I know I had Lyme (Lyme meningitis and years of treatment). Now my symptoms consist of temporary paralysis and muscle weakness. It usually happens to coincide with my period. Today, for example, I woke up and couldn't move at all, for an hour. The movement comes back thankfully, but then I'm left with fuzzy head, severe fatigue and I can't walk properly for a couple of days - my legs are just not strong :confused: :confused: :confused: . I haven't been able to find much online about Lyme patients having this kind of paralysis. Does anyone know about this? I know my family are starting to think it's either hormonal, or mental. I think it's Lyme - but I'm starting to second guess myself. Any comments gratefully received!
Posted by GretaM (Member # 40917) on :
It's not you-it is lyme.
I've had this, for about a 3 month stretch before my lyme dx.
Occasionally, when lyme flares, my left leg loses its reflexes, my left hand can't grip.
Posted by patch (Member # 42612) on :
Thank you for posting that. I don't think I can take this anymore. I guess it's time to go and get treatment again. I know my family don't believe it's Lyme. I feel quite isolated.
Posted by Lymetoo (Member # 743) on :
I know of others with Lyme who have had this. Make sure you have a good LLMD.
Posted by Keebler (Member # 12673) on :
- You say: " woke up and couldn't move at all, for an hour. The movement comes back thankfully, but then I'm left with fuzzy head, severe fatigue and I can't walk properly for a couple of days - my legs are just not strong. . ." (end quote)
Yes, I had this happen frequently.
Also, most often upon awaking. Also at some times during the day when exhaustion just hit so hard, could not move a limb for many minutes or an hour - until I just went with it, shut down - wherever I happened to be -- for some "aggressive rest" -- then after a rest, I could move but still very weak, etc.
I have read that this has happened to others with lyme -- and it has to do with the various nervous systems (and also the adrenal dysfunction) caused by lyme.
It can get better but, right now, try not to be too alarmed by it just know that if you wake up or find yourself like this during the day, it's your body's way of saying "nope, not now Honey. Not moving. Later"
I hope you have a LLMD as it is really important they are aware of this. Call them about it.
If small children (or even "medium" children) are in your care, be sure your LL doctor knows this.
Certain Rx could also be involved. Be sure to check on that, especially any sleep, anxiety, pain meds or antidepressants.
Remember, though, that this can lift. Still, after reviewing your medicine for possible interference there, call your LL doctor TODAY about this. Someone who is not a LLMD will not know enough about all this.
There can be various factors but it is most certainly referred to in articles I've read about lyme and in my own experiences.
I just have to add here that whoever even gave a thought that this could be "mental" -- it's time for some serious education about lyme.
And even if a symptom may not be known to be related, why - oh, why - would ANYONE think it's "mental"? Where does that leap come from?
There is so much about the human body - and so very much about lyme, other stealth infections - that we just don't know. But, for anything, it is never - ever - helpful to just assume something is "mental" even if that is the way most regular doctors laz-out.
And, why in the world would you start to "second-guess" yourself? -
Posted by Keebler (Member # 12673) on :
- This may be one place I've read of the intermittent paralysis. I can't recall, though, it's still excellent for lyme education.
"Required" reading for anyone who really wants to understand. Plan something refreshing for yourself after pouring through this. Take it in steps, it is a rough format so you may want to copy, paste and then change font and add some space breaks for your "study" copy.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all), etc. -
Posted by patch (Member # 42612) on :
Thank you! for all of these postings. It is very helpful. Unfortunately I don't have an LLMD at this time, though I have had in the past. I need to find one.
Posted by Keebler (Member # 12673) on :
- Sorry you can't access a LLMD. I've never been able to, either (after a couple consults with several different ones over the years). While I'm still far from okay, some symptoms have seen improvement - including the frequency of the paralytic episodes.
I think Hepapro's Allicin protocol is what helped me leave that (mostly) behind.
Cranial-sacral therapy may also be of help. Best if they could be somewhat LL but not necessary - just don't focus on lyme with them but the structural support.
[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]
LL ND (Naturopathic doctor) links here, too, with articles & books for various approaches. -
Posted by Keebler (Member # 12673) on :
- Qi Gong, too. In many ways, it was essential support and also taught me better self-compassion and patience.
And when your body says it just can't move, there are some nice Qi Gong mind exercises that can help -- or more precisely - allow your body to rest better to recharge when it can.
I hope you can find a LLMD very soon. Until then, suggestions above might be of help. Take care. -
Posted by Keebler (Member # 12673) on :
- Get a STREP TEST
Just remembered that the first time this happened to me I had just been diagnosed with strep throat. I was on antibiotics for that. Could have also been "herxing" as lyme had not yet been diagnosed but might have added to the toxic load.
I was out and about and my legs would just not work. Taken to the ER, where after waiting for quite some time, they got better enough for me to drive home. But I was so out of it for days after that - and other times it would hit during the day.
