cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i just woke up and multiple parts of my body are now numb/ feel like they are asleep and it is very very scary. my right side of my face.including my head.and mostly my neck.....my right hand...right side of my neck right arm...which makes typing tough...my butt...my chest my back....my lower right leg....at first i thought i was laying strange...but this is not going away...even my throat feels numb....
I dont know when the last time was i got a full nights rest...something is always waking me up... maybe its not lyme....i wish my blood tests were back already!!!
all i know is this is all very scary..and i just wish it would all go away.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I am so sorry you are having this numbness. It is a VERY scary thing! Dont give up though! And dont doubt your gut feeling.
I was diagnosed with lyme in May of this year and I had exactly what your talking about. Its very scary but with treatment with antibiotics it will get better. Each person is different on how they respond to the antibiotic. But ALWAYS keep a positive attitude.
I got scared just like you when I was going through all this. I had positive westeren blot test from IGENEX and my Neurologist wanted to diagnose me with MS and I received a HUGE amount of IV steriods. WHich is NOT GOOD IF YOU HAVE LYME! Which I wish I knew that at the time.
My neurologist knew I had positive lyme tests and still told me to my face, I dont have lyme. His treatment nearly cost my life and now I am suffering from it. I put my trust in him and YOU CANT DO THAT! YOu have to stand UP for your self and take control of your health! So now from all the steriods I have recevied. I have the possibility of being chronic or just have a VERY VERY long road of RECOVERY!
You know that They wanted to diagnose me with MS and I didnt even fit all of the criteria for that disease. But yet thats what they were going to label me. I am so glad I went with my gut feeling.
I did have the exact thing you are talking about. Numbness on whole side of body. Even my butt, belly its the weirdest feeling. But You can and will get better!! Dont worry!!
Lyme could be very Likely for you especially if you have a list of the symptoms. I would make sure a LLMD told me I dont have lyme before I went to another doctor to see whats wrong!!
Hang in there!!
Posts: 61 | From ILLINOIS | Registered: Nov 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
BBWagoner is right. Many people get innappropriate treatment that worsens their condition! Most docs really don't know!
Unfortunately, many docs are willing to give the MS label and those treatments can actually worsen your lyme. Please see a Dr. recommended by someone on this board. That really is your best bet.
If it's Lyme and you get steroids your in trouble ........... if it's MS and you get ABX you are no worse off. May as weel go the ABX route first. There is even some research that says MS is helped by ABX (probably because it wasn't MS, but actually Lyme to begin with.....but that's another topic).
I had many one sided symptoms like you describe .... they wanted to give me steroids. I refused ..... I had a tick bite 6 months previous and the Drs. just wrote this off because my labs were negative for lyme.
I have been in treatment now for 19 months for lyme and I am getting improvement.
Get to an LLMD. Do not listen to the doc that is telling you MS.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I agree this is most likely Lyme but it could also be symptoms of a stroke.. If you can't get intouch with your LLMD you should atleast go to the ER to rule that out...
quote:Originally posted by cantgiveupyet: i just woke up and multiple parts of my body are now numb/ feel like they are asleep and it is very very scary. my right side of my face.including my head.and mostly my neck.....my right hand...right side of my neck right arm...which makes typing tough...my butt...my chest my back....my lower right leg....at first i thought i was laying strange...but this is not going away...even my throat feels numb....
I dont know when the last time was i got a full nights rest...something is always waking me up... maybe its not lyme....i wish my blood tests were back already!!!
all i know is this is all very scary..and i just wish it would all go away.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Can't, I've had a lot of experience with numbness as a part of my Lyme disease. In fact, as I type this, my fingertips are all numb.
I did get a CDC-positive test result for Lyme, but my numbness problems (first just in my right foot) got a LOT worse once I was on abx. Now, after 5 months, they're beginning to diminish a little, but they're still bad.
At various times, I deal with numbness in fingertips, foot, lips, face. My symptoms, like yours, are unilateral. I was told that was a big alarm for Lyme (mine also on the right side!)
I have had several MRIs which have all been "normal" acc. to duck neurologist.
Send me a pm if you would like any more info. By the way, i haven't found anything that really helps this situation. Maybe epson salt baths and dry-brush detoxing...
