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Avatar universal

How common are seizures with lyme

Hi everyone, I was just kinda wondering how many of you have been dx'd with seizure disorder, or if you know how common it is to acquire a seizure disorder?

I did not have seizures as a child and didn't know I even had a seizure disorder until 2 or 3 years ago. Mine are considered simple partial seizures, so I am not unconscience during them.

12 Responses
Avatar universal
What are the symptoms you have?
1376367 tn?1319230027
Hi, I've been surfing and found this.  I gotta tell you amongst everything that I wrote,  while I was going through the detoxing I too had what I called seizures as well.  Again I suffered in silence and my husband watched and held my hand sometimes as it happened.  Mine too were where I was never unconscious and my husband also said that he didn't think they were seizures.  I went to our doctors here our regular GP and he witnessed one and he put me on Atenolon which was a beta blocker and it worked however on the lowest dose  cut in half I felt absolutely awful and from this drug I had bad headache pain almost migraine like.  Now these slowly faded off as my treatment continued.  This damn thing is multi-systemic, meaning it attacks all things in the body and no one when and where.  The gut is important to address, as everything we need in order to survive goes into our stomach and intestines so these need to be healthy and looked after as well as the liver to remove toxins.  I just wanted to let you know I too had these awful symptoms and now because of all the supplements to support my body and detoxing this awful stuff, my immune system can fight it off, at least for now.  Remember, I`m still in treatment and don`t know what`s around the corner for myself as well.  Putting in the right stuff into our bodies is always the right thing to do.  Take Care.
1376367 tn?1319230027
One more thing about the drug my doc put me on it`s spelt wrong.  It`s Mylan- Atenolol  25mg. dose.  I tried it for only one day and then stopped it cause of the damn side effects.  For me,  I felt the side effects were as bad as what the feeling of seizures from detoxing were like.  I started with my legs feeling some pain then of course would start to jiggle and then it just travelled upwards until it hit my head.  This is where it felt like I had ticks.  My neck would twitch and my hands and arms had tremors and I would then become so emotional that I would cry cause of all this uncontrolable sh-- that was happening.  It would last sometimes anywhere from 30 - 45 mins.  The thing that I noticed was that it always happened right after or started during the start of a meal.  Some mornings I would just get my supplements into me and the vitamin one would start this procedure up, however if it was injection day,  I would try to contain my self and work myself up to draw up the injection and within 20 mins.  I felt better from putting in the glutathione needle.  This is what happened for me.
1094370 tn?1317138425
Hi Pam,

I don't know anything about seizures with lyme.  I have not had any seizures.  Like everyone says though, everyone's body is different and it seems everyone experiences lyme differently.

Avatar universal
Hi everyone,, Thank you all for your reply. I did not have a good day today. This part is alittle off topic but my grandfather just passed away this morning and I have been having a difficult time. I miss him so much already.

I was diagnosed with simple partial seizures 3 years ago. The first neuro. that I had gone to see, told me I had a TIA, because I had slurred speech for a week. 11 months later, I began to slur my speech and this time it lasted for two weeks and I was sent home to (drink more water) that was my answer. Sooo,,, I decided to fire this doc. and move onto another one.

I went through another round of tests, and another EEG, (which at this point it was 3 EEG's ) all abnormal. He confirmed that I was having a misfiring of my brain that was getting stuck for a week. He dx'd simple partial seizures and said I have Epilepsy, because the cause was unknown.

I have asked over and over again how someone could have a seizure that lasts for a week or more and it not be considered a medical emergency?

I have had alot of thumb twitching that would come and go throughout the day and that had gone on for 3 months, and then, everynow and then, my thumb would twitch and then stop and then start again, ,, very strange.

I have also had when I have gotten lost in a public bathroom and couldn't find my way out. It was embarrassing and funny at the same time, but also , alarming... how do you get lost in a bathroom, I couldn't find the door I came in from. Very disoriented.. seizure?? I don't know,

I had a night when I was watching  a movie with my husband, it had a lot of flashing lights and all of a sudden my vision was tunneling and blacking out around the peripheral (sp?) this went on for about 30 seconds.

The last thing is,,,, nystagmus... could this be considered seizure activity? Every now and then, my vision gets jumpy and my eye jitters back and forth. It usually happens when I am focusing hard on something or when I am really tired.  I tried to ask questions over on the epilepsy forum, but there is not much activity  on there, so , I understand if no  one can give me any insight, I thought it was worth a shot, especially if any one else has been dx'd with seizures along with having lyme.

Thanks again,
Avatar universal
Very sorry to hear about your grandfather.  I still miss mine 40 years later.

About your symptoms, I'm not (as you know) medically trained, but rather than just go with the epilepsy diagnosis, I'd let an LLMD take a fresh look at all your symptoms.  NonLLMDs tend to see slices of symptoms and not look at the patient as a whole.

