Herx in legs? Vibrate, twitch, pain? ANYONE?

Hi Everyone,

I am getting kind of desperate. I am sure you have all been there. I am feeling rather scared--hoping this is a Lyme herx--not some horrible unmentionable nerve disease which suddenly appeared...

My background: Diagnosed with Lyme and Babesia. Negative for Bart but had a weird chicken coop wire like rash which looked like Bartonella to me. Among other symptoms I have had over the last year: tremor; CONSTANT twitching of toes and calves; (you can see them moving under the skin); creaking neck; swollen tendons in big toe, feeling of heaviness in right leg; numb left side of face--comes and goes; numb left pinky--comes and goes. Tingling comes and goes. Stabbing pains in fingers, toes and healthy teeth. Etc.

So, I am mostly NEURO.

On 4 grams Amox and just SLOWLY ramped up 250mg Azithromycin per day. Within just a few days of slowly ramping up Azith, here is what happened:

Sudden, widespread muscle twitching--more than I have ever had. Even crawled from my calves up into my thighs (new).

Twitching died down a bit, but then I started getting WEIRD INNER VIBRATION feeling in my LEFT leg--where symptoms have always been pretty calm!! Now, the left leg twitches and vibrates, and last night I had throbbing pain under the foot of that leg which woke me up. Totally new to me. So my questions are:

1. Does this sound like a Lyme or Bart herx? Or a sudden appearance of some other awful neurological disease?

2. Why all this neuro activity in ONE LEG?--and in a leg that has been more calm? How can it be mostly in one leg and not both? Anyone?

2. Also, has anyone had slight a feeling of sort of unsteadiness/jerkiness when you move to pick something up, or you bend down to get something? Like it is not one completely smooth movement? Like your muscles have to start and stop to get there? (I really think this started with the Azith as well as all of the above. Wondering if it might be a mild side effect of the Azith)

I am so confused. My LLMD first said "go back to your neurologist" when I first told him all this, but when I told him it all COINCIDED with starting the Azith, he said yes, this could be a herx, so try to get up to 500mg Azith per day, and then we will add in Rifampin if your body can handle it.

I am doing no detoxing but I just ordered some Epsom salts.

I think I am at a real low point. When all these intensity started, it made me feel like, "Okay this is too intense to be Lyme. I must have ALS or MS or some awful horrible thing like that, because how could Lyme be so neurologically overwhelming?" Any thoughts would be so much appreciated. Thanks.

Hi MyLyme, your symptoms are almost identical to what I am going thorough as my symptoms are also mostly neurological. I am on 2grams of Amoxicillin and started 150mg of Rifampin about three weeks ago. I have Lyme, bartonella and EBV.

My symptoms are mainly on my right side which is where I have been impacted the most (eyes, limbs, itching, organ pain, etc) although I also get them on my left side on occasion.

The one that has me the most worried is the "inner vibration". It feels like as if there were bubbles in my blood and it gurgles. Imagine a water hose when you first turn it on. It only lasts for a few seconds. Is this the same for you? I also have the heaviness in the legs and arms. Sometimes they feel so heavy that I feel like I can't lift them. The tingling and numbness in arms and legs happens mostly when I am sitting or laying down. I had am MRI with contrast done three days ago and am waiting for my neurologist to go over the results. If everything comes back normal I am going to check with a cardiologist. I hope that the inner vibration and tingling/numbness is not heart related.

I tried azythromycin a few weeks ago and one pill gives me the worst anxiety and depression. I could not and had no incentive to get out of bed. Not even to go to the bathroom. As soon as the Azythromycin got out of my system in about three days the depression and anxiety lifted.

I thing is that I felt so good when I started Rifampin and then all of these symptoms just intensified. I used to get them now-and-then and now it is constant. Even the brain fog, disorientation, and dizzyness have intensified so tremendously.

