New symptom hand tremor after 1 year on treatment

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Dillon's Mom
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 2/9/2018 3:26 PM (GMT -6)   
Hi all. I’m Lisa and this group helped me find a wonderful LLMD in San Diego CA after being diagnosed in January 2017 and I’m so grateful to this site. 1 year on treatment (combo of oral antibiotics, detox and herbs) and great improvement! Almost all original symptoms (and they were severe and wide-ranging) gone, except fatigue and lingering neuro pressure, but otherwise 95% improved.

I have a new anxiety-inducing symptom after 1 year, and was wondering if 1) anyone else has experienced this symptom, and 2) if anyone has had brand new symptoms after 1+ year on treatment. My left hand ONLY has started shaking inside constantly and outside sporadically. When at rest, it doesn’t move or tremble (nothing visible), but it feels like there are little electrical shocks and popping going on constantly throughout the hand - never stops. Almost like electrical impulses/buzzing. When I move my hand it visibly trembles/shakes/twitches, and I have the sensation like the pulse in that hand is really loud and thumping. This hand is very uncoordinated, making it hard to even type. Right hand unaffected. Started 2 weeks ago.

My LLMD was a little stumped yesterday – he said it is more typical to get new symptoms when OFF antibiotics (I am still on them). He said it could possibly be a co-infection Bartonella which is surfacing as the Lyme symptoms have abated, and has started me on Bartonella treatment.

Any thoughts or similar experiences friends? It’s high anxiety inducing to me – was thinking I was over the worst of it, and now this…. Appreciate your input.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 2/9/2018 3:37 PM (GMT -6)   
I did have tremors, but they happened before diagnosis and treatment...and have resolved.


It could be that your treatment has been effective for lyme, but not for bartonella and/or babesia.

What is the bart treatment? If it's pharmaceutical - Rifampin or Rifabutin is one of the more effective treatments.

It is scary to get new symptoms - especially the ones involving the nerves. Those are my worst, most troublesome symptoms.
But, you are doing well on your treatment thus far!


Are you detoxing?
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

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2860
   Posted 2/9/2018 3:46 PM (GMT -6)   
i had my worst symptom come out about 1 year into treatment.

the cause was switching my meds to go after bartonella. the meds i took (rifampin/cipro) basically woke the sleeping giant and wreaked havoc on me. before this the meds i was taking wasn't touching these bugs.

things don't necessarily move linear in terms of healing from these infections so don't be surprised about anything that pops up. i don't even bother going to the doctor anymore for stuff because its the bugs flaring up and causing issues. i wouldn't recommend that but for me i understand the situation well enough to make that determination.

so have you switched protocols lately? some other change that may of triggered it? doesn't have to be anything could be that its just coming out and you won't know why but sometimes there's a known trigger.

Dillon's Mom
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 2/9/2018 4:59 PM (GMT -6)   
I really just want to take a moment to say how wonderful this community is. You have helped me so much. It was Girlie who told me, a year ago, that I would come through and gave me hope, and helped me find my LLMD. You know the saying when you get lemons make lemonade? Well, you all are the lemonade of Lyme (the good thing) smile

So, my treatment has been tailored to my pre-existing allergies and sensitivities to many antibiotic groups. I take Zithro, Tindamax and Cefdiner. I detox max level 2x daily. Original Lyme symptoms were awful - all neuro, bad brain fog, brain pressure, joints, crushing chest pain & fatigue, random shooting pain everywhere, neck so stiff I couldnt hold my head straight, you name it. Feb-Oct 2017 on meds, by Oct all essentially resolved with residual minor fatigue and occasional head/brain pressure. So LLMD started me pulsing in October. OFF meds 10/21-11/21 for first time. Went back ON meds 11/21. So yes Rikky 1, you are right, new left hand degeneration thing started after I started pulsing late Oct, but also after I was back ON meds for 8 weeks. That's what my LLMD found puzzling, that it started after I went back on for 2 months. I should also say just before the left hand thing I had return of crushing chest pain for 2 weeks that was an original symptom. I had never been treated for any co-infection, which is why LLMD is wondering if one of those is causing Left hand thing.