It's scary, though; I know what you mean!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i have an llmd, but we are waiting for blood work.....i just dont know what to do....it seemed to go away and now is back. llmd did not put me on abx yet.....this could be a stroke and i hate ER's
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
My niece gets the numbness too when her yeast is flaring.
Are you on any yeast fighters? If not, I suggest you start - stay away from foods that encourage yeast and take probiotics and caprylic acid or something else to whack the yeast upside the head.
My niece is 18, so when her friends had Chinese take out, she got some too - bad idea! She paid for it the next day with major numbness in her limbs and a weeping fit. Reminded her about yeast, she took her supplements and felt much better. Now if I can just figure out how to get her to take them every freaking day...
Remember, you don't have to be on abx to have a yeast issue. You also don't have to have any outward signs of yeast (like a vaginal yeast infection or something) to be having a yeast issue.
Kick some yeasty *** and see if you don't feel better - at least a bit!
Good luck.
Posts: 369 | From Ohio | Registered: Mar 2002
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i swear all i do is cry.... i have myself to blame i think....yesterday i had one of those microwave brownie mixes(not sure if i mentioned that)...then some gatorade before bed..and some regular pasta and sauce....i thought ah what can a lil real food harm....then whamo im hit with this numbness....before all of this numbness down below was hurting a tad(not to go into too much detail)...
will the probiotic harm me if i dont have yeast and this is some kind of strange symptom....
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
This numbness is very common with lyme. I believe it is a toxin buildup that pools on the side of you body. Usually the side you are sleeping on.
I still get this after 1.5 years of treatment, but I can literally shake it off in a second or two upon waking. During the night I wake up often to find myself numb on one side, the side that I'm sleeping on. I turn over only to wake up a little later numb on that side. Then I try sleeping on my back and the heels of my feet get numb.
I was thinking it was just the way I was sleeping, but I don't think so. It seems to follow with herxes. When I'm feeling well overall, I don't get this.
Your body is trying to fight the lyme and this is what you end up with. My suggestion would be to detox somehow. Some one mentioned a epson salt bath. I think that is a good idea. You can even add a bottle of Hydrogen Peroxide to the water. These have helped me. Be aware, however, that if the water is sufficiently hot, it will kill more spirochetes and generate more toxins. This is why detoxing is so important.
So, in a way, you can actually start "treating" yourself a some degree while you wait for test results and abx. These hot baths will work believe me.
At the beginning of the disease, I tried one hot bath without the salt or peroxide. I took a strong sleeping pill and slept soundly on one side most of the night. I woke up with the numbness on my side and I couldn't "just shake it off". It stayed with me for a couple of days and then once it went away, I had rhythmic twitching on that that side for a couple days.
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks.... I usually dont like taking baths...is there anything else i can do to try and detox. i was able to shake off some of the numbness...but my right side of face lower back and groin area are numb...its not as numb as it was before though. I agree i think it has something to do with what side we sleep on.
I already have an eye twitch on this side of the face.
I also notice if i sit for just a lil while parts of me will go numb rather quickly..
I only hope and pray that my tests come back with a big positive and abx help.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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It is so hard to feel sick, scared, and like no one is able/willing to help you. I know - I am in the middle of that, too. Although things are looking up for me with antibiotic treatment. You may want to consider insisting on antibiotics prior to test results... may help more than harm while you rule out other ills.
My symptoms began as the severe numbness you are describing - on my whole left side (you can search my previous posts for the details). It was terrifying.
After about 5 days of severe numbness/tingling - and two doctors who told me it was anxiety, I had what I thought was a stroke. Numbness overtook my head/cheek and it felt like my cheek and eye were being pulled downward. My face was left slightly askew (mild bells palsy?) My left arm which was also tingly felt weak and like jello. At the ER that day, they did an ELISA test, basic bloods and CAT Scan which was negative. I did request MRIs to further rule out stroke and MS. All were normal so I felt much better asserting to the doctors that I felt I had lyme. They all said I was so anxious (well - yeah. Wouldn't anyone be??) Numbness was bad for maybe 4-6 weeks and I also cried alot. Ended up in the ER two weeks later convinced I had a stroke again.
