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05/26/2012 07:31 AM

Shaky feeling inside my head & Body

wanthealth12
wanthealth12Posts: 309
Member

here we go again....another symptom, I dont know how to handle.

My doctors office did not call me yesterday so here it is saturday and a holiday weekend

(please NO ER VISITS) for me today, is what I pray!

is this what tremors are?

I feel like all my nerves are misfiring bad today on top of this internal shake I feel.

what is this from?

is this a normal side of nuero lyme or just mean its more advanced or does it mean.....your body is not expelling th endotoxins and its irritating the nervous sysytem?

I also feel extremely hormonal....(not that time either) and

very agitated.I woke up like I was gonna bust a wall in and this is not me.

Im 5'1 and ver small and non-violent type.Bad Mouth.....but not violent.

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05/26/2012 07:46 AM
jbailey
 
Posts: 292
Member

Hi, unfortunately I have this too. Mine comes and goes as do most of our symptoms. I cannot really attribute it to any one thing that I do or change. For me I am starting to put my finger on symptoms and when then seem to cycle. For me his was difficult because I am always so scared when a new symptom appears that I am getting worse. Are you tracking your symptoms?

05/26/2012 07:49 AM
lymeontario
 
Posts: 104
Member

yes for me... it felt like buzzing... like little bees buzzing in my body

the tremors are only felt by me but cannot be seen to anyone else.


05/26/2012 09:20 PM
wanthealth12
wanthealth12Posts: 309
Member

yes the shaky feeling inside (i guess its a tremor)

well it happens quite strong and I swear it feels like Im rocking.....I get so scared that its the beginnings of a seizure (wich I have never had and dont wanna)

I look at my husband and say does it look like im moving (rocking) (shaky)

he said no.

sure feels like everyone could see it

jbailey---I am tracking my symptoms...hows yours comming along?

takes a while to see the light


05/27/2012 03:40 AM
bluebird331
 
Posts: 4
New Member

I have been bothered by this shaky feeling you are all describing for over a year. It started shortly after I lost hearing in one ear before I knew I had Lyme disease. I developed horrible tinnitus at the same time and eventually developed balance problems due to damage to my cranial nerve.

It is comforting to learn that I am not the only one with this. You all describe it well. It feels like my brain is shaking internally and I have also asked my husband if he could see or feel this. He says it is not visible and put his hand on my head and it felt calm, but to me it feels like everything is shaking.

I also feel a buzzing sensation in my hands and feet that makes it seem like I can feel the blood circulating through my whole nervous system.

I learned after some neurotransmitter testing that I am high in serotonin, dopamine and norepinephrine. Perhaps this is all related. MD says this is all Lyme related and can cause more anxiety.

My sensations resemble anxiety, but I believe they are a physical response to my limbic system and nervous system all messed up from Lyme.


05/27/2012 07:38 AM
evelinawill
evelinawill  
Posts: 815
Senior Member

In my case it comes and goes, probably I am too stiff when I don't have the trembling.

Now I have the trembling all over the body, all my body is quite heavy.


06/01/2012 08:29 PM
AngiS
 
Posts: 47
Member

I, too, had this unfortunate symptom before and after I was diagnosed with Lyme. It was a truly horrible feeling - when I didn't kow what was wrong with me, I honestly thought I was dying. With treatment it finally went away, but it was awful when it was happening. It felt like a cross between nerves misfiring and being on the verge of a panic attack, with waves of buzzing and vibrations just rolling through/over my body. Unless you've experienced it, it's difficult to describe...

06/01/2012 10:04 PM
jbailey
 
Posts: 292
Member

I am having this right now . So glad to hear it goes away with treatment. It is making me crazy.

06/02/2012 02:55 AM
bluebird331
 
Posts: 4
New Member

Angis, your description was so much like what I feel... "a cross between nerves misfiring and being on the verge of a panic attack".

I notice you are on rifampin. I have been on rifampin and doxy to treat for several months. I am thinking I need to move to a cyst buster.

Could you share what meds/supplements helped you? And for how long?

My LLNP seems to think that the only way I am going to get rid of these sensations is to go on IV ABX. I am not ready! Thank you so much!


06/02/2012 06:10 AM
AngiS
 
Posts: 47
Member

I actually stopped taking Rifampin for Bartonella last summer - my body just couldn't tolerate it. I was literally bed-ridden for about three weeks because I couldn't function. I was still very sick when I started it so to add that to the mix was just too much for my body to handle. I'm one of those "tough it out" types that does whatever is going to work, no matter the cost, but I just couldn't do it after about six weeks of taking it.

When I was treated for Lyme, I was on amoxicillin (I'm allergic to doxycycline), azithromycin, and tinidazole (Tindamax) and a huge amount of supplements for about eleven months. At the end, all tests were normal, even co-infection panels, and I felt pretty good.

Unfortunately, five months after Lyme treatment, I started to feel horrible with what I now know to be Bartonella symptoms. The LLMD whom I credit with saving my life had retired during my brief period of wellness, but she was able to recommend another LLMD for me to see. She's been wonderful, too, and I know that I'm fortunate to have had two intelligent and compassionate doctors.

I was positive for Lyme through IGeneX, but every Bartonella test I've ever had has been negative. I was even in a Bartonella study which was being conducted by Dr. Ed Breitschwerdt (leading Bartonella expert) and I was negative three times. But my symptoms were all pointing to Bartonella - even thought that's what I had originally, not Lyme. My VEGF came back at 1100 so that sealed the deal when combined with my symptomology (lab range is 60-650). And with treatment, my VEGF is steadily going down and I'm getting better - it's still a day-to-day thing - but better nonetheless.

I'm currently taking Avelox (quinolone-based abx - was on Levaquin, but it hurt my knees), azithromycin, and tinidazole (Tindamax). I also was on cholestyramine for the first six months of treatment. Found out last week my doc said I can begin taking the azithromycin and tinidazole M-W-F and when I get my VEGF labs back and they're contininuing to trend downward, I can cut the Avelox back to M-W-F as well. This is great news for me - yea!

Daily, I also take olive leaf extract, oil of oregano, lysine, Virastop (natural antiviral), magnesium taurate, milk thistle, Energy Multiplex, omega-3, B-12, vitamin D3, and a heavy-duty probiotic (some of these I take multiple times a day). When I was being treated for Lyme, I took all of the above, but added B-6, B complex, and pantothenic acid (all Bs for increasing nerve function and trying to regrow all of the hair I lost during my battle with Lyme!).

I'm getting towards the end of my treatment (it's been a year) and I'd say I'm at 85% - all tests but VEGF are normal. In my experience, Bartonella has been so much more difficult for me to eradicate than Lyme ever was (and I was VERY sick from Lyme). Apparently, when I was being treated for Lyme, the abx were high enough to keep the Bartonella suppressed, but when I went off of them, they took over and wreaked havoc on my body.

Good luck - let me know if you want any more info!

Post edited by: AngiS, at: 06/02/2012 06:19 AM

Post edited by: AngiS, at: 06/02/2012 06:25 AM

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