posted
Ugghhh...I could really use some good, sound input. I feel like the medical world is spinning cluelessly around me.
Here's the spot I'm in:
After being sick last summer, I'm feeling pretty well now. I went through a lot of symptoms...fatigue, fever, rash, lightheadedness, racing heartrate. Now I'm having neurological problems almost exclusively at night, which have taken place for about a year.
I've spent so much time researching what could possibly be causing the vibrations and muscle twitches that take place at night. It literally feels at times like my brain is vibrating inside my head. I've met with a local neurologist, who pretty much told me that this sensation is impossible since there are no nerve endings in the area.
Now, my general physician wants me to try another neurologist. I can't find any information on what would be causing this, but it absolutely has to have something to do with the sleep cycle and my brain.
Does Lyme interefere with neurotransmitters or could there be a certain chemical by brain is/isn't producing during sleep? I can see this is going to drive me batty trying to figure this out.
Happy to hear your thoughts on this.
Thanks, Will
Posts: 131 | From MD | Registered: Jul 2008
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glm1111
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posted
I have had internal vibrations for yrs. Lyme disease has a MAJOR parasite/worm connection. After 3 yrs of treating myself with antiparasitic herbs and salt/c they are almost gone.
I think that these parasites are active all along the G.I. track and when active cause the vibrations. They are particularly active at night, but I forget why. Check out
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Sure could be Lyme and co's. Have you had a positive test?
Could also be parasites, but I don't have the same recommendation as glm.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Will,
You're right I have posted this same info many times. I do it because there are many new people here who haven't seen it and are looking for answers as to why they are not getting well.
Many have pmd me because they need more info on this.
Quote
"I have spent so much time researching what could be causing the vibrations and muscle twitches"
Apparently it hasn't sunk in that this could be a possibility. It baffles me why you would repeatedly ask for help and then be so rude when someone trys to help you.
Some people just can't see the forest through the trees,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
This is the only post you ever make, so don't act like you're trying to help me. I don't exactly see others pouring in here with their photos.
Posts: 131 | From MD | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i definitely think these co-infections and all could be a source.
do your research on bartonella and all. some people do have problems with worms, parasites, etc.
some have used a product called humaworm and found it helpful.
it's all a big puzzle and everyone is different.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
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posted
Will,
Gael is a good person doesn't deserve that response. Anyway, I have brain stuff that happens ONLY during the night, similar to what you are experiencing. Also breathing issues that are a result of a brain breathe disconnect.
Don't know if it is lyme or a co-infection, but it has something to do with the whole TBI business.
My personalopinion is that yours is also TBI related and you need to treat longer, if you are not still doing so.
I doubt that a non-lyme neuro will be able to enlighten you in any way on this.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I'm sorry, Gael, for the rude response. I'm just extremely frustrated and it didn't help seeing these jokers that post their bogus photos here while others are trying to get well. My apologies.
Gael is a good person doesn't deserve that response. Anyway, I have brain stuff that happens ONLY during the night, similar to what you are experiencing. Also breathing issues that are a result of a brain breathe disconnect.
Don't know if it is lyme or a co-infection, but it has something to do with the whole TBI business.
My personalopinion is that yours is also TBI related and you need to treat longer, if you are not still doing so.
I doubt that a non-lyme neuro will be able to enlighten you in any way on this.
Feelfit
feelfit...
What kind of breathing issues are you having? I have noticed at night that I don't breathe deeply when in a deep sleep like I used to. My breathing seems shallow and I wonder if my symptoms are a result of insufficient oxygen. Perhaps this would explain some of the numbness I get after several hours of sleep. Maybe my body is starving for oxygen?
quote:Originally posted by randibear: please consider that some of these photos are not bogus....
look at morgellons photos and you'll think it's something out of a sci-fi movie, but it's real.
I don't doubt that some of them are legit. I was referring to the spammers that have been on the site lately posting photos of bean sprouts and such. I didn't find any humor in that.
Posts: 131 | From MD | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
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posted
FYI...This was specific to your questions about vibrations which you can't seem to find an answer too...
I had the same symptom for yrs, so yes I was specifically trying to help you. I have found the parasite connection to be a big missing link and it was the lymephotos site and info that helped save my life.
These are not my photos...but it was this particular site that helped me get well..
.P. S. I have a medical background and there is a lot more info and posts that I have given people other than this particular info,
Gael
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I get internal vibrations too. And I've read a lot of people posting that, but i'm not sure what causes them. My guess would be inflammation in the CNS.
Mine aren't just in my head though, they're in my whole body. I think it was i Lymetwisters last post too that he gets them in his head either at night or in the morning.
I don't have any great answers, just want to keep this post on top in case someone else does.
posted
Gael...are you treating with abx?
Posts: 131 | From MD | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Will,
My breathing is shallow and documented as such on a sleep study. Also, my breathing becomes very shallow as I am just drifting off to sleep and then it stops cold. I have to sit up and tell myself to breathe.
It was happening every night 5-15 times, I could never fall asleep. Lately, it has not been happening.
I am, however, shallow breathing when I am relaxed and down for the night. For me it is definately a disconnect in brain signaling.
Oxygen could also be an issue. Babesia comes to mind. Have you treated it? Babesia affects the red blood cells and makes us feel oxygen deprived....we actually are, but it won't show on a pulse ox.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
My doc tested me for babesia (through local labs) and it was negative. I have taken zithromax and it really stirs up the vibrating symptoms. I'm not sure why that is.
