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Advice? Neuro / tremor / spasms / sleep tremor - sleep shaking?

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Posted 9/12/2018 5:09 PM (GMT 0)
Hi Everyone,

Can anyone please comment? After six years of orals (two years off in between), I have developed a tremor in my head or neck area (depends on the night), which begins as I start to fall asleep and stays during sleep. It is almost a slow or fast oscillation feeling in my head or it manifests itself as an actual muscle tremor in the head or neck. But once I wake up fully, it usually stops. Sooo confused. No neurologist has been able to help me or understand it.

And has anyone ever experienced muscles in your face pulling and tugging, twitching? Believe it or not the muscles above and around my nose have started tugging for some strange reason. It is so insane. Other recent symptoms are jiggly vision when walking or running, and eye floaters.

I started 500 Azith and 600 Rifampin for Bart, and one week later, developed strong red striae scratch-like rashes on my stomach and wrist. I am also on four grams of Amox per day.

My questions are:

1) has anyone ever experienced these? (If so, I won't feel so alone)

2) how long does it take to get rid of Bartonella if you have had it for many years?

3) since I am very clearly neuro Lyme, should I try IV

4) does IV completely disrupt your life? Can you still go to work if you have to go an an IV center every day?

THANKS SO MUCH
Posted 9/12/2018 5:23 PM (GMT 0)
Hey mylyme,

i have sooooo many of your symptoms. for the past year and a half i have:

The tuggling/spasms in the face above the nose (literally between the eyes)
the jiggly vision and eye floaters i also have and are so annoying!! Ive been praying everynight that id wake up without them...but seems to not wanna go away....

Im treating babesia currently..do you have babs?

i havent treated bartonella yet... would you say these are bartonella symptoms? maybe when i treat bart they will go away? who knows....

but you are not alone... im right there with you
Posted 9/12/2018 5:44 PM (GMT 0)
1) has anyone ever experienced these? (If so, I won't feel so alone)

2) how long does it take to get rid of Bartonella if you have had it for many years?

3) since I am very clearly neuro Lyme, should I try IV

4) does IV completely disrupt your life? Can you still go to work if you have to go an an IV center every day?


I don't have those symptoms in particular. Bartonella can take a long time - over a year.
But, you may have to treat babesia before you can effectively treat bartonella. This is what Dr. J does.

You could try IV if you have access to it. I know with Dr. J there is a criteria he uses to decide.

Re: IV disrupt your life. I don't think it does in a major way. I know some people who have Nurses come to their home to help with the IV.
Yes, you can still work with IV.


What is your LLMD saying about the IV abx?
Posted 9/13/2018 10:21 PM (GMT 0)
bumping for more views
Posted 9/14/2018 5:38 PM (GMT 0)
Iv life is not a picnic ...see lemonsandlyme on youtube and read infusing for lymies ...iv was nice for instant relief but picc are more maintenance than ports . Bart went back after 1 year with many modalities ...

My tremors stopped with bvt ,roceph and a few iv magnesium drips ....gotta get em off the nerves so they can conduct proper
Posted 9/14/2018 6:05 PM (GMT 0)
1) Face pulling - yes. Probably Lyme or Barty Bart.

2) Ask me in a few years.
Posted 9/18/2018 5:45 PM (GMT 0)
Thank you so much for your answers!!! What a rotten disease this is.

How do you know if your twitching and tremor is from Lyme/Bartonella--or it's something congenital which you are born "unlucky" with?

Still having the strangest "inner vibration" / "brain shake" / tremor feeling and actual tremors in my head and neck when falling and trying to stay asleep....
Posted 9/18/2018 6:06 PM (GMT 0)
Yes
These are sounding very familiar to me.


My questions are:

1) has anyone ever experienced these? (If so, I won't feel so alone)
Yes. Swollen head:Face twitching, buzzing, tingling knumbness,

2) how long does it take to get rid of Bartonella if you have had it for many years?
Not sure. I had 30 days wished I would have gone longer.

3) since I am very clearly neuro Lyme, should I try IV
I had 30 days of iv rochephin last year. I got Better every day, no herxing, felt good. I thought it was going to beThe silver bullet to make it all go away. But it came back and things deeper in my body. Against my doctors orders I started to ramp up all my other protocols during the time I was on my pic line. I’m glad I did it, it helped, but did not cure me. I think proper treatment is integrative and addresses many things over the course of a year or more. I’m feeling way better but I do a lot of things that most do not. Addressing from all sides is the only way imho

4) does IV completely disrupt your life? Can you still go to work if you have to go an an IV center every day?
It took a week for me to learn how to self administer my meds. Then I was able to treat myself at home. I was excited to take my medicine every day, it felt good, no herx. If you can combine with Hyperbaric chamber even better.



THANKS SO MUCH
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