Lyme and Seizures

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Justme4508
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Date Joined Sep 2012
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   Posted 1/24/2013 8:00 AM (GMT -6)   
After seeing my LLMD I was doing better , the seizures slowed up some, they never went away. I was making it three to four days without one. I haven't changed anything, and now I had a horrible one last night, and two this morning.

At this point I am not sure what to do, the regular doctors don't know what to do with me , and I don't have the money right now to see the LLMD again. I am taking my meds, eating better than I ever had, and detoxing.

My whole body feels like it's on fire today, I don't know.

I feel desperate , and I have a horrible headache.

Justme.

opugirl
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Date Joined Nov 2012
Total Posts : 3290
   Posted 1/24/2013 8:26 AM (GMT -6)   
I'm so sorry justme. I have started having muscle tremors. They did get a lot better when I went back on doxy but I still get them. It might be one of the "flares" My insides have felt on fire on/off the past 12 hours. I'm lucky I got any sleep.Keep doing what you are doing, with what you have - this is going to be one bumpy ride for the both of us I fear.
I'm very worried that once I start treatment things are going to get rough...my LLMD is 2.5 hours away.

Mystery Illness
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Date Joined Dec 2011
Total Posts : 767
   Posted 1/24/2013 9:34 AM (GMT -6)   
It sounds like it's a Lyme flare or herx. I have flares frequently and can never pinpoint a reason why. I'm not changing anything, still detoxing the same, etc., but it jus happens. It's really frustrating because I feel so helpless. It just seems so out of my control sometimes. Unfortunately, I think that this disease does significantly vary from day to day and sometimes hour to hour. Yesterday, I felt fairly well-was able to run errands. Then I started up w/ a bad flare in the middle of the night w/ burning pain through my body, feeling dizzy while laying down, tingling, burning up and then feeling cold, etc. Barely got any sleep and I'm a wreck today because of it. I didn't do anything different to cause or not cause a flare. I'm sorry the seizures are bad again. If there is any way possible, I would recommend calling your LLMD.

Traveler
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Date Joined May 2007
Total Posts : 14752
   Posted 1/24/2013 1:32 PM (GMT -6)   
Hang tight Justme! The full moon is on it's way again! It's supposed to happen on Sunday night, so it's understandable as to why you are starting to feel worse again right now. Even with the healing I've had, I still can feel the effects of the full moon on the day of and two or three days afterwards.
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/24/2013 2:24 PM (GMT -6)   
Hey Justme,

I feel horrible for you. I had seizures for 17 years! They told me it was epilepsy, meanwhile it was Lyme. I would have to say that my biggest reason for wanting to overcome the Lyme is because I never want another seizure again.

I am wondering if you can share with me what you have tried to control these seizures. I have tried numerous meds, some made things worse, others helped. My concern is that seizures can cause brain damage, and they can be very serious, even fatal. Also, do you notice that you get more seizures around a certain time of the month? Many times women get them around their period or ovulation because of the drop and spikes in their hormones. You may be able to help contain those hormones with herbs. I have a whole list of them with what happened to me. Also, do you find that you get overstimulated by light or sound? When my hormones were high, I had to stay away from sunlight because that could bring on a seizure.

How are your adrenals and thyroid? When my thyroid levels were off, that would also strike a seizure.

Do you have ehrlichea? Have you been treated for it? That co-infection can cause worse seizures than lyme. What kind of seizures do you have? Have you ever gotten a scan to test the pressure in your brain? Intracranial pressure would also give me seizures. Diamox is great for eliminating that pressure.

Also, not sleeping enough can cause a seizure.

The one time in my life the seizures stopped was when I was pregnant. It is very common that when women get pregnant, their lyme symptoms disappear. Maybe birth control pills may work. Some fool the body into believing it is pregnant.. I have known them to work for others with containing the seizures.

Sorry if I am overwhelming you with questions. I just know how difficult these seizures are having been there.. I would really love to help or at least share my knowledge.