Posts: 131 | From MD | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
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posted
Thanks for the apology Will, and of course accepted. (Thanks for your support FF)
I understand your frustration about the spammers that were on here and I agree that it was very mean.
In fact I found it so offensive that I reported them to the moderator. Anyway, moving along, I hope you can find an answer and get some help. This is a very frustrating disease...
Peace,
Gael
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feelfit
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posted
How long did you treat? Are you still treating? Do you see a LLMD? I know a good one in MD.
Posts: 3975 | From usa | Registered: Aug 2007
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glm1111
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posted
Will,
I was on antibiotics for 4 yrs including 6 mos of IV rocephin. I am sure I needed the abx because my bacteria load was very high.
However, I just couldn't get well and in all the research I had done over the yrs, it never dawned on me that these parasites could be causing me to be so sick until I found the lymephotos site on lymenet.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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quote:Originally posted by feelfit: How long did you treat? Are you still treating? Do you see a LLMD? I know a good one in MD.
I have been treating for over a year now. I would appreciate it if you could send me the name of the LLMD in MD. Thanks much.
Posts: 131 | From MD | Registered: Jul 2008
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I was on antibiotics for 4 yrs including 6 mos of IV rocephin. I am sure I needed the abx because my bacteria load was very high.
However, I just couldn't get well and in all the research I had done over the yrs, it never dawned on me that these parasites could be causing me to be so sick until I found the lymephotos site on lymenet.
Gael
Are you using the salt/C protocol and is it helping you to get well?
Posts: 131 | From MD | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Gael has posted some long, helpful responses to individual questions / issues I've had in other threads. I appreciate it. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
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posted
Thanks Seek......
Will
yes I am using the salt/c protocol (sea salt)and have been doing it for over 3yrs.It saved my life along with the antiparasitic herbs I took/take.
I think I am pretty close to remission, I hope so anyway. Sea salt is a natural bacteriocide and puts the parasites into osmotic shock which makes them release.
I find the antiparasitic herbs to be very helpful also. The key is persistence and to just keep going.
Sounds like you have a lot of your symptoms under control, so it may not take you as long to get well.
Gael
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IckyTicky
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posted
The vibrations I've had for a few years now. I'm telling you when it first happened I yelled for my husband, who came rushing into the room. I thought the BED was vibrating, not ME. I was scared to death thinking there were unseen demons shaking my bed or something. The hubby, of course, thought I was nuts because HE could not feel a thing vibrating. My twin sis has the same thing.
I do think that parasites are a big factor in this disease and our symptoms, but if it were the cause of the vibrations why does the vibrating go away when I move? Or why does it only happen when I'm falling asleep or waking up? It sure seems sleep related. But I've had a sleep study come back just fine and dandy.
I have always sort of "felt", though, that it was due to inflammation of nerves in the spinal cord. How that would cause vibrating like that, I don't know. Just a feeling I get. Because when I move, it goes away.
Sometimes it feels like my whole body. Sometimes it feels like it's coming from the center of my chest. Sometimes it feels like it's coming from my brain.
I also wake up feeling like I have not had enough oxygen. And I wake up with limbs tingling and feeling like they have not had circulation. I wake several times a night having to change positions due to this.
The last time I went to the ER the monitor kept going off because my HR was dropping to 49 when I was sleeping. Nobody seemed concerned at all, even though the alarm kept going on and off, on and off. I wasn't on anything that would cause my HR to be so low. I wonder if that is what is happening at night, and if that is why I feel I'm not getting oxygen to all the parts of my body. It's a little unnerving.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
i had my neurotransmitters tested, not difficult or too expensive to have done almost everyone of mine was off some a lot.
My doc say's I have a hypothalmic Pitutary axis problem. It maybe worth having the tests done.
I have had head tramas along with the lyme and I am quite sure I have parasites as well.
If it showed up that you had say one or two neurotransmittes off maybe you could add supplements or some other treatment that may help a bit.
It is so hard to know if something is a symptom, cause or result or which layer of treating will help the most. I have had some symptoms but not what you are discribing.
I have a new eyelid twitching shaking eye thing which is painful and making me a bit nuts.. scared me enough to get a CT scan but showed. I also have the usual headaches, brainfog etc.
Hope you find something that helps
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glm1111
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posted
The minute I drink the salt/c the vibrations start up. I can actually feel the parasites running around because they hate the salt and try to escape. (this is also noted on the lymephotos site)
I can feel them wiggle around and buzz in my head and nose.(much less than it used to be) Enough people on this board have complained
about crawling, biting and stinging sensations. I have gotten far enough and lived long enough with this that I know for sure that this is causing MY vibrations. I can't speak for anyone else, but it just makes sense to me.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Will, could you elaborate on your background concerning your illness last summer? Was it flu like when it started? Have you had neuro oddities come and go the past year? Any other changes throughout your body?..meaning..digestive?, hormonal?, muscular aches, arthritis?, sexual?, migraines?, cognitive, emotions, sensory issues, etc. ....(just going through the normal lyme questions)
To answer your original question, yes, you can have odd, weird vibrations in your head. I had vibrations, burnings, twitches, feeling of hot water streaming down my skull, etc during my treatment period. When I used to listen to music, it really, really used to make my head come alive. I now question if I wasnt hitting certain frequencies the lyme didnt like, or if it was simply a case of certain areas of the brain refiring, healing from the meningitis/encephalitis damage due to lyme.
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