity often made me mistakenly think that I had my cell phone on vibrate and that it was going off, only I'd pull it out and the vibration would continue.
As I became more sick, I would experience the sensation in a more all-over way, in which case it would better fit the gorby speaker description. For me, this is generally an intermittent symptom that occurs sporadically. Usually each burst lasts around 10 seconds, then it will go away.
This symptom has improved with treatment, but I'm still prone to it from time to time.
I get the buzzy, more electrical like sensations, too (along with burning sensations and tingling sensations), but those are a bit different, as with the vibrations it really feels like your insides are moving on a frequency. (Perhaps they are, but if so the amplitude is small so it is not outwardly notable.)
Gosh, gorby, you got us stumped! My 'speakers' aren't on like yours are, but I get little buzzy feelings down the back of my shoulder and other places sometimes too.