Sincerely,
Samantha
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

Justme4508
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Date Joined Sep 2012
Total Posts : 674
   Posted 1/24/2013 4:47 PM (GMT -6)   
I was tested, and the doctors say they are not affecting my brain, but they are affected my legs. After a seizure I am very stiff , I have a hard time walking.

The sunlight makes me see colors, color seizures it was a very strange . It was new , I didn't have them like that before. As for co-infection test, I haven't had one done yet, I am hoping to get it done in a few weeks.

Where would I get one done? I am doing the Lyme test, I think it's around 475 or so , I have to pay for that test, but It's doesn't include co infections.

I have had the seizures for a while now, since I think April , and they are pretty regular, a few times a week, or up to four times a day. The doctors don't call them real seizures but I can't stop them, I have no control over them.

Sometimes I feel like water is pouring over my head, I had three MRI, nothing came up, on them. I did start taking the seizure herbals meds from Jernigans , and it's been helping some, I am not having them as much anymore. I was having them pretty much daily, now it's every few days.

I am starting to consider going on STD , I spoke to them today, and they think I could get approved. I don't know if I can get well working, I am tired all the time, sick all the time, and not sure what to do.
Positive for Lyme 09/11/2012-sick for two years+ before

Tried Doxy for three months, neproxen, valium , xanax.

Now on Japanese Knotweed, Cat's Claw, Siverian Eleuthero, Resveratrol, and Liver support
Coliloridal silver, Transfer factor senitive, Prescript-Assist pro
1 teapoon Sea Salt daily.

Lyme Seizures-Yes they are real, as real as Lyme is.(Anti-Seizure meds made them worse)

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/24/2013 7:15 PM (GMT -6)   
Stick to Igenex for an testing. As for testing co-infections, many times they are harder to get a positive result than Lyme. All of my co-infections were diagnosed without blood work. They were a clinical diagnosis based on my syptoms. Some of the symptoms are very easily recognizable to be diagnosed as a co-infection. The Igenex Lyme testing is $200 I believe. Where are you going through that you are paying $475? I strongly urge you to go with Igenex.

I am not understanding what you mean by, "I was tested, and the doctors say they are not affecting my brain, but they are affected my legs. After a seizure I am very stiff , I have a hard time walking." Are you saying that the seizures are not affecting the brain?

What exactly happens when you have a seizure? Do you lose consciousness? Do you stare at something? Do you stop breathing? Do you lose your bladder? What do the doctors call your seizures, if not seizures?

How do you feel after a seizure, mentally? Do you get angry, confused, tired? How long does it take for the feelings after a seizure to subside?

Sorry once again if I am asking a lot of questions, just trying to get a better idea of your condition so I can help.
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/24/2013 7:47 PM (GMT -6)   
Justme,

Do you find that your seizures happen more often when you are in more pain than usual?
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

Deejavu
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Date Joined Aug 2005
Total Posts : 3797
   Posted 1/24/2013 8:10 PM (GMT -6)   
Hi all,
 
From my research and asking doctors, the cause of most seizures is caused by ammonia in the body.  Ammonia is a toxin that is released after lyme bacteria die off.  
 
I'm not sure if ammonia can be blood tested.  I do know that ammonia can be muscle tested and you can even do it yourself.
 
A person can buy ammonia at any store where the cleaning products are, then find a vial (empty out and clean a perfume vial, etc.)
 
 
 
The good news is that there are supplements that bind up ammonia so your body can get rid of the ammonia and toxins. 
 
Hope this helps and please hang in there,
Denise
Well for 7 years without any symptoms ~ used Dr. Jernigan's protocol.

Our bodies are wise as they can heal themselves, all one has to do is nourish them properly. Thus it's about the Immune System mixed with Daily Detoxing, a dose of Positive Thinking, and Lowering Stress Levels.

