Herx? Seizure? Stroke? - Need Help!

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lkc1981
New Member


Date Joined Aug 2016
Total Posts : 9
   Posted 3/1/2017 6:27 PM (GMT -6)   
Hi everyone.

I had an extremely scary episode earlier this week and wanted to see if anyone had experienced a similar situation or had any thoughts. It was so bad that the only three things I can imagine it being were a herx, a seizure or a stroke.

For context, I've been on abx treatment for seven months for chronic neuro-lyme but have been feeling OK up until this episode. I'm currently on Ceftin (as of two weeks ago) and Mepron (for the last two months).

While laying in bed, a very sudden feeling of intense electricity came over my entire body. From there, I started to feel numb/paralyzed and flushed with heat. I started bracing myself for what was happening and felt like I couldn't move or speak or it would agitate whatever was happening beyond what I could tolerate.

As it got worse, I felt like I had to consciously breathe for myself or I would stop breathing. I felt paralyzed (the way I explained it to my wife was that if our apartment caught on fire at that moment she would have had to carry me out because I wasn't going to be able to move). One side of my mouth was dropping slightly. My nerves seemed like they were firing at 10x their normal rate making my muscles twitch and jerk constantly. My speech was slurred at times. It felt like I was slipping in and out of consciousness but never did really lose consciousness. I was fully aware of what was happening but my thinking was extremely delayed and slow.

This came in waves where at the best point, I was alert and able to communicate to my wife and let her know what was happening and how I was feeling. In these moments, the symptoms weren't unbearable. At the worst points though I truly thought my body was going to shut down and I was going to die. These waves came and went for over an hour until I finally pulled out of it.

Once it was over, I was completely exhausted and went straight to sleep. The next day I felt like I had been hit by a truck and didn't get out of bed the entire day (note: I had been feeling just fine in the days previous).

Today I went to see my LLMD neurologist and he did not think that this was a stroke or seizure (which surprised me). His POV was that this could be an allergic reaction to the abx. I asked him about a Herx and he said 'could be' and moved on to recommending that I see an allergist tomorrow to test for a reaction to the Ceftin.

Finally, my questions.... smile

Has anyone experienced or heard of similar situations that they believe are herxes? Or seizures/strokes?

Can herxes come on weeks after beginning a new abx rather than within a few days?

Has anyone experienced or heard of similar situations where a herx was 100% neurological with no flu-like feeling, pain etc?

Thanks to everyone in advance. Pretty shaken up over here as I'm scheduled to begin IV Rocephin treatment this Friday but am terrified of what that Herx could be like.

PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 3/1/2017 6:41 PM (GMT -6)   
FAST --

F stand for face: Ask the person to smile. Does one side of the face droop?
A stands for arms: Ask the person to raise both arms. Does one arm drift downward?
S stands for speech: Ask the person to repeat a simple phrase. Is their speech slurred or strange?
T stands for time: If you observe any of these signs, call 9-1-1 immediately.

Do not mess around with a stroke and think it will go away. Permanent damage can result.

I have only seen one person with a seizure and it is horrific and the caution is that they can bite their tongue. I was not prepared for what I saw at all.

Here are the signs of a seizure -- www.epilepsy.com/get-help/managing-your-epilepsy/understanding-seizures-and-emergencies/warning-signs-seizures

Whatever you had sound horrible and definitely scary!!!! I think I would have called 911 if my loved one was that bad.

It could be a herx. Did you up your meds or recently change? More herxes happen with antibiotics than with herbs says Dr. Rawls.

And one other thing in my guessing -- stress can cause all kinds of symptoms. If you are anxious about starting a new antibiotic, the underlying stress can cause all kinds of body ailments.

I'm not much help, but gosh I sure hope your doctor figures it out.
____________
When life gives you lemons, just add them to water and detox.
I look for humor and fun in as many situations as possible.

lkc1981
New Member


Date Joined Aug 2016
Total Posts : 9
   Posted 3/1/2017 6:48 PM (GMT -6)   
Thanks Pete.

