posted
Anybody out there suffering from seizures caused by Lyme disease?
I was diagnosed in the fall with Lyme disease.
I think that I have had Lyme for over 3 years. One of my symptoms is Seizures brought on by certain foods.
They are weird seizures that I remain conscious during.
They always occur as I am waking up and I know they are about to happen because I get a severe twinge of nausea right before they occur and severe pressure in my head that travels from the back of the head to the front. They are horrible.
If I get out of bed and run they hit my heart instead of my head which makes me feel like I'm having a heart attack.
When it hits my head it feels like an ice pick being slammed into my brain over and over again, splitting my brain in half.
After wards, it feels like the left side of my brain is cut off and numb. I can't speak, I can't walk, I can't stand, and I have no muscle control.
They are always followed by several hours of convulsions and tremors, memory loss, bladder spasms and nausea. And overwhelming thirst.
All blood tests come back fine - except for the Lyme. Low to high fever that spikes with each seizure. Horrible headaches.
The doctors have suggested pseudo seizures, panic attacks, and anxiety.
They always give me ativan or some other anti-anxiety pill which usually does the opposite for me rather than give any relief or help.
Any help on how to relieve this. I was getting better but just recently had a 150% relapse.
They put me on the Doxycycl once again and they're sending me to the CDC, if they can't help I'm about to give up. This is torture
If anyone has had these symptoms, what helped?
[ 08-03-2009, 02:48 PM: Message edited by: chelas ]
Posts: 3 | From ephrata pa | Registered: Aug 2009
| IP: Logged |
posted
the obvious neuro symptoms that follow and fever would not seem like anxiety is the issue??
what seizure testing has been done? 3 day brain wave study? sleep study? sleep deprived eeg?
not sure about the seizure going to heart not head. i understand what you mean, but trying to think of a clinical reason....only neuro mis-firing comes to mind...
MRI/CT of brain??
would find best neruo in the area, and another for 2nd opinion.,
LLMD input? just my thoughts
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
| IP: Logged |
posted
My biggest problem is no medical insurance. I've applied for assistance but I have to wait 8 to 10 weeks. I'm afraid I won't live that long.
EEG came back normal. My neurologist wants to do a study that will involve strapping an EEG to me for several days, but the cost is in the thousands.
Never had an MRI.
Cat scans appear normal.
I spent a year blowing my money away with gastro doctors without realizing it was neuro.
Lyme disease test came back negative three times before it tested positive. They said that it was the worst case their office had ever seen, and this last test it had skyrocketed, so I'm certain what that means for me.
They are not certain if I had been rebitten or if this is just a relapse. I had already been treated twice with doxy.
[ 08-03-2009, 02:36 PM: Message edited by: chelas ]
Posts: 3 | From ephrata pa | Registered: Aug 2009
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Yes.
Please obtain your EEG reports. Just because they're within normal limits, doesn't mean they're normal. This has been the case for me.
If they're seizures, there are seizure medications that may help you. Lyme can create "atypical" seizures.
I had a seizure while at my LLNeuro's office, and he asked me whether I'd tried to take an ativan to abort the seizure, as I'm aware of when one is imminent.
I said, "But I'm not anxious; see? I'm all chilled out"
He reminded me that ativan or valium is used in Emergency to stop seizures.
I will PM you the name of an LLNeuro.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
ARRGGHH! I have heard this so many times before!
My friend has had those almost exact seizures for 12 years with Drs saying the same BS!
Anxiety, panic attacks, "adult tantrums" etc. It enrages me!
One doc said that she was bi-polar. I asked how he explained the seizures, he dismissively said he didn't. Uhh, like they were unimportant?
She tested CDC positive last summer for lyme, babesia, and bartonella. No doc suspected any of this as the cause!
When I asked her docs how many times they actually saw seizures like this from those other causes, they got very non-specific. As if they never did see them but had no other way to explain them!
I have read accounts of other people who have these atypical seizures and it's mentioned in Cure Unknown. Also, Mandy seems to have them in one scene in Under Our Skin. (you can see the trailer online).
So, yes, it is the lyme causing the seizures. One can also have verbal screechs that sounds like turrets syndrome.
On a positive note, my friend has had this for a long time and hasn't been close to death. They stop after a while sometimes minutes, sometimes an couple of hours. But they do stop.
If possible, it would probably be helpful to get a video of you having a seizure for the docs to see.
Anyway, good luck. You are not alone in your frustration.
James
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
My teenage daughter has Lyme-induces seizures, they began right after she was diagnosed at the hospital w/ Lyme and Babesia.
She had Video EEG testing was done and we found out she is having 2 different types-- Grand Mal and Partial seizures.
She's on Tegretol...so far it is helping a bit. She has gone from having the seizures every day, to about 1 every week!
How do you know yours are caused by food allergies? That's very interesting, I've never heard of that before. I hope you're able eliminate whatever foods are causing this for you...