I consider myself an intelligent, calm person but my anxiety is off the charts now with scary new symptom that sounds like other scary things. Girlie's right, brand new neuro symptom so scary.

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 2/9/2018 5:07 PM (GMT -6)   
I have hand tremors (more like thumb and forefinger tremor) that have come along with my other bart symptoms. They have indeed ramped up a bit worse since starting the treatment for bart (bactrim and doxy), but they were there before, too in a milder form. It sort of waxes and wanes from day to day. Like yours mine does not tremble at rest, but is triggered only by certain movements i.e. resizing the desktop of my phone screen with thumb and finger. It triggers a quivering and a sort of jerky, non-fluid motion. From my research it seems this is often attributed to bart. Most of my other symptoms cleared or were greatly reduced in the short time I was on lyme abx even though I'm sure I've been infected for years.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2860
   Posted 2/9/2018 8:11 PM (GMT -6)   
so a few 'trigger words' caught my attention. chest pain, anxiety, stiff neck, never treated for a co-infection may indicate you are dealing with babesia as well.

Dr. J in DC assumes everyone walking in the door has all 3 B's (borrelia, babesia, bartonella). he hits babesia first since his philosophy is that's usually the bug holding people back from full healing. babesia is also 20x the size of other bacteria like lyme so knock it out and the other little buggers can't hide.

note tindamax is an anti-parasitical so it will hit babesia but usually not strong enough to kill it all. it may keep it in check somewhat depending on your unique profile but when you stop it'll come out of hiding and sometimes worse than before.

your LLMD shouldn't be puzzled he should treat you for babesia 'just in case'. mepron or malarone paired with zithromax or better to use bactrim is a solid combo to hit it. bactrim will also hit bartonella.

i would talk to him about exploring that route.

oh and don't call me a lemon! lol

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 2/9/2018 8:30 PM (GMT -6)   
Yes electrical sensations (nerves) happens with lyme. Tremors definitely. I remember a time when I couldn't even hold a glass of water without shaking it everywhere.

I totally understand about it being "anxiety induced", it definitely plays a role. I remember in the beginning of lyme when my anxiety was beyond through the roof and I would get full body buzzing and zap, like a bolt of lighting struck on the top of my head and ran all the way down to my toes.

I'm happy to hear you have reached about 90% recovered.

What my experience has been with reaching around 90% recovered is every few months a single symptom will pop up, often times a symptom I haven't experience in a really long time. I'll experience a mild version of it for like a week. Then it goes away and then I"m symptom free for a while until randomly another oldie classic lyme symptoms rears it's head a little.

My point is you may go another year or so of this. A symptom here and symptom there that may randomly pop up and you have put down, even though you are feeling almost completely recovered.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Dillon's Mom
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 2/9/2018 10:17 PM (GMT -6)   
Thank you friends. Your posts are so helpful, informative and reassuring. I'm really relieved to hear that others have similar tremor/electrical experience with lyme/coinfection (not glad we have it, just relieved I'm not alone). I'd been feeling "well" for several months on meds and thought I was "cured" - ha. Then the new one weird tremoring twitching hand with 24/7 internal electrical jolting inside spiraled me back down into anxiety hell (you know the place - where you imagine the worst new disease possible). I will take your collective experience and advice and not be surprised by anything and everything moving forward in this journey to health. I am regrouping and taking your recommendations about coinfections to my LLMD, and I'll get started on it right away. And I will stay active in case I can be of help to others they way you have to me today. Thank you.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 2/9/2018 10:50 PM (GMT -6)   
Dillon's Mom said...
I really just want to take a moment to say how wonderful this community is. You have helped me so much. It was Girlie who told me, a year ago, that I would come through and gave me hope, and helped me find my LLMD. You know the saying when you get lemons make lemonade? Well, you all are the lemonade of Lyme (the good thing) smile

So, my treatment has been tailored to my pre-existing allergies and sensitivities to many antibiotic groups. I take Zithro, Tindamax and Cefdiner. I detox max level 2x daily. Original Lyme symptoms were awful - all neuro, bad brain fog, brain pressure, joints, crushing chest pain & fatigue, random shooting pain everywhere, neck so stiff I couldnt hold my head straight, you name it. Feb-Oct 2017 on meds, by Oct all essentially resolved with residual minor fatigue and occasional head/brain pressure. So LLMD started me pulsing in October. OFF meds 10/21-11/21 for first time. Went back ON meds 11/21. So yes Rikky 1, you are right, new left hand degeneration thing started after I started pulsing late Oct, but also after I was back ON meds for 8 weeks. That's what my LLMD found puzzling, that it started after I went back on for 2 months. I should also say just before the left hand thing I had return of crushing chest pain for 2 weeks that was an original symptom. I had never been treated for any co-infection, which is why LLMD is wondering if one of those is causing Left hand thing.