I come back to help others for others helped me when I was sick. Pay it forward! :-)

butterflyAK
Regular Member


Date Joined Aug 2012
Total Posts : 43
   Posted 1/24/2013 8:44 PM (GMT -6)   
I am sure you already know this but do NOT have alcohol. I had 2 glasses of wine and had an episode at 1:30am Sunday morning. I had also cut way back on my clonazepam so I think it sparked it to happen. I am not sure if what I have are seizures, my EEG was normal. But my first Lyme symptom was a seizure like attack June 2012. I was just sitting there talking to a colleague and he started getting really far away, I had tunnel vision and intense epigastric pressure. I stood up right away because I knew I was getting ready to pass out (never happened in my life). Then I felt intense shock waves in my body which turned into intense burning and tingling in my arms and then rapid heartbeat started. I panicked, and thought something was really wrong like a heart attack. This lasted for 4 hours. I did not tell anyone at work, because I thought I was having a panic attack (again never had one before) and I was embarrassed. After it was over I was so tired it felt like I had ran a marathon.

I just wrote it all off as a one time panic attack. But then I kept getting them but not as severe. I would be mid-sentence and then out of no where BHAM, I couldn't talk, move, everything sounded muffled. but would last only about 30 seconds. Then after attacks kept happening my confidence went out the window, I was so afraid of when they were going to happen and I just kept getting sicker and sicker with other LD symptoms. These attacks are utterly terrifying, unrelenting, and hard to control or predict.

My LLMD is not sure what they are exactly, but I do not believe they are panic attacks. Do I think my anxiety makes them worse when they start, absolutely. But I think it is 100% a Lyme seizure or dysautonomia attack.

JustMe I am so sorry, whatever attacks I have can't even compare to your seizures. I would not feel comfortable working under those circumstances either, I barely just got back to work and I am still terrified of having an "attack". The only thing that helps me when it starts it to have some baking soda water, protein (like meat or an egg- sounds weird I know), and lots of benzos!

Hang in there, I hope that you can get them better under control. My thoughts and prayers are with you. I will be thinking about you.
Diagnosed w/ LD Sept 2012. Symptoms are: abdominal pain, heart palpitations, hand tremors, headaches, insomnia, depression, anxiety, night sweats, burning and tingling legs and arms, blurry vision, brain fog, weight loss. Positive Igenex results, CD57 score of 25, candida, high levels of mercury & lead in urine. Also diagnosed with bartonella and XMRV. Treating homeopathically w/ BW formulas.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 3797
   Posted 1/24/2013 8:58 PM (GMT -6)   
Oh, I forgot to add these articles about ammonia and seizures:
 
 
 
And there are blood tests to check for levels of ammonia though I never heard of this lab before:
 
 
Hope this helps,
Denise
Well for 7 years without any symptoms ~ used Dr. Jernigan's protocol.

Our bodies are wise as they can heal themselves, all one has to do is nourish them properly. Thus it's about the Immune System mixed with Daily Detoxing, a dose of Positive Thinking, and Lowering Stress Levels.

I come back to help others for others helped me when I was sick. Pay it forward! :-)

Justme4508
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Date Joined Sep 2012
Total Posts : 674
   Posted 1/25/2013 6:04 AM (GMT -6)   
Usually before a seizure starts I start burning in my legs bad. My body starts to shake all over , the pain is horrible, I can hear , but I can't talk usually when it happens. The doctors did a scan of my head while I was having one, and said they are not affecting my brain so they can't be real seizures. I am 7sure what I would call them then.

The only way to explain them is if you go on youtube, and type in lyme seizures, that is how my are but a little worse then those. I video taped it , and showed it to the doctors, they said they are not sure what they are, because a person with a typical seizure can't keep their eyes close like I can through mine.

The test I am suppose to pay for is a igenex inc test going to California. It's 475.00, and the doctor said if I did a co infection test it would be another 400.00 I can't afford it right now. Honestly the test is not going to prove to me I have Lyme, I know I have it, I have almost all of the symptoms of the lyme. I had a positive 23 band test last year done.