Seizures are the body's reaction to something out of whack, and the first question I'd want answered is whether what's out of whack is an infection like Lyme.  Sure, it could be epilepsy of unknown origin, but going back to square one is what I would do.  Clean slate, no assumptions about what's relevant or not to a diagnosis.  I have read virtually everything you list above as being found sometimes in a Lyme infection.

Twitching is quite common in Lyme, due to the bacteria using up magnesium in your body.  You might try supplementing and see if it helps, but really an LLMD should make the determination.

Hang in there --
1376367 tn?1319230027
Also, very sorry to hear about your grandfather and the emotional stress from this alone can conjour up syptoms.  The twitching as well could very well be triggered from an emotional standpoint as well as lack of certain supplements and magnesium and malic acid are two very important ones. I would start fresh and see if you have a yeast overgrowth in the gut first as most patients with either Fibro or Lyme usually have a huge imbalance of Flora and this needs to be addressed first.  If your body is full of toxins that are not being released this tends to back up and affect many other organisms of the body.  Cellular support is also needed and a doctor will be able to tell you this after running blood work on you.  If you have a lot of toxins in your body it will be so much more sensitive to changes that are made and this needs to be done at a very slow manner as well as support the body with all the supplements necessary so as not to shock your whole entire system.  When the body has so much to deal with, it's simply too much and this is how I was treated, with a slow and steady approach and it took 6 - 8 months.  In the first 6 months I was told to expect a roller coaster ride and believe me it was.  The hormones also need to be addressed and brought into balance as well.  Mine were not even looked at until I had been on hormonal replacements for at least 4 months after beginning treatment.  Now,  I can honestly say,  I can think much clearer, I have more energy, brain fog completely gone and the best of all is the pain has left and I haven't used any pain medication since Sept. 14th.  I was told about Traumeel and have used this instead and it works.  My pain was inflammation from detoxing and this is still going on.  The amount of pain is minimal now that I am so much better than when I first began, but I still have to do my injections, which by the way I have to get on to one now.  My blessings to you and heart felt sympathy for your loss and also for what you a dealing with personally.  Take ACTION to help yourself out of this and you'll get there like I have so far.  I'm not done yet.  GOD BLESS
Avatar universal
Thanks everybody so much!! I have been thinking about something my doc. said to me one day  to give me blood results over the phone, she said, " you have very high antibodies". ... Honestly, I was like "really, ok"

I think I just got so used to hearing that something was abnormal or showing something that I didn't pay much attention to it.  Could this be an indication, or not really? lol, Just doing my research through you guys, cause you are all so smart and helpful :)

Next couple of days are going to be very very draining, wake for grandpa on wed, thurs. funeral and burial, and friday, LLMD... 4 1/2 hr. drive!!!!!

I am tired already.
Avatar universal
I always get copies of all test results before I leave the appointment, so that I can muse over them later.  My LLMD always had a copy for me as we discussed the results, and I am now careful to get copies from all docs of all test results and keep them in a binder at home.  I have tried with some docs to get copies later of older test results, and often don't get everything or get the brush off.  Be persistent, because these are YOUR test results:  you paid for them, they are about you, and you deserve a copy!

Take care.
Avatar universal
Hi Jackie, I picked up my lab work yesterday and looked over them. Every single band is negative on the Western Blot. I know now that these tests are not conclusive, so I am still plowing ahead. lol,,,,
Would you believe I just found another tick, this one was small, and I can't even believe that I saw it, (my vision is so messed up) I just let my dogs back inside and my one dog jumped up on me and lo and behold a tick fell right off of him. He is on frontline, so I wonder if the frontline is working and the tick will not attach. The big scare now is.,,, if it won't attach to the dog, and it is hanging around until it finds something or someone else, we are next!!

I swear to God this is freaking me right out!! All of my life, I have never even seen a tick, but in this past year I have seen 7!!! Maybe because I am more aware of them?? I am looking more closely now, and even my husband is seeing the "BIG PICTURE" now. He is going to go in our yard and clear all of the brush and trees that hang over our fence,,,, I am so thankful that he is freaked out too, because now I don't look like a lunatic alone!! LOL

Thanks Jackie,
Take care,
Avatar universal
The ticks are everywhere, and aren't going away.  That's why the medical community needs to step up and figure out how to effectively treat the diseases the ticks carry ....  waiting ... waiting .... !

About the tests, they are lousy, not very accurate.  Esp if you have been infected for a while, bec. the immune system stops reacting to the infection after a while, and it's the immune system response that the W Blot is checking for.  LLMDs know that; nonLLMDs ... don't.

Hang in there -- knowledge is power.
Avatar universal
Pam, sorry to hear of your grandfathers passing!  When my mom died it was very hard on me as I was the last child and kinda spoined by her.

  I had eye twitches and facial tics (not ticks! lol)

  My fasticulations were on my back left calf muscle predominently.  Drove me nuts.  And as Jackie says, Mg works wonders.
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