I consider myself an intelligent, calm person but my anxiety is off the charts now with scary new symptom that sounds like other scary things. Girlie's right, brand new neuro symptom so scary.


I’m so happy to hear that we have helped you here. That is THE best compliment I could get! We really are here to provide support - and I, too was helped when I came here a few years ago - scared and lost.


So try not to worry (I know - easier said than done) too much about this new symptom. You have a plan in place to discuss with your LLMD.
Will you let us know how that goes?
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

Dillon's Mom
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 2/11/2018 4:10 PM (GMT -6)   
I will indeed followup here after my next LLMD appointment smile One unnerving (pardon the pun) change since my post 2 days ago on the 9th thought I'd ask about - in just those 2 days my left hand (fingers/thumb) has started trembling/shaking when totally at rest. When I posted 2 days ago it was only shaking during use. Is that troubling - that resting finger trembling on one hand? Or can I still reasonably attribute this to lyme/coinfection and not something else? I think lots of us have shaking hand or hands, but has anyone had shaking in one hand when it's totally at rest?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 2/11/2018 4:54 PM (GMT -6)   
Dillon's Mom said...
I will indeed followup here after my next LLMD appointment smile One unnerving (pardon the pun) change since my post 2 days ago on the 9th thought I'd ask about - in just those 2 days my left hand (fingers/thumb) has started trembling/shaking when totally at rest. When I posted 2 days ago it was only shaking during use. Is that troubling - that resting finger trembling on one hand? Or can I still reasonably attribute this to lyme/coinfection and not something else? I think lots of us have shaking hand or hands, but has anyone had shaking in one hand when it's totally at rest?


When I had tremors (legs and left hand) - my legs were only on use (driving - trying to hold brake pedal down was when I noticed it) BUT my left hand was at rest.

I think it means our nervous system is affected...could be CNS or PNS.


BTW - mine has gone with treatment.
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 2/11/2018 6:09 PM (GMT -6)   
Girlie said...
Dillon's Mom said...
I will indeed followup here after my next LLMD appointment smile One unnerving (pardon the pun) change since my post 2 days ago on the 9th thought I'd ask about - in just those 2 days my left hand (fingers/thumb) has started trembling/shaking when totally at rest. When I posted 2 days ago it was only shaking during use. Is that troubling - that resting finger trembling on one hand? Or can I still reasonably attribute this to lyme/coinfection and not something else? I think lots of us have shaking hand or hands, but has anyone had shaking in one hand when it's totally at rest?


When I had tremors (legs and left hand) - my legs were only on use (driving - trying to hold brake pedal down was when I noticed it) BUT my left hand was at rest.

I think it means our nervous system is affected...could be CNS or PNS.


BTW - mine has gone with treatment.


After I relapsed and my neuro/nerve symptoms were at it's worse I also had this "brake pedal" when driving problem. When gently braking and using some finesse it would start shaking and/or felt very weak.

Then I learned that a healthy level of Acethycholine is responsible for the communication that makes muscles contract.

With a lack of ACE due to lyme the nerve signaling and communication is disrupted causing a haywire in proper muscle contraction.

For me this was the issue, for when I supplemented for ACE in my neuro protocol this issue went away.

Perhaps this could be the issue for Dillon's mom as well.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Lightlife
Regular Member


Date Joined Jan 2017
Total Posts : 185
   Posted 2/11/2018 9:53 PM (GMT -6)   
I definitely had resting hand , fingers/ thumb , twitching and trembling...went away. Will occasionally still twitch if flaring . I've had it for extended periods of times- driving me bonkers or just a short few seconds...
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