I feel it is ammonia, and I started taking medication for the seizures, the doctors rx kind made them worse , the herbal kind seem to be helping. After I have a seizure I am so weak , and my body doesn't move the way it should for a least a day.

Thank you.

Justme
Positive for Lyme 09/11/2012-sick for two years+ before

Tried Doxy for three months, neproxen, valium , xanax.

Now on Japanese Knotweed, Cat's Claw, Siverian Eleuthero, Resveratrol, and Liver support
Coliloridal silver, Transfer factor senitive, Prescript-Assist pro
1 teapoon Sea Salt daily.

Lyme Seizures-Yes they are real, as real as Lyme is.(Anti-Seizure meds made them worse)

TICKLEDPINK
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Date Joined Jul 2012
Total Posts : 911
   Posted 1/25/2013 6:23 AM (GMT -6)   
What are you taking to try and bind the toxins?

Can you smell the ammonia in your urine or sweat? ( I could at one point)

Justme4508
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Date Joined Sep 2012
Total Posts : 674
   Posted 1/25/2013 6:39 AM (GMT -6)   
I never smelled it just feel it. I am now taking the neuro antitox II , its helping some.

the lyme test the doctor wants me to take is this
COMPLETE LYME PANEL
6050 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen ( IFA),
Lyme PCR-Serum, and Lyme PCR - Whole Blood** $475.00

I did take a western blot , and a elisa test both were neg. Here is the thing I know I have lyme, I don't know if a test is going to prove it or not, but I have it. Do I need to have this test done also?

Thank you.
Positive for Lyme 09/11/2012-sick for two years+ before

Tried Doxy for three months, neproxen, valium , xanax.

Now on Japanese Knotweed, Cat's Claw, Siverian Eleuthero, Resveratrol, and Liver support
Coliloridal silver, Transfer factor senitive, Prescript-Assist pro
1 teapoon Sea Salt daily.

Lyme Seizures-Yes they are real, as real as Lyme is.(Anti-Seizure meds made them worse)

TICKLEDPINK
Veteran Member


Date Joined Jul 2012
Total Posts : 911
   Posted 1/25/2013 6:55 AM (GMT -6)   
That's a tricky one.

You could test negative again but as many of us know,that doesn't mean you haven't got Lyme.

Sounds as if he's looking for possible coinfections ,maybe?

Do you think that if you test negative,he might not be willing to treat you?

If this is not the case,why would you want to spend unnecessary money?

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3290
   Posted 1/25/2013 10:18 AM (GMT -6)   
Personally, I'm not wasting my time to get a + Lyme test. I know I have it. I do however believe that I have coinfections and I am more worried about finding out which ones of those I have rather than Lyme. In my mind, I have the + EM rash with deer tick bites documented by the ER so in my mind that is more than enough substantial evidence that I should be treated as having Lyme. Too bad idiot drs don't agree.

nan777
Regular Member


Date Joined Aug 2012
Total Posts : 343
   Posted 1/25/2013 5:04 PM (GMT -6)   
Justme: I also have ammonia, but no seizures. Dr. J said the neuro antitox is quite safe to take even up to an ounce per day..it neutralizes the ammonia. It detoxes lots of things besides ammonia, so even if ammonia is not the toxin causing the problems it should help. I would take more.

Dr. J put me on l-ornithine-aspartate specifically for ammonia. I feel good immediately when I take it. I think you could just order it online.

I think detox in the brain is key. Hang in there!

Ditto traveler on full moon and symptom flare

Just me: Can you re-think and creatively come up with some money to pay for the LLMD? If you can sell something, or ask for help from family? Or take out a loan? I have lots of loans and asked family. I hope this is not offensive, just trying to help come up with solutions! Dang medical system in this country, anyway.

Blessings and thought of wellness!
n
CFS for 17 years, diagnosed with chronic lyme 3 years ago. Hansa Clinic Oct 2012-- Now 70% well. Lymogen, Yeast-ease, Paragen, Virogen, Etheric delivery glutathione, Vit C with R-Lipoic Acid, L Ornithine aspartate, cortef, thyroid, lumbrokinase, glandulars, homeopathics. FIR sauna, footbath, acupuncture, colonics, chiroopractic, gluten/sugar/refined carb free diet. CCSVI, OSB.

