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Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/13/2017 5:27 PM (GMT -7)   
I'm sure this question has been asked here before but just curious.

Chronic neuro late stage Lyme. I've been getting tremors (Mostly hands and mostly when I go to hold or grab something) been waking up with them in the morning sometimes as well.

This has has been happening consistently to varying degrees since starting abx. I want to say I first noticed it a few days into treatment. Thinking back now, I did get shaky hands occasionally before even diagnosed along with the brain fog and disassociation. Thought it was all anxiety for a long time. Now I know what was causing the anxiety!

When I saw llmd last week I told him this started regularly after starting treatment. He mentioned something about it meaning it's killing some of the infection . So basically it's a herx reaction?

Is this likely to go away in time? mad

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/13/2017 5:55 PM (GMT -7)   
Yes, it could be a herx reaction.


I had tremors - hands really bad.

At one point my legs were shaking as well - noticed it when I was driving and trying to keep my foot on the brake pedal...I had to stop driving for awhile.


Mine resolved with treatment, yours' should too.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1221
   Posted 11/13/2017 5:57 PM (GMT -7)   
It could be herxing. You could take a binder and see if the herxing/symptom subsides, but if it continues on a regular basis I would talk to llmd about targeting that specific symptom.

When I herx, I have an increase of vibrations/tremors only it is in my head/neck and upper chest.

Sida acuta is recommended to help with tremors per Buhner. But for some people to much can make symptoms worse ,so you need to start slow and low dose with it to see how it is.

Herxing can cause increase in symptoms so I would also up the detoxing.

gfields
Veteran Member


Date Joined Oct 2015
Total Posts : 867
   Posted 11/13/2017 6:31 PM (GMT -7)   
I was just mentioning to Girlie that I had pretty severe hand tremors. It really embarresses me at work. It was steadily getting worse, and then I remembered what Buhner said about sida acuta. I have been taking some over the past couple days and the severity has really been reduced to a noticeable level. It's worth a shot.

I think I may try to grow some over the winter. Apparently it's a small bush. I ordered some seeds from Belize.

Mergerl, from your description, you sound like you have a similar severity level of lyme to me. Do you have to work currently? Work and stress increase symptoms. If you can get laid off and collect unemployment for 6 months and go on a solid treatment regime, that might be good. Cowden protocol herbs really help, and you might want to try intramuscular rocephin. I never tried the IV, but that might be more effective, but also more $$.

If you get brain pressure, you can try ginger root extract. It's a very powerful anti-inflammatory. I notice a difference right away after taking two pills. It will create a warm burning sensation in your stomach for about 15 minutes, but should relieve head pressure

Post Edited (gfields) : 11/13/2017 6:37:58 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/13/2017 7:21 PM (GMT -7)   
I'm thinking of giving sida acuta a try again - even though I don't have the tremors anymore, it may help my other nerve symptoms - shivers and vibrations/buzzing
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/14/2017 1:16 PM (GMT -7)   
goshawk said...
It could be herxing. You could take a binder and see if the herxing/symptom subsides, but if it continues on a regular basis I would talk to llmd about targeting that specific symptom.

When I herx, I have an increase of vibrations/tremors only it is in my head/neck and upper chest.

Sida acuta is recommended to help with tremors per Buhner. But for some people to much can make symptoms worse ,so you need to start slow and low dose with it to see how it is.

Herxing can cause increase in symptoms so I would also up the detoxing.



Thanks smile

I might give the sida acuta a shot then. When I told my llmd he had me hold out my hands to see if they shook. Actually wasn't as bad in his office ( of course) but still had it. That's when he said well, we know we're killing some of them then. Or something like that. Then he had me back off doxy for a week. Not sure if that's the reason or not.I'm just trying to follow and do what he says for now I guess.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/14/2017 1:21 PM (GMT -7)   
Girlie said...
Yes, it could be a herx reaction.


I had tremors - hands really bad.

At one point my legs were shaking as well - noticed it when I was driving and trying to keep my foot on the brake pedal...I had to stop driving for awhile.


Mine resolved with treatment, yours' should too.



Thanks Girlie,


I hope your right. Today they aren't as bad but then again, my brain fog and other symptoms are. Eveything just keeps rotating around.

I do notice some weakness and shaking in my legs too but only if I'm walking down stairs. Otherwise I don't notice that as much.

My stomach is really angry lately too. Boy, this is all so much fun! sadcry

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/14/2017 1:35 PM (GMT -7)   
gfields said...
I was just mentioning to Girlie that I had pretty severe hand tremors. It really embarresses me at work. It was steadily getting worse, and then I remembered what Buhner said about sida acuta. I have been taking some over the past couple days and the severity has really been reduced to a noticeable level. It's worth a shot.