I did change from Zithromax to Ceftin in the last 2.5 weeks. I think you make a good point with the stress.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33803
   Posted 3/1/2017 6:49 PM (GMT -6)   
So you added the Ceftin two weeks ago?

I'm think it put you over the edge...and it's a herx.
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 : 33803
   Posted 3/1/2017 6:50 PM (GMT -6)   
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

lkc1981
New Member


Date Joined Aug 2016
Total Posts : 9
   Posted 3/1/2017 6:53 PM (GMT -6)   
Hey Girlie. Yes, just added the Ceftin to go along with the Mepron. Just taking those two. Doxy and Zithromax were in the past.

As far as detoxing, I admit I should start doing more of that. I haven't had much issue with herxing (other than a couple of other episodes similar to the scary one earlier this week) so have been slacking there a bit. I sometimes, but not consistently, have drank lemon water, taken epsom salt baths, dry brushed and taken Milk Thistle. Maybe I should focus more on this going into the IV treatment.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 3/1/2017 6:55 PM (GMT -6)   
lkc1981 said...
Thanks Pete.

I did change from Zithromax to Ceftin in the last 2.5 weeks. I think you make a good point with the stress.


Stress is horrible. I generally fool myself and don't realize I am stressing. Kick back and relax for a bit. As Girlie said, detoxing is advised.

www.tiredoflyme.com/detox-methods.html

And, if this happens again I sure hope someone is near you and you really should call your doctor. This sounds like it was pretty powerful, whatever it was.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 3/1/2017 8:25 PM (GMT -6)   
facial paralyzes, slurred speech (quick sand mouth), zaps of electricity running the body, muscle twitching, etc.

I as well many other lymies have experienced these symptoms. The zaps of electricity is pretty freaky and it happened at night while resting as well.

If you have lyme the odds are it's lyme. But if you feel you need to see a physician to possibly rule things out then better to be safe.

But I also have/had lyme and experienced these exact same thing and read about many other people with lyme experiencing this as well.
Positive for Lyme (Igenex), Ehrlichia (Igenex), and Mycoplasma (Labcorp)

ABX Treatment: 03/2016-04/2016
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016

95% Symptom Free. Now repairing the body: Thyroid health and physical therapy

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4893
   Posted 3/1/2017 8:29 PM (GMT -6)   
Mepron depletes q10...rocephin has been good for me but do you have a penicillin allergy?...better safe than sorry ..i had a bad sulfa experience and havent been the same since ..happens with floroquinalones too

B99
Regular Member


Date Joined Sep 2016
Total Posts : 95
   Posted 3/1/2017 8:53 PM (GMT -6)   
I have read that Milk Thistle is not recommended with Mepron as it causes the liver to process and eliminate it from the body too quickly. It's fine to use dandelion tea instead.

Milk Thistle is OK with other Lyme meds as far as I know.

Both Milk Thistle and Dandelion protect the liver extremely well.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 3/1/2017 9:04 PM (GMT -6)   
Hello iKc1981,

First I want to say I'm sorry you had to experience that. It is scary and troubling.

When I first started having the Neuro symptoms, I had an extreme flush of heat first, then heavy numbness in my head, neck arms and then legs(not tingling or pins and needles numbness). Heavy numbness.

Then it was waves and waves of rolling numbness throughout my head, neck ,throat, upper chest, upper back area. It could last for 30 to 45 minutes.

I thought I was having stroke but that was always ruled out(thankfully) at the ER and then when I was under observation three times in the hospital.

My point: my face, smile,eyebrows,arms NEVER drooped. The nurses checked it all the time,(had me do stroke sign tests).

We have Lyme which can cause these weird symptoms, but you should rule out a possible Transient Ischemic Attack.
Just to be sure. A TIA can lead to a full blown stroke.

Also you asked if anyone just herxs with neuro symptoms, I do .