God bless.
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
Shosty
Unregistered
posted
You could be having atypical seizures but another possibility is complicated migraines. The one-sided symptoms would be part of a "hemiplegic migraine." Many migraines resemble temporal lobe seizures or partial seizures, and GI symtoms are frequently involved. Or you could be having both migraines and seizures, or seizures only. These labels can be misleading in that there is sort of a spectrum, not isolated points, if you understand what I mean. Differentiating seizures, migraines, and panic attacks can be tough.
Anyway, regardless of the label:
1) Do an elimination diet, eliminating all possible allergens (soy, gluten, dairy, eggs, nuts, citrus, tomatoes, any other possible allergens) for 2 weeks, then rechallenge each one, one at a time, for 2-3 days.
Check you antibiotics for these ingredients as well!
Take probiotics, possibly Gastrocrom (Rx liquid med) to heal inflammation, and test for yeast (or treat). The stomach is the "second brain" and makes most of the serotonin in our bodies.
2) See an MD about trying Topamax or other anti-convulsant. Start at a tiny dose, like 7.5 mg, for Topamax, and work up slowly. You can use the sprinkles: they have no lactose or gluten and can be split up and sprinkled on food.
Topamax or similar drug is my most important suggestion!
3) Get a prescription for Zofran or compazine. We prefer zofran. But ER's are now sometimes using compazine plus Benadryl for migraines w/neuro effects so that might help.
4) Sparingly, try caffeine if you think it is coming on.
IP: Logged |
posted
My friend took anti seizure drugs but she still had seizures. They may have stabilized her mood swings a bit though.
She was given large doses of AS drugs to treat her "bi-polar" disorder but none really worked (uhh, maybe because she's NOT bi-polar?)
Oh yeah, she went to a "state of the art" neurologist who studied her in a "state of the art" facility in DC to figure out what the seizures and other neuro problems were.
After 2 weeks of being studied while being wired up to machines 24/7 the conclusion:
"She may be having seizures that our machines can't measure. They seem to be stress and anxiety related" WTF???
BTW I told these charlatans that it had been suggested that lyme could be a cause (this is before I started researching and really knew what I was talking about).
They absolutely HAD NO KNOWLEDGE of lyme and its effect and did NOT take it into consideration!
This Doc had pics of him with Rumsfeld, Scalia, and Chaney on his office wall. Need I say more?
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
I went to the emergency room again last night.
Where else am I supposed to go on a Sunday night when my muscles are spasming and I have no control of my arm or leg movement.
I am having chills and shakes and I took an ativan for relief except that it had the opposite effect on me. It stopped the tremors, it stopped the shakes, but then it made me unable to sleep.
Everytime I tried to sleep I felt like I was passing out, my brain feels like it is sizzling in a frying pan and the pressure is killing me.
I have had a non stop headache for three weeks, and horrible nausea. The pain was unbearable.
Not to mention that I am terrified to go to sleep because of the seizures that occur when I do wake up.
I had already been to the emergency room in the morning because of a horrible seizure.
My boyfriend rushed me there because he was afraid that if I didn't survive it that they would be the only ones able to resuscitate me. That's how violent the seizures are.
Well, let's just say that the tactics they pulled were disgusting.
They sent me a warning to never come back. The called the psychiatric department and tried to pretend that they were going to lock me up for an indefinite period of time.
The psychiatrist got a little irked and told me that he would have a word with the on call doctor.
I could hear them in the hallway. The doctor was saying that "if every person who didn't feel well came in to the emergency room could blamed their imaginary illnesses, and every little ache and pain, or slight exhaustion on an imaginary disease called Lyme. Everybody would have Lyme. And if her doctor wants to pretend that this disease exists and thinks that she can make her patient feel better by sending her to the CDC to make her feel like she's getting something done, then let her. That's her problem. The woman is crazy and those seizures she made up are impossible."
The psychiatrist came back in and mumbled something about no insurance and how people should be treated equally whether they can afford to pay or not.
He then asked me a million questions as to whether I was a danger to myself or others. About three pages worth.
I just kept asking him what they could do about the headache that I've had for the last three weeks. The other doctor only stated that yes, you've told us about that headache the last time you came in here, and the time before, but we can't do anything for you because we can't find any reason or cause for them.
Basically, I must be making them up.
So then the doctor says that he had to have another discussion with the on call doctor so that they could release me.
Apparently the doctor who was in charge didn't want me released, he wanted me placed in a psychiatric unit. I don't really believe that though, I am pretty certain that it was a scare tactic, because I know that beds in that area are pretty limited.
So they told me that I had to wait while they convinced him to let them release me. It was the stupidest act that I had ever seen.
It's not something that is going to keep me from going to the emergency room if I feel like my life is at risk.
Then they had me wait longer, I guess to make me feel nervous so that I wouldn't want to go back again.