I think I may try to grow some over the winter. Apparently it's a small bush. I ordered some seeds from Belize.

Mergerl, from your description, you sound like you have a similar severity level of lyme to me. Do you have to work currently? Work and stress increase symptoms. If you can get laid off and collect unemployment for 6 months and go on a solid treatment regime, that might be good. Cowden protocol herbs really help, and you might want to try intramuscular rocephin. I never tried the IV, but that might be more effective, but also more $$.

If you get brain pressure, you can try ginger root extract. It's a very powerful anti-inflammatory. I notice a difference right away after taking two pills. It will create a warm burning sensation in your stomach for about 15 minutes, but should relieve head pressure




Thanks gfields,


No, not working currently. I had to stop over 6 years ago when I became physically debilitated with pain and chronic migraines. Long story but ended up having to have surgery on my Thoracic Outlet, not knowing at the time that I had Lyme. For many years now. The surgery tipped me over the edge and it's been a long ride down hill ever since then and just finding out why now.

So yeah, I've had very severe chronic neuro lyme for years. Never knew that was what it was as I was diagnosed with TOS, Trigem neuralgia, occipital neuralgia, chronic migraine, fibro, etc. I was only 33 at the time. I still don't know if the lyme cause the severity of the TOS. It was blamed on compression from a cervical rib but I do know it really never healed the way it should have because of the lyme.

Now in the past year it apparently moved to my brain, stomach and CNS. I'm sure it's been working it's way there for much longer then that. I was REALLY hoping to go back to work before I realized something was very wrong besides the pain. I don't know how I could have but the desire has been there all along. God knows when I'll be able to work again if ever. I can only hope and pray. It's been over 6 years now. Over 13 with Lyme. ( That I know of)

I'll also take a look at the ginger root extract. Maybe that would help my GI as well? Trying to learn everyday but my brain doesn't seem to keep up.

Thanks again.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/14/2017 1:42 PM (GMT -7)   
goshawk said...
It could be herxing. You could take a binder and see if the herxing/symptom subsides, but if it continues on a regular basis I would talk to llmd about targeting that specific symptom.

When I herx, I have an increase of vibrations/tremors only it is in my head/neck and upper chest.

Sida acuta is recommended to help with tremors per Buhner. But for some people to much can make symptoms worse ,so you need to start slow and low dose with it to see how it is.

Herxing can cause increase in symptoms so I would also up the detoxing.


Thank you smile


I'm actually trying a new binder now. Modified citrus pechtin. Before that I was taking charcoal but not everyday. I'm just trying out the citrus pechtin now slowly with once a day and then will increase to twice. I'll see if that makes any difference.

I'll definitely mention it to my llmd again next time if It's still happening. I'm trying to increase detoxing but finding that seems to be a full time in and of itself lately. I run out of lemons so quickly then can't get to the store. Plus my bank account is draining faster everyday. Basically living check to check now and I order new herbs and supps everyday.

Thanks for the advice and suggestions smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/14/2017 4:36 PM (GMT -7)   
Mergirl - I was originally diagnosed by my chiropractor as TOS.

But - I was always skeptical because I never had issues at all until that one day when I went to the ER in so much pain. I would have thought I'd have issues throughout my adult years if I had TOS...or at least an 'incident'.

Did they remove your top rib?

Were your symptoms mainly on one side up your upper body? Did they resolve somewhat after the surgery?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Kct
Regular Member


Date Joined May 2016
Total Posts : 109
   Posted 11/14/2017 5:23 PM (GMT -7)   
Herx is likely . I suggest more detoxing and Burrascano's neuroLyme supplements. It has helped my brain fog and memory.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/15/2017 6:41 AM (GMT -7)   
Girlie said...
Mergirl - I was originally diagnosed by my chiropractor as TOS.

But - I was always skeptical because I never had issues at all until that one day when I went to the ER in so much pain. I would have thought I'd have issues throughout my adult years if I had TOS...or at least an 'incident'.

Did they remove your top rib?

Were your symptoms mainly on one side up your upper body? Did they resolve somewhat after the surgery?