When it happened in the mornings, as long as I worked with it, it did not seem to zoom me back too far.
Even if you don't have a LLMD, you might want to have your PCP do a strep test. I know strep can cause this kind of thing (as in line with PANDAS symptoms).
I might have also been taking some kind of sleep Rx (which I later found out was never a good idea for my body and usually made this worse).
While PANDAS (strep with neuro issues) seems connected to children and teens, adults can be affected, too. You might find the best PANDAS sites and locate a doctor who knows more about this for a long range treatment plan if strep is involved. (Especially for someone who also has lyme.)
As with lyme, most regular doctors don't understand the kinds of neuro issues that can come from strep or the need for complex treatment. Still, you may have a better chance finding a doctor this way. -
Posted by patch (Member # 42612) on :
Thx for all the advice. My 'episodes' are very consistent in nature. Paralysis - or just severe weakness and fatigue almost as if someone's put one of those lead aprons on you like they use in x-rays. Fuzzy head, trouble speaking, no pain exactly but real discomfort, then some sweating and itching and two to three days bed-ridden but able to just about get to the bathroom, followed by a day or two of moving about but with really wobbly, slow legs - having to hold on to things for balance. I was diagnosed 12 years ago when they found Lyme in my spinal fluid after being hospitalized with Meningitis. I've had tons of abx - but not for five years or so. In between current episodes I am more or less normal apart from the need for a lot of sleep and a bit of a fuzzy head here and there. I will look at all your links - and thank you for taking the time.
Posted by Keebler (Member # 12673) on :
- I didn't say anything with the first post and just skimmed what I could -- but really can't read this last one. Many here have trouble reading solid text. So, breaking this up:
patch writes:
Thx for all the advice. My 'episodes' are very consistent in nature.
Paralysis - or just severe weakness and fatigue almost as if someone's put one of those lead aprons on you like they use in x-rays. Fuzzy head, trouble speaking, no pain exactly but real discomfort,
then some sweating and itching and two to three days bed-ridden but able to just about get to the bathroom, followed by a day or two of moving about but with really wobbly, slow legs - having to hold on to things for balance.
I was diagnosed 12 years ago when they found Lyme in my spinal fluid after being hospitalized with Meningitis.
I've had tons of abx - but not for five years or so. In between current episodes I am more or less normal apart from the need for a lot of sleep and a bit of a fuzzy head here and there. I will look at all your links - and thank you for taking the time.
(patch, South Carolina) -
Posted by tic chick (Member # 9156) on :
My son had quite a lot of paralysis as part of his lyme journey this last summer.
In his case we found that he had a viral load that was triggering this.
It was scary, but it did pass once we treated the viruses.
Posted by Judie (Member # 38323) on :
I feel the weakness you described EVERY DAY. It's worse during my period. Definitely Lyme. It feels like I'm an extra 500 pounds.
It came on after the bulls-eye rash and hasn't really left, although other symptoms have gone away with treatment.
Posted by lpkayak (Member # 5230) on :
i have had it on and off since the beginning-over 20 yrs ago. for me i think it is often extra inflammation around vertebrae---just enough to put pressure on a nerve...somehow when inflamm is resolved...i am able to use muscles again
it also makes me incontinent in a really sporatic way
Posted by DanP (Member # 7501) on :
I have been having the sensation that I am going to wake up some morning paralysed..I have been waking up throughout the night very achy in lower back and hips and then in the morning I wonder if I'm going to be able to move my legs to get out of bed
I've been taking tramadol and ibuprofen for an extracted tooth pain
I'm also on zhang's allicin herbal remedy, and I take various other vitamins, etc
But these symptoms seem to have worsened since I had a sore throat, congestion, cough, headaches, about six weeks ago that took forever to go away...still suffering from a dry cough and some congestion, had some augmentin then bit it still took weeks to get better
I'm intrigued by the possible strep connection
I've had strep in the past
But no sore throat now
Could it be strep?
This morning as I type the sensation that I'm not going to be able to walk is really bad...I don't know where to go next, the ENT guy again?
Posted by DanP (Member # 7501) on :
I have been having the sensation that I am going to wake up some morning paralysed..I have been waking up throughout the night very achy in lower back and hips and then in the morning I wonder if I'm going to be able to move my legs to get out of bed
I've been taking tramadol and ibuprofen for an extracted tooth pain
I'm also on zhang's allicin herbal remedy, and I take various other vitamins, etc
But these symptoms seem to have worsened since I had a sore throat, congestion, cough, headaches, about six weeks ago that took forever to go away...still suffering from a dry cough and some congestion, had some augmentin then bit it still took weeks to get better
I'm intrigued by the possible strep connection
I've had strep in the past
But no sore throat now
Could it be strep?
This morning as I type the sensation that I'm not going to be able to walk is really bad...I don't know where to go next, the ENT guy again?