Justme4508
Veteran Member


Date Joined Sep 2012
Total Posts : 674
   Posted 1/25/2013 6:18 PM (GMT -6)   
I was at my wits in today, and I told my boss I would have to go on STD, because of the seizures, and everything. A co worker said she knew of a doctor that may help. I called him today, he said he couldn't help with Lyme but knew someone who could.

I called the office not expecting anything, I told him I have what is considered a neg western blot. He said, if you are still having seizures, you still have lyme. He said he doesn't treat the disease he treats the patient. He said because I have high amount of inflamation he would start there. He said I don't go by a piece of paper the tests are not accurate. I couldn't help it , I started to cry, He said how many doctors have you seen , I said 15 or more I am not sure. He said the infectious disease doctors won't treat a patients for a disease that a paper said you don't have. I saw five infectious disease, and they told me they couldn't help me.

He said Lyme is very complicated, and we can't go by a test , we have to go by the symptoms a person has. He is going to see me in his office on Tuesday , and takes my insurance. He said he will bill my insurance using the results what I do have, epstein -barr virus, inflamation, horrible inflamation.

Now I am not saying this is going to be the one, but at least he isn't costing me 600 to tell me without a positive test he can't help me. He didn't care what the blood test said , he treats the patient not the disease.

I am hoping that he can help me, at least with the seizures, and he knew a lot about lyme. So I am going to give him a try.

justme
Positive for Lyme 09/11/2012-sick for two years+ before

Tried Doxy for three months, neproxen, valium , xanax.

Now on Japanese Knotweed, Cat's Claw, Siverian Eleuthero, Resveratrol, and Liver support
Coliloridal silver, Transfer factor senitive, Prescript-Assist pro
1 teapoon Sea Salt daily.

Lyme Seizures-Yes they are real, as real as Lyme is.(Anti-Seizure meds made them worse)

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3290
   Posted 1/25/2013 7:48 PM (GMT -6)   
Ohh justme!! What fantastic news!!!! That sounds amazing. And technically he is going to treat you for seizures and not Lyme so insurance will cover it. Wow....

Heathersdad
Veteran Member


Date Joined Nov 2012
Total Posts : 840
   Posted 1/25/2013 8:35 PM (GMT -6)   
Justme,

First of all, congratulations on finding a doctor that finally has a common sense approach to treatment- treating you and not the disease!

When I was at the Hansa Center recently there was a young man that had been diagnosed with Parkinsons Disease for over 12 years. He had a lot of severe neurological issues, and his appearance and speech was very Parkinson-like. about 2 years ago he found an LLMD and started receiving treatment for Lyme and coinfections. According to him, his condition became worse and he almost died 3 times (white light experiences).

He eventually went to the Hansa Center, and in fact was there when I was there recently. I talked to him each day that I was there. I didn't notice any odor coming from his body on the first day before treatments. However, from that point on, I noticed a strong and revolting ammonia smell coming from him. He also showed noticeable improvements each successive day.

Your sensation of "water on my head" is a classical symptom of ammonia concentrations in the brain according to Dr. J. I would continue to use the Antitox if I were you, especially since it seems to be helping. I would also employ additional techniques to attempt to remove the Ammonia. The young man certainly received energy-based treatments that facilitated his ammonia removal at the clinic. I would employ energy-based treatments such as Far Infrared Sauna and Ionic Foot Detox. Instead of placing your feet in the pan of water, I would put the pan on a table, and then place both forearms in the pan. I noticed that a lot of the patients with brain and neurological issues did the Ionic Detox both ways. Since the toxins come out of the body- first come first served- the forearms are a much closer outlet to pull/release the toxins from the brain than are the feet. Other modalities such as Chiropractic and Accupuncture may be helpful as well.

I have done extensive reading on the subject, although I don't claim to understand the issues perfectly. The brain has a blood/brain barrier that presents a barrier to both ingress-to and egress-from the brain. The Hansa Center uses various energetic frequency treatments and polarities to coax undesirable toxins from the brain and other organs.

According to Dr. J. there is a difference between a systemic burden of ammonia and a cerebral burden. I don't know whether the FIR and Ionic Detox treatments specifically address toxins in the brain, but I sense that they probably do. It would certainly be worth a try if you have access to them.

I hope that you are finally on the path to wellness. You have gone through so much!

Don
We are older parents and Heather is our only child. She became so sick and debilitated that we thought that she was going to die, and everything looked so hopeless and bleak. However, God answered our prayers, and used the healing hands of Dr. J. at the Hansa Center to more than restore the health of our precious daughter. I have a moral obligation to help others that are likewise suffering!

Post Edited (Heathersdad) : 1/25/2013 6:55:25 PM (GMT-7)


Justme4508
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Date Joined Sep 2012
Total Posts : 674
   Posted 1/25/2013 8:57 PM (GMT -6)   
I was thinking about this today, and I thought I could save up the money for the Lyme test again or I could buy a sauna . The test are not accurate, I forgot where I read it but it was like only 66 % of the time . Even with the co-infections test, there are so many different strands I don't know anyone that could afford all of the tests.

The sauna's are not that expensive, under 200.00, and the I could use the rest of the money to help with the gluten free food. I talked to my husband about it, and he agrees, the test is not important to me, I had one positive test, and two neg. I know I have lyme, I suspect with other co-infections. I have horrible pain, but my worst symptoms are the seizures, they are horrible.

I like the LLMD enough, but I did not like that he pushed his own herbals because he is a chemist as well. One of the creams he was trying to sell me was 75.00 and was like a lotion bottle. If I am spending 300 to see him, I can't afford another 5 to 6 hundred in medication.

I will be honest, since I got sick I lost my house, and hanging onto my job by a thread. I have to get better so I can return to work full-time. Plus right now I just can't afford it. I have to pay the rent so my kids have a place to sleep. Lyme has taking everything else away from me, I will not allow it to destroy my family. My sister said today, I don't know how you do it, and it was a easy answer. I have to kids, that depend on me , and my husband. Even at worst , picking myself up from the floor because a (fake ) seizure that is what the doctors call them made me fall, I never stop thinking about my kids. The love I have for them is stronger than what Lyme has done to me.

thank you
Justme

Post Edited (Justme4508) : 1/25/2013 7:02:15 PM (GMT-7)


Mystery Illness
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Date Joined Dec 2011
Total Posts : 767
   Posted 1/25/2013 11:10 PM (GMT -6)   
Just me, your post brought tears to my eyes. I too am fighting this battle for my kids. I never stop thinking about them even when I'm so sick that I can't even roll over in bed. Always thinking about them! You will get through this; you are a fighter. You will do it for you

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/25/2013 11:48 PM (GMT -6)   
Hey Justme,

I have to say, that I don't think you are having seizures. What it sounds like that you are having is a movement disorder (there are many different kinds which are very debilitating) and it is caused by a problem in the central nervous system. Signals are getting mixed up somewhere in your body. I say this because all seizures occur in the brain. When there is shaking, there is a loss of consciousness, body stops breathing, there is no oxygen entering the brain. These are called tonic-clonic seizures or grand-mal seizures. The type of seizure that doesn't lose consciousness is called a petit-mal or partial seizure, but there is a loss of time and no shaking with this.

Back to the movement disorder, there are so many of them. I would think epilepsy is easier to diagnose. Because there are so many different kinds, treating them is difficult, and with a movement disorder many anti seizure meds would make the condition worse!

They can occur for numerous reasons, infection, central nervous system dysfunction, and lesions on the spine (all of which lyme is notorious for doing).

I have forminal spinal stenosis of the c4 to the c7 because of lyme. It is a type of degenerative disk disease.

Based on my experience, the better the lyme clears up the less this occurs. Although you want to help prevent something like that so that it doesn't cause some other permanent damage. I suffered brain damage because of the seizures. And that damage caused by the seizures is not reversible, even though the seizures were.

Did you have an MRI of your spine? Did your doctor suggest anything like a movement disorder? Maybe getting an opinion from a neuro that specializes in neuromuscular disease or neurological movement disorders, or one which specializes in the spine.

I feel horrible that you have to suffer the way that you do because a doctor can't figure out what is wrong. That seems to be the story of our lives with lyme. But sometimes we do find a doctor that does help when we finally figure out which doctor to go to. Maybe a different neuro specialty may be the answer.

I am sorry if I am totally off on this. I just would like to help, especially if there is some relief to your suffering.

Sincerely,
Samantha
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!

Justme4508
Veteran Member


Date Joined Sep 2012
Total Posts : 674
   Posted 1/26/2013 9:11 AM (GMT -6)   
I agree, they may not be real seizures, as I never lose sight of what is going on around me. I am not sure if it's because of the ammonia in my brain or if it has something to do with my nerves. Lyme can play havoc on a persons nervous system.

I did have a MRI of my spine also it was neg. I do have a extremely high epstein barr , I am at 599, and I have very high inflammation in my body. The lyme has also taking away my vitamins, I am now on 50,000 mil of vitamin D a week, and 1000 mil of vitamin B a day.

If I can get the seizure like episodes to stop, I can get better, because after one hits, I am unable to walk for a day or so usually. I am going to continue to read as much as I can on Lyme , and educate myself.

I am not sure if I can post this or not, but this is what happens to me, I believe its from Bart.

http://youtu.be/TXag5YbJznQ

samjones
Regular Member


Date Joined Jan 2013
Total Posts : 355
   Posted 1/26/2013 2:38 PM (GMT -6)   
Justme,

I am so sorry that this is happening to you. This happened to one of my friends as well and the problem was actually a combination of things. She tried many different drugs, some made things better, most anti seizure meds made it worse. I have to ask her what med she had that worked. She had a movement disorder, and they too couldn't find anything on scans. Our doctor (we see the same LLDM) stated that it was due to an infected CNS and possibly even inflammation pressing down on nerves. The signals get mixed from the nerves to the muscles.
A seizure is a disease in which the neurotransmitters in the brain fire off. Its like a thunderstorm in the brain, with loss of consciousness, sometimes horrendous fits of rage afterwards where it takes several people to hold the one person down. You can not contain someone who is having a seizure because there is so much strength they have that they can tear their arm out of their socket. A person having a seizure is not breathing. There is no air entering their body or brain. This is what makes it so dangerous because a seizure lasting more than 5 minutes can leave someone permanently brain dead. Convulsing is many times part of a seizure depending on what kind of seizures someone has.

My friends shaking eventually stopped with the medication and as her lyme treatment progressed. She gets an occasional tic, although I think most late stage lyme patients do.

Did you say you have or were treated for ehrlichia? I know that can also cause terrible tremors. Sometimes I wonder if in my case it was the lyme or ehrlichia that caused my seizures, or maybe both. I think when it comes to these diseases and having a combination of them, that we will never have all the answers as to what causes what.

Do you take any vitamins or herbs that help heal or repair the nerves? Maybe that would be a route to try. Have you figured anything out that may be triggering them?

Oh, you say you have a vit B deficiency, is it B12? that can cause a lot of nerve problems too. I have to take b12 shots because my gut won't absorb it. I take it every 5 days and it made a huge difference.... Methyl b12 helps the brain and the central nervous system.
Undiagnosed lyme, bartonella, anaplasmosis, babs for 25 yrs with a 16 year old that I passed lyme and coninfections to through pregnancy. We both began treatment 1/6/11. Still treating. Daughter will be a success story hopefully in 2013!
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