MyLyme:

I have the majority of symptoms you describe, lots of twitching, buzzing/vibration, tingling, jerky movements. Anxiety definitely makes it worse, trust me. Try not to worry about it too much and take comfort in the fact you are definitely not alone!

I'm not treating with antibiotics so others are better off giving you advice regarding that aspect.

LC

Hi Mylyme,

So sorry you are going through all this.  When I was sick from lyme I lost the use of my legs (they were too weak to stand on and I would fall down all the time).  I also had horrible leg pains (felt like hundreds of tiny knives inside stabbing me), joint pains, hip pain, etc.  Back then I knew nothing about detoxing and when I did hear about detoxing from other members I ignored it because it didn't make sense to me.   Wow, was I wrong!   So I learned the hard way.

When lyme bacteria die they leave toxins and if those toxins stay in the body they cause all sorts of havoc including the ones you mention as well as brain fog.

If your computer can open up a pdf file, I suggest reading this article called "Lyme Toxins:  The Primary Cause of Your Symptoms"

http://www.benbrew.com/lb/lyme5.pdf

I hope this helps.  There are instructions in the Sticky Thread on Top called "New to Lyme? Start Here!" on how to detox.

Hope you feel better,

Denise

My vibrating and twitching has lessened. It is a weird experience trying to explain to others that dont deal with it.

Which is usually blamed for neuro lyme - bartonella or babesia?

I just reread some of the posts ans it looks like bart is most associated with neuro symps.

Hey Jeff,

Describe your symptoms. Some of these guys sound like they were dealing with neuro bart/lyme. The vibrating sensation is small fiber neuropathy, which can be a neuro lyme complication.

Give us your whole background, diagnosis l plus symptoms

Mylyme said...
Hi Everyone,

I am getting kind of desperate. I am sure you have all been there. I am feeling rather scared--hoping this is a Lyme herx--not some horrible unmentionable nerve disease which suddenly appeared...

My background: Diagnosed with Lyme and Babesia. Negative for Bart but had a weird chicken coop wire like rash which looked like Bartonella to me. Among other symptoms I have had over the last year: tremor; CONSTANT twitching of toes and calves; (you can see them moving under the skin); creaking neck; swollen tendons in big toe, feeling of heaviness in right leg; numb left side of face--comes and goes; numb left pinky--comes and goes. Tingling comes and goes. Stabbing pains in fingers, toes and healthy teeth. Etc.

So, I am mostly NEURO.

On 4 grams Amox and just SLOWLY ramped up 250mg Azithromycin per day. Within just a few days of slowly ramping up Azith, here is what happened:

Sudden, widespread muscle twitching--more than I have ever had. Even crawled from my calves up into my thighs (new).

Twitching died down a bit, but then I started getting WEIRD INNER VIBRATION feeling in my LEFT leg--where symptoms have always been pretty calm!! Now, the left leg twitches and vibrates, and last night I had throbbing pain under the foot of that leg which woke me up. Totally new to me. So my questions are:

1. Does this sound like a Lyme or Bart herx? Or a sudden appearance of some other awful neurological disease?

2. Why all this neuro activity in ONE LEG?--and in a leg that has been more calm? How can it be mostly in one leg and not both? Anyone?

2. Also, has anyone had slight a feeling of sort of unsteadiness/jerkiness when you move to pick something up, or you bend down to get something? Like it is not one completely smooth movement? Like your muscles have to start and stop to get there? (I really think this started with the Azith as well as all of the above. Wondering if it might be a mild side effect of the Azith)

I am so confused. My LLMD first said "go back to your neurologist" when I first told him all this, but when I told him it all COINCIDED with starting the Azith, he said yes, this could be a herx, so try to get up to 500mg Azith per day, and then we will add in Rifampin if your body can handle it.

I am doing no detoxing but I just ordered some Epsom salts.