I kept pursuing until I found an LLMD who did a clinical diagnosis despite a Western Blot (quest) with only 1 positive band. I have been on antibiotics for just over 2 weeks and have had several days in a row with no numbness - although it does return, it is not sustained and not as severe. Also fatigue/feelings of helplessness are lifting a bit.
Keep pushing through. You will feel better just by being your own best advocate and arming yourself with good information.
Wishing you well!
lymeornot(I'm sure its lyme!)
Posts: 18 | From New England | Registered: Oct 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
MAGNESIUM DEPLETION.
Get to the store (or send someone), and start taking the largest amounts your body can handle (without it running through you). I'd start with 100mg Magnesium 4 times a day and work to build up on it. It's a very inexpensive supplement, and one we are all depleted in.
Search for posts from Marnie.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
guess what im in luck....i have magnesium :-) my nuerologist told me to take that along with B2 and one other co something vitamin. he diganosed me with migraines. Of course i dont take the magnesium everyday....but did notice when i was having the severe pelvic pain the mag and b2 seemed to help. i have plenty left and im going to go take some of it. this face numbness makes it so tough to talk....i just want to lay in bed all day ...
I also have some almonds...that i plan on eating a bit later after i make my NO sugar breakfast.lunch....
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
You may try a few things and perhaps one of them will work:
Cholestyramine (such as 3 times a day) for a few weeks to remove the biotoxin
Magnesium for a few days (shots are better than oral forms)
Avoid tomatos or potatos for a week or so (in some people they deteriorate symptoms of Lyme).
Check yourself for sleep apnea (Sleep apnea is frequent among Lymies and it aggreviates symptoms through the night when oxygen drops too much)
Good luck in your search
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Whoa, yeah - got to address da yeast. Weeping and feeling depressed and numbness can all be yeast-related...even if it is Lyme, yeast can really aggravate those symptoms (and so much more - ah, the joys of yeast!).
I agree that the magnesium is a good idea (you're twitchy - a sure sign that you need it).
A probiotic won't hurt a darn thing (just start with a low dose until you know your gut tolerance for it) and may certainly help.
Something to kill the little bastards would be a good idea, too - some folks like oregano oil (too manly for my girls), some go with diflucan or whatever prescription they can get, and some go with caprylic acid (works best for my kids when they remember to take it - teens!).
But yeah - you have got to stay away from the sugars and starches, darling. It's not fun and it's not fair, but that's the way it is. You'll feel better for it. Good for you having almonds!
Feel better.
Posts: 369 | From Ohio | Registered: Mar 2002
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
thanks, i took the magnesium and thought i felt a minor improvement...i have 250mg tablets which is great, so i will take another one with dinner.
gosh didnt realize tomatoes were a no no.....whoops....i had some veggie juice(tomatoe based)..tomatoe sauce with dinner...
im going to order some probiotics right now..and look into the other things that were mentioned....
sheesh looks like i really poisoned myself with yesterdays meals.... :-/
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
The numbness on one side and crying jags are typical lyme symptoms...
A lymie can also experience a TIA and later have no signs of it in cat,mri's...
Don't worry too much...this to will pass with treatment and time...I promise.
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
what is a TIA (im afraid to ask)...
i keep crying and my head is killing me from doing so...i need to seriously get a grip. I need to think positive thoughts and just calm down.
i feel so really messed up....and i really do not know what i would do without everyone on here. I have never come across so many caring people as the ones on this board.
i hope this numbness passes...but im almost afraid to see what maybe next.
I did go out tonite shopping with my mom..i bought a very soft comforting blanket :-) and guess what the store lights didnt bother me...no vivid vision or anything...if i didnt feel so infected , well i would have been normal again.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Good for you! You've got a plan and a course of action. Stay positive!
Lyme and yeast seem to walk hand in hand - best buddies, they are.
My niece (the one who gets the numbness in her limbs) also gets the fearsome headaches with her yeast flares -- and the crying jags don't help her head, either, poor dear.
Do you have any epsom salts (and baking soda) to take a bath in? That'll help get some magnesium back into your system, too.
Remember - you've got a plan, you've got a course of action. You're back in control! And you CANTGIVEUPYET! Posts: 369 | From Ohio | Registered: Mar 2002
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