Take care and I wish you the best. Sincerely, Jo

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 3/1/2017 9:09 PM (GMT -6)   
facial paralyzes and bell's palsy (drooping of the face) is a hallmark lyme symptom(s). But yes rule other things out for sure.
Positive for Lyme (Igenex), Ehrlichia (Igenex), and Mycoplasma (Labcorp)

ABX Treatment: 03/2016-04/2016
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016

95% Symptom Free. Now repairing the body: Thyroid health and physical therapy

sherri217
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/25/2017 10:12 AM (GMT -6)   
I went through almost the exact same thing last night. I'm so traumatized by it, I can hardly function today or stop crying. It was definitely a herx for me, as I added a couple new detox things and it was too much for me clearly. I think you pretty much described what I went through to a T. I did everything I knew how to do to slow down/stop a herx, but it was terrifying. And I twice heard wind chimes that weren't really there. I Googled it and found that it commonly means that angels are nearby and making their presence known. My mother died suddenly about six months ago and I have often felt her presence. But that was the first time with the chimes. (I realize many of you are in a different place spiritually so might not relate to this kind of thing. But I wanted to include it any way, because it was affecting me greatly. Because I didn't know whether to be comforted by it or scared that it was my time to go.) :-(

And I guess what scared me most of all was the crazy cardiac symptoms (racing heartbeat) and the inability to breathe without forcing myself. I kept nodding off and waking up and noticing I wasn't breathing. I am very grateful to have woken up this morning, but I need to be so much more careful not to overdo it with detoxing. I'm scheduled to go to Scottsdale for NAD treatment in October, and I really believe that is going to help me alot. So I basically need to just chill until then. Any way, sorry to bore you all with this story, but what I really want to ask is how do you know the difference between a seizure and a herx? My arms and legs are certainly seizing during it.

Thanks,

Sherri

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33803
   Posted 9/25/2017 12:23 PM (GMT -6)   
Hi sherri - welcome!

So sorry that you went through that!
Do you live alone? (I hope there was someone with you)

What is NAD treatment?

You asked the difference between a seizure and a herx?

A severe herx can include a seizure.


How long have you been treating?
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
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 9/25/2017 12:42 PM (GMT -6)   
WELCOME to our forum
I sincerely hope you are doing better now. That is a very scary and intense episode to go through.
It's possible adding the ceftin could have caused the herxing. I have had herxing almost a week or so after adding new things.
Sorry about the passing of your mom, I'm glad you can find comfort from feeling her presence that is helpful and I hope it gives you a sense of security and strength when facing lyme and co.
I wish you the best of healing and please keep us updated on how you are doing. Take care,Jo

Traneboy
Regular Member


Date Joined Sep 2017
Total Posts : 96
   Posted 12/22/2017 4:40 PM (GMT -6)   
How is one even supposed to survive this hell called Lyme Disease? Why it even exists in the first place? This planet we call earth isn't habitable.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 12/23/2017 6:32 AM (GMT -6)   
Hi Traneboy,
It can be hell,but all we can do is try to keep moving forward.

keep treating and adjusting your treatment to address the worst symptoms.

Take care of yourself eating right, detoxing, less stress etc.

Acceptance is a big one with any illness... and what I mean is to accept that we cant change that we have this....but we can take control of our treatment and life and fight it.

Arm yourself with knowledge.....there are great books ,research and many here have good advice.

Most important...BELIEVE...tell your self I will get better, I am healing and give thanks to whoever or what ever you have faith in.

Take care and let the light of goodness ,peace and hope move in you.

Sincerely, Jo

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/23/2017 8:45 AM (GMT -6)   
lkc1981 maybe you had a seizure?

For Ceftin it says this:

Call your doctor at once if you have any of these serious side effects:

diarrhea that is watery or bloody;
fever, chills, body aches, flu symptoms;
chest pain, fast or pounding heartbeats;
unusual bleeding;
blood in your urine;
seizure (convulsions); <-----------

Also this person had the same as you:


/www.mdjunction.com/forums/lyme-disease-support-forums/general-support/3769743-day-2-of-ceftin-seizures-pain-etc
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