I think I am at a real low point. When all these intensity started, it made me feel like, "Okay this is too intense to be Lyme. I must have ALS or MS or some awful horrible thing like that, because how could Lyme be so neurologically overwhelming?" Any thoughts would be so much appreciated. Thanks.[/quote
I've had exact same symptoms I can relate I thought I was dying or going mentally insane . about marks rashes I've woken up or just been standing around the house when I just notice random like scratches almost paper cut like will start burning pretty random. Also almost like rashes bt look like random scratches lines wierd shapes idk my bart test was neg bt theres different.strains and doesn't mean u don't HV it. Also these rashes/ scratch like cut marks will start burning . I always have burning feelings plus my left arm just randomly my went numb and.felt.as if something was literally crawling or slithering through it. I thought I was having a heart attack or a parasite slithering through my arm it's pretty scary

Mylyme said...
Hi Everyone,

I am getting kind of desperate. I am sure you have all been there. I am feeling rather scared--hoping this is a Lyme herx--not some horrible unmentionable nerve disease which suddenly appeared...

My background: Diagnosed with Lyme and Babesia. Negative for Bart but had a weird chicken coop wire like rash which looked like Bartonella to me. Among other symptoms I have had over the last year: tremor; CONSTANT twitching of toes and calves; (you can see them moving under the skin); creaking neck; swollen tendons in big toe, feeling of heaviness in right leg; numb left side of face--comes and goes; numb left pinky--comes and goes. Tingling comes and goes. Stabbing pains in fingers, toes and healthy teeth. Etc.

So, I am mostly NEURO.

On 4 grams Amox and just SLOWLY ramped up 250mg Azithromycin per day. Within just a few days of slowly ramping up Azith, here is what happened:

Sudden, widespread muscle twitching--more than I have ever had. Even crawled from my calves up into my thighs (new).

Twitching died down a bit, but then I started getting WEIRD INNER VIBRATION feeling in my LEFT leg--where symptoms have always been pretty calm!! Now, the left leg twitches and vibrates, and last night I had throbbing pain under the foot of that leg which woke me up. Totally new to me. So my questions are:

1. Does this sound like a Lyme or Bart herx? Or a sudden appearance of some other awful neurological disease?

2. Why all this neuro activity in ONE LEG?--and in a leg that has been more calm? How can it be mostly in one leg and not both? Anyone?

2. Also, has anyone had slight a feeling of sort of unsteadiness/jerkiness when you move to pick something up, or you bend down to get something? Like it is not one completely smooth movement? Like your muscles have to start and stop to get there? (I really think this started with the Azith as well as all of the above. Wondering if it might be a mild side effect of the Azith)

I am so confused. My LLMD first said "go back to your neurologist" when I first told him all this, but when I told him it all COINCIDED with starting the Azith, he said yes, this could be a herx, so try to get up to 500mg Azith per day, and then we will add in Rifampin if your body can handle it.

I am doing no detoxing but I just ordered some Epsom salts.

I think I am at a real low point. When all these intensity started, it made me feel like, "Okay this is too intense to be Lyme. I must have ALS or MS or some awful horrible thing like that, because how could Lyme be so neurologically overwhelming?" Any thoughts would be so much appreciated. Thanks.

Antibiotics made me even sicker like doxycycline made me vomit diarrhea dizzy low blood pressure faint sicker than a dog on my death bed. Not the antibiotic per say bt more of a.die.off herx reaction and it destroyed my gut flora. I do buhners protocol all natural herbs is the way to go tbh it's the only thing that stopped my migraines its saving my life only relief I've found and u must do tons of detox like chlorella (broken cell wall) activated charcoal epsom salt baths lemon water and u def.need TUDCA it removed mold toxins and used for gallbladder/ liver. Also NAC biofilm busters cuz all these bacterias develope biofilms after we time to protect themselves and that's y antibiotics can't break through and kill the bacteria sometimes. I've read lyme dies at like 106 degrees or something which is y ppl use saunas and such try to sweat it out