I did have my left 1St rib removed 6 years ago. Nice 2 inch scar above my clavicle to prove it. That was another thing it took me years to get a diagnosis for and by the time I did, I was completely debilitated. It got so bad that the rib literally was hindering the movement of my neck to the left. Just could not turn my head.migraines and facial pain shoulder and arm pain 24/7. That's what put me out of work and stopped everything

Now this is really confusing and I know I'll probably never have an answer for this. I know I already had Lyme when I had the surgery. I had been told for years that I didn't have it. I went to over 12 neuros in my state who couldn't tell me what was going on and why I had so much pain. I could literally feel the bone bearing down on the blood vessels and nerves. There's different kinds of TOS. I had the neuro kind. Now I have neuro lyme too!

I started getting neck and shoulder tension and tightness and the severe headaches in my teens but it was more of an occasional thing. Shoulders were always tight. But as I got older it got worse and worse. But still didn't impact my life majorly until I was around 30. By that time I had already gotten sick the first time with Lyme or clinically diagnosed. And unbeknownst to me, not treated properly or long enough and told it was gone when I felt better.

I have no idea if the TOS was really Lyme or caused by it or maybe some of the neuro symptoms were Lyme and I had TOS as well. No idea. I thought the nightmare would be over when I had the surgery. I was given a year recovery time, had to go out of state for the surgery too. But in that year was when I realiZed the pain wasn't getting much better. Still had neck tightness and pain, eye and jaw pain, etc. Everything that I had blamed on the tos. And my knees started hurting. All hell broke lose pretty much .

The surgery helped my range of motion. Once the rib was gone I could turn my head again but there was so much pain in that area and cramps in my neck. I was so young and had a good surgeon, one of the best for it and couldn't figure out why I wasn't healing.

So if it was Lyme that means I've had it much earlier then I think. But I didn't actually get sick with the meningitis symptoms till my mid 20s and diagnosed the first time then.

In the years since the surgery I've been around and around to pain specialist, rheumos, neuros, chiros, etc. Not one said anything about Lyme or ask and I didn't even make the connection myself.

I know now some of the pain after the surgery that first few years was Lyme. Llmd told me it will attack weakened nerves and tissues and it did. I'm actually feeling a little bit better in that area now for the first time since. And when I started abx I think I got a herx reaction in that area. Cramping and pain came back.

What was the pain like that sent you to the ER? Before I was diagnosed with TOS I was in there at least a couple tines a month and they could never ever figure out what was going on. I kept telling them if felt like a bone was pinching me or that my clavicle was broken but I knew it wasn't.

Sorry for the length. If I ever make it through this maybe I'll write a book someday of my medical misadventures. Lol

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 72
   Posted 11/15/2017 7:44 AM (GMT -7)   
Kct said...
Herx is likely . I suggest more detoxing and Burrascano's neuroLyme supplements. It has helped my brain fog and memory.




Kct,


Thanks. Ill definitely look into those as well.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3852
   Posted 11/15/2017 8:04 AM (GMT -7)   
TOS? Hu?

Acronyms arent my thing.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/15/2017 10:16 AM (GMT -7)   
astroman said...
TOS? Hu?

Acronyms arent my thing.


TOS = Thoracic Outlet Syndrome.

What's the context of Hu? I quickly scrolled through the comments and can't find it...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27364
   Posted 11/15/2017 10:26 AM (GMT -7)   
"What was the pain like that sent you to the ER? Before I was diagnosed with TOS I was in there at least a couple tines a month and they could never ever figure out what was going on. I kept telling them if felt like a bone was pinching me or that my clavicle was broken but I knew it wasn't. "

A few days prior to the ER visit, I got some tingling around the left shoulder blade area. It was a very busy work week. I thought it was related to sitting at the computer for 8 hours and not taking my breaks. (Although I never had this happen before)

Then on Saturday, I fell asleep on the couch...and woke up a couple hours later in excruciating pain. From my left shoulder blade up the left side of my neck to my head. Pain level a 10. And my left arm was limp - no feeling, couldn't even lift it.

Went to the ER, and they gave me a shot of some strong pain killer and sent me home with T3's.
They barely took the edge off the pain.
For the next couple of months, I couldn't sit....without pain. I had to either stand or lie down.

The chiro said it was TOS. My Dr. didn't agree - she felt it was a pinched nerve coming from my Cervical spine.

It slowly got better - and by August, I was finally back to work. But, I had been ignoring other symptoms: A lump in my throat, weight loss, very weak left arm and loss of ROM, trouble sleeping (waking up every 2 hours in a panic), poor digestion, tremors.

Then one day after work, I was laying on the couch...and I got internal vibrations in my upper body.
A continued to work...for a few more days, but then anxiety and depression started.

That was September, 2013. haven't been back to work since.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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