Of course, the one doctor lied to me and told me that the on call doctor was researching my file and everything he could about Lyme which was completely untrue, because, duh, I already heard him say that it was definitely an imaginary and made up illness.
So then the psychiatrist came back in and told me that he was sorry that they had to release me.
Then he asked me if I had ever heard of Fibromyalgia, another pseudo illness that people like to imagine is the cause of all of their pseudo pain.
And that pseudo doesn't really mean that I am intentionally making it all up, just that anxiety has a way of doing that to people.
My goal this week: work very hard at getting that state assisted medical care, because this sucks
[ 08-03-2009, 02:42 PM: Message edited by: chelas ]
Posts: 3 | From ephrata pa | Registered: Aug 2009
| IP: Logged |
posted
DOCTORS REALLY BLOW!!!!
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
| IP: Logged |
bettyg
Unregistered
posted
clel, welcome
please break up each of your 3 posts into short paragraps and DOUBLE SPACE between each of the paragraphs for us neuro lyme folks so we can comprehend and read them. we can not as is.
use my guidelines below in how to edit using the pencil, 3rd box to your right of your name, ok. huge thank you from us neuro lyme folks
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
posted
It is FREAKING disgusting that the ER you went to treated you like that. I'm sorry you had to go through it.
You should find out the doc's name and report him to the state medical board. How dare he declare you insane just because HE can't find a cause for you seizures?
This is so familiar. When my friend has had the big seizures she often ends up in the ER especially if she's alone or driving. It's scary even though she's had them for years.
The doctors' eyes get big then they scratch their heads.
They NEVER have ANY idea what is going on. Fortunately she lives in a small town and the ER has gotten to know her.
Also, I've been there numerous times to explain what's going on and that there's nothing to do but wait until they subside.
The Drs are pretty understanding and have never threatened to ban her. They usually keep her under surveillance and hydrate her with IV until they subside.
They are smart enough to know that they DON'T know what is going on!
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
I am sorry to hear what you are going through. Seizures are very debilitating and have caused me many problems. I have been having severe seizures for over a year caused by lyme and bartonella. I can NOT take any seizure medication or any benzodiazpines (i.e. ativan, klonpin...) because they all make me have worse seizures.
Lack of sleep, reading, going online, thinking, listing to music, and even having to visit the doctor always make me have seizures. Whenever they start they are very hard to quit the cycle.
I am in my bedroom for over 23 hours a day because of this. I went from having short seizures lasting only a few seconds to longer ones that can last hours and I will have one
right after another. I have them all night long and a few in the daytime. It has really affected my memory and doctors havent been able to help
me. I someties walk and talk during them and am very unbalanced and basacillay act like im on drugs! I can also tell when mine are coming on because I get a weird aura. I have been told I was psychosomatic and must have been abused as a child to be making such horrible things up.
I have had an ambulatory unit and several EEGS done and nothing shows up besides decresaed brain functioning. Sadly with lyme even if somebody
witnesses you having a seizure they go off of test results. My doctor said that lyme seizures affect a different part of the brain then normal
seizures so they are missed. Even a few seconds that you black out can be small seizures. Best of luck with all of this.
Feel better,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Friends,
I have seizures caused by Lyme also.
Mine aren't as bad or as frequent as what you're describing.
However, I did read an article on alternative treatments or natural treatments for seizures, and was already taking about 75% of the supplements recommended.
So, since I can tell when I'm about to get a seizure (from my diary of symptoms--I traced it back to what I wrote about every time before I had one), I decided to try more B6 when the pre-seizure feeling would start up.
This has totally and effectively worked for me!
What a surprise for me when the KPU protocol came up, and there were the SAME CORE SUPPLEMENTS!!! Zinc, B6, omega oils, niacinamide.....
Dr. K says that 80% of his Lyme patients tested positive for KPU.
If I were having seizures, that's the first place I would start.
Hope this helps.
Love,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I have what I guess are Lyme induced seizures also. They aren't typical seizures. Mine only happen in the morning upon waking, (or maybe it's what wakes me up) My seizure feels like my hearing and brain are blinking off and on, off and on, off and on every few seconds. That has been going on for a few years and progressively got worse this past year so that now sometimes when the blinking is going on, my eyes are also clicking downwards with the blinks.
The first neuro. I told this to acted like I was a moron and suggested I needed to be on psychotherapy drugs. Another neuro. tried to take me seriously, because he found I had hyper reflexes, clonus etc. But after a brain and spine MRI revealed all was well, again I was told I needed anxiety meds and a shrink. I don't even mention it at the ER anymore.
My LLMD put me on Valium and that seems to lessen the attacks. They were coming on nearly every morning (or sometimes if I napped) but now they are sporadic. I tried a seizure med once but it made me so ill and horrid headaches and I couldn't function at all so I only took it for about 2 weeks. So I don't know what kind of seizures they are...I only guess they must be Lyme related.
It's been over a year, but an EEG and a sleep study were both supposedly normal.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic