My baby sister has obvious undiagnosed lyme disease. Doctors are planning an invasive brain procedure to monitor her seizures from inside the brain (next Thursday), then they plan to try and remove portions of her brain at a later date in order to stop her seizures.
She has had two so-called negative lyme disease tests, but I believe they were ELISA, not WBs. She began having seizures when she was 14 months old and she is now 32 years old. In fact, she has probably 90% of every known lyme disease symptom. Her seizures are uncontrollable with medications. We've been told she is mentally retarded since she was in the 5th grade. Doctors have not been able to give us a definitive reason for this conclusion, but lyme has not been a concern or consideration since her symptoms began. She does experience the Jarsich-Herxheimer reaction after natural medicinal challenge (oh, surprise).
She underwent video monitoring of her seizures approximately 3 months ago. The doctors were about to discharge her because she did not have a seizure within the allotted timeframe. She has major multiple chemical sensitivities, so I asked a family member to bring in a bottle of lysol for her to smell in order to set off a grand mal seizure. It worked, she had several hard grand mal seizures.
I am so scared for my little sister with this upcoming invasive procedure, but I don't know what to do. My family will not listen to me about the possibility of her having lyme disease.
Does anyone know what course or action the spirochetes may take once the brain is opened up? I am quite afraid this procedure could kill her.
Here is the letter recently written to her from the epilepsy group at a major teaching hospital:
Dear Ms. Blank,
The Epilepsy Surgery Group met this week to review your diagnostic testing and your candidacy for epilepsy surgery. The following information was reviewed:
1. MRI is normal, showing no particular seizure onset areas from a structural standpoint. 2. EEG in between the seizures showed irritable activity from the right temporal lobe much more often than from the left temporal lobe. 3. The nature of your seizures suggested they came from the right half of the brain, but probably outside the middle part of the right temporal lobe perhaps the frontal lobe). EEG recorded during these seizures lateralized to the right hemisphere, but did not localize well within the hemisphere. 4. Neuropsychiatric testing showed no localizing deficits. 5. PET scan performed in 2004 showed decreased metabolism in the right more than left temporal lobe.
In summary, your testing to date indicates that your seizures likely arise from the right side of the brain, though we do not have enough information at the present time to decide whether they arise from the right frontal lobe, the surface of the right temporal lobe, or the middle portion of the right temporal lobe. Since the outcome of an operation depends on localizing the seizures as definitely as possible, the group did not feel that you are a candidate to proceed directly to seizure surgery. Instead, we propose doing a further step of testing where you are admitted for video EEG monitoring, taken off medications, and seizures are recorded. We would then attempt to perform a SPECT scan during one of your seizures. Please note that it is occasionally not possible to get such a study done during the admission because the material they give for the SPECT scan has to be given immediately upon having a seizure, but once the material is made up, it only lasts about 3-4 hours. The purpose of this test would be to try to give us further localizing information about the onset of your seizures so that plans can be made for a stage of invasive video EEG monitoring. With this proposed stage, the neurosurgeon performs an operation to place electrodes inside the head, closer to the presumed area of seizure onset. It may also be possible that the SPECT scan shows us that this stage of testing cannot be performed and that seizure surgery is not possible at this time.
Please contact us at 000-000-0000 if you have any questions about the proposed testing.
I'd sure appreciate your input on this one. I'm scared to death of this procedure -- I know she has lyme and coinfections.
Thanks so much in advance.
Posted by JimBoB (Member # 8454) on :
Hi Vicky: So sorry to hear about your sister.
But, HOW do you KNOW she has Lyme, for SURE? Can you get a Bowen test taken for her? THAT should prove it IF she does have it.
Other than that, I sure wouldn't know what to tell you. Any indications that she was ever bit?
Take care of yourself, too. Don't stress yourself out too much.
Jim Posted by Lymester (Member # 5848) on :
Biting:
Can you send a pm to Marnie? She has experience with her sister. I don't know if Mg (magnesium) intake is a possibility with this complication of symptoms and development from age 5? through 32?
M has studied extensively and definitely has a chem/sci background according to her postings.
When you desperately seek help from anything, you'll try anything.
When is this surgery supposed to happen?
So sorry to hear this. Just what you don't need is the stress in caring for another person.
Keep in touch.
Posted by Carol B (Member # 9110) on :
Biting Back- if your sister is 32 she should still be her own medical guardian-unless it is in writing otherwise-in order to request and ask for Lyme testing.
I should think your parents would also, at this point, prefer a testing for Lyme over brain surgery.
Other than that, I can tell you my husband had a right temporal lobectomy to help control his epilepsy-he is improved and his seizures are at least controllable by medication now-as long as he remembers to take them-if not LOOK OUT.
He had a sophisticated test which determined that most brain function from the right temporal lobe had transferred to the left side of his brain to compensate for the brain damage in the right. His seizures started in childhood- most likely from lead paint-from a row house in Baltimore City.
I think his brain surgery was more stressful to me than it was on him! He was fortunate though because they were able to pinpoint the origin in the brain for his seizures. But then during surgery they ran into a major artery in the way and were not able to remove all the tissue they had hoped to.
He was followed by the epilepsy center of University of Maryland Hospital.
Of course all this doesn't answer your concern your sisters seizures may be lyme related-just wanted you to know we have been throught the operation.
Carol
Posted by lymemomtooo (Member # 5396) on :
BB..Recent spect results from a known lyme encephalitis patient, our daughter:
Large right frontotemporal area of severely diminished perfusion.....Plus a lot more..But seems like this is your target area..
So yes, this may be lyme related. We also dealt with nightly violent seizure like activity until months of IV Rocephin and Doxy and ect's..
Good luck..Will be praying that all works out ok..lymemomtooo
ps, the radiologist went on to say that this may be indicative of neuroborreliois and that it may improve with abx. He suggested that this has occured in clinical studies.
Posted by TexasChaos (Member # 7465) on :
Ugh, I am so sorry. What a stressful thing to go through for both you and your sister.
I agree with the above posters about getting a *reliable* Lyme test before brain surgery. Brain surgery is so delicate... I don't think the surgery will do her any good if it is truly the Lyme causing these problems. In fact, it could just cause more trouble.
Considering how long she's had these symptoms, there is most likely some permanent damage to some of her organs. But, if Lyme was detected and treated, I believe it would extend her life span.
Good luck to the both of you.
Posted by northstar (Member # 7911) on :
"My family will not listen to me about the possibility of her having lyme disease."
Her legal guardians and her doctor are the ones to approach. I would set up a consult appt. with the md, to show on paper the reasons for your concerns. Then, just go to legal guardians and do the same.
I would organize all research info concerning:
1. criticisms of ELISA 2. reasons for seronegativity 3. use of Igenix western blot, including references to their stellar performance when investigated by (FDA?CDC?......whomever) 4. All published lists of symptoms, i.e. PaLyme.org, Burrascano, Fallon, etc. with notations to which symtom she has exhibited now, and in the past.
Include here any research to seizure activity, both research, and personal experience perhaps as related here on lymenet.
5. Research of herxheimer as only occuring in spirochetal diseases.
I would make it in a formal notebook presentation, tabs, etc., and then request as one final test, the Igenix full panel, MDL, Quest, and panels for co-infections.
Then just a final statement that you feel it deserves one final round of blood tests before invasive procedures. Factual, not emotional, yet still expressing your hope and concern that this final attempt may provide the help your sister needs.
Perhaps others can think of other research to put in there.
All you can do then is "let go and let God..." You have done the best you can do.
If they refuse to even look at the presentation, then they have other issues, with your sister as just a background player in this.
I would then just calmly state a summary about when serious decisions are made, that it is necessary to keep an open mind to all possibilities and all avenues are worthy of investigation. Especially since the doctors have not found a solution after all this time, other than pallatiative care.
Ultimately it is their decision to sign the papers. You can only inform and caution them.
Maybe others can provide input with this approach.
Northstar
Posted by jblral (Member # 8836) on :
Is there any way you could contact Dr. Brian Fallon at columbia University? (Email and phone should be listed on the university's web site.) Perhaps he could point you in a direction you need--suggesting a next course of action?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TexasChaos: . I don't think the surgery will do her any good if it is truly the Lyme causing these problems. In fact, it could just cause more trouble.
First, I'm so sorry this is going on. I feel for you and for your sister!
Maybe you can approach your parents with the above information. Tell them you are worried that your sister will not be helped, but made worse if it's actually Lyme disease causing the seizures.
The thought that they may be causing her more harm than good MAY get them to THINK a little.
Your sister may also benefit from a gluten-free diet... gluten intolerance can also cause seizures.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Biting Back:
My baby sister has obvious undiagnosed lyme disease. Doctors are planning an invasive brain procedure to monitor her seizures from inside the brain (next Thursday), then they plan to try and remove portions of her brain at a later date in order to stop her seizures.
She has had two so-called negative lyme disease tests, but I believe they were ELISA, not WBs .
She began having seizures when she was 14 months old and she is now 32 years old. In fact, she has probably 90% of every known lyme disease symptom. Her seizures are uncontrollable with medications.
We've been told she is mentally retarded since she was in the 5th grade. Doctors have not been able to give us a definitive reason for this conclusion, but lyme has not been a concern or consideration since her symptoms began. She does experience the Jarsich-Herxheimer reaction after natural medicinal challenge (oh, surprise).
She underwent video monitoring of her seizures approximately 3 months ago. The doctors were about to discharge her because she did not have a seizure within the allotted timeframe.
She has major multiple chemical sensitivities, so I asked a family member to bring in a bottle of lysol for her to smell in order to set off a grand mal seizure. It worked, she had several hard grand mal seizures.
I am so scared for my little sister with this upcoming invasive procedure, but I don't know what to do. My family will not listen to me about the possibility of her having lyme disease.
Does anyone know what course or action the spirochetes may take once the brain is opened up? I am quite afraid this procedure could kill her.
Here is the letter recently written to her from the epilepsy group at a major teaching hospital:
Dear Ms. Blank,
The Epilepsy Surgery Group met this week to review your diagnostic testing and your candidacy for epilepsy surgery. The following information was reviewed:
1. MRI is normal, showing no particular seizure onset areas from a structural standpoint.
2. EEG in between the seizures showed irritable activity from the right temporal lobe much more often than from the left temporal lobe.
3. The nature of your seizures suggested they came from the right half of the brain, but probably outside the middle part of the right temporal lobe perhaps the frontal lobe).
EEG recorded during these seizures lateralized to the right hemisphere, but did not localize well within the hemisphere.
4. Neuropsychiatric testing showed no localizing deficits.
5. PET scan performed in 2004 showed decreased metabolism in the right more than left temporal lobe.
In summary, your testing to date indicates that your seizures likely arise from the right side of the brain, though we do not have enough information at the present time to decide whether they arise from the right frontal lobe, the surface of the right temporal lobe, or the middle portion of the right temporal lobe.
Since the outcome of an operation depends on localizing the seizures as definitely as possible, the group did not feel that you are a candidate to proceed directly to seizure surgery.
Instead, we propose doing a further step of testing where you are admitted for video EEG monitoring, taken off medications, and seizures are recorded.
We would then attempt to perform a SPECT scan during one of your seizures.
Please note that it is occasionally not possible to get such a study done during the admission because the material they give for the SPECT scan has to be given immediately upon having a seizure, but once the material is made up, it only lasts about 3-4 hours.
The purpose of this test would be to try to give us further localizing information about the onset of your seizures so that plans can be made for a stage of invasive video EEG monitoring.
With this proposed stage, the neurosurgeon performs an operation to place electrodes inside the head, closer to the presumed area of seizure onset.
It may also be possible that the SPECT scan shows us that this stage of testing cannot be performed and that seizure surgery is not possible at this time.
Please contact us at 000-000-0000 if you have any questions about the proposed testing.
I'd sure appreciate your input on this one. I'm scared to death of this procedure -- I know she has lyme and coinfections.
Thanks so much in advance.
Vicky, I too was going to suggest Dr. Fallon since he is our lyme brain expert!
Where is she having the surgery done? What is the success rate of others like her for this procedure? Best wishes to her/your family.
I too would make sure she has signed necessary paperwork for durable power of attorney health and the other one in case she loses her ability to make decisions HERSELF. Bettyg Posted by liz28 (Member # 4946) on :
It doesn't sound like there is enough information yet to do this kind of invasive procedure. No matter how long your sister has been ill, medicine is changing so quickly that anything you read or observed from just three years ago is probably obsolete. So if you base your choices on what you observed in 1990, or 1998, you are missing a wide range of research that could assist you.
It is very common for people of older generations (i.e. over the age of 25:) ) to think that the best way to solve a medical problem is to find the most official authority figure and do whatever he or she says. Younger people automatically turn to the Internet, correspond with thousands of people around the world, and come up with their own ideas. There are so many inter-collegiate online databases now, you can probably get access to them just by having one member of your family go back to his or her alma mater, sign up for an alumni library membership, and read through every medical resource in existence.
That does not mean the answer to your sister's problem is on YouTube. But there is something distinctly suspicious in any situation where somebody asks, should I trust the authority figure? These days, they are in direct competition with the collective unconscious. And your sister has survived with this for over thirty years. If she can wait just a little while longer, there may be an unexpected answer out there for you.
By the way, I have been symptom free of babesia all summer thanks to medical research from Google.
Posted by achey (Member # 6284) on :
hi BB
It may indeed be the case that lyme has contributed to you sisters seizures but more importatn is getting control of those seizure.
My son and I both have had seizures fromd lyme. My son's seizure resolved with iv abx, biofeedback and neurocognitive therapy. My son still has encelephapathy and is on iv abx, but is progressing very well.
I have been on 3 rounds of iv abx for a total of 16 months pulse orals and coinfections, and still the seizures stayed. 6 weeks ago I started taking anti epiletic medication, and will be working with a very good neurologist for many years to be seizure free.
My son's spect scan results were signifigant, yet his seizures were mild, while my situation was just the oppisite.
I guess the thing I'm saying is that while your sister may have lyme, she does have seizures.
The siezure disorder may be indepantent of the lyme and she deserves to be free of seizures.
I'll pray for all of you!
Posted by Jill E. (Member # 9121) on :
I second the idea of contacting Dr. Fallon. He is the expert with SPECT scans, Lyme, neuropsychiatric Lyme, etc.
You and your family will be in my prayers.
Jill
Posted by tickedntx (Member # 5660) on :
I agree with those who have suggested contacting Dr. Fallon. Best option, if she can travel, would be to take her to NY to go through their Lyme evaluation service.
At the very least, contact him to see if he would review the scans and related reports to determine the likelihood that the seizures may be due, or at least related, to Lyme.
If he believes that they are, perhaps your sister's doctors would be willing to consult with him for further testing/evaluation.
Posted by seibertneurolyme (Member # 6416) on :
So sorry you and your sister are going through this.
Have no idea if your sister has Lyme and/or other tickborne infections. However, there are enough clues in what you have reported to suggest a strong possibility of such infections.
Hubby was never clinically diagnosed with seizures -- however, when he was the most symptomatic (was already on Depakote for over a year at that time) his EEG's started showing slowing in the left frontal lobe. He never had actual seizure spikes on the 6 or 7 EEG's done over the course of a year, but most if not all of them were abnormal. He did not have a SPECT scan done.
Hubby has been on IV Ativan for over 3 years now -- I administer it multiple times daily as needed. Stopped the Depakote after trying to add 4 or 5 other different seizure meds none of which were effective.
Parkinsonian tremors/myoclonus/seizure-like episodes are greatly improved. Frequency and severity of symptoms varies greatly and is very much tied into antibiotics and/or herbal treatment protocols which kill Lyme and more specifically Babesia. If hubby could get rid of the Babesia I feel confident that he could stop the IV Ativan and that the seizure-like episodes would be gone.
Hubby is seronegative for Lyme, but lucked out and on one of many tests he got a positive Lyme PCR from IGeneX.
Here is a reference to multiple chemical sensitivites and Lyme.
Northstar made some very good points, but obviously you have had very little time to get together such a presentation.
Will keep you and your sister in my thoughts and prayers.
Bea Seibert
P.S. The first actual test result hubby had that showed his tremors/myoclonus might be infectious rather than a result of anxiety/depression was a QEEG -- the test showed that the right and left brain were not communicating properly. One suggested reason for this was possible exposure to malaria as a child -- hubby actually had Babesia as an adult (later found on a slide from Bowen labs). It was a current infection rather than a past infection.
Posted by Biting Back (Member # 6018) on :
Thanks to all for the awesome suggestions. My sister has a history of numerous tick bites and has bell's palsy so bad her right eye won't even open. The neuro-ducks claim the seizures caused her drooping eyelid, but don't recognize her crooked smile. Heck, four members of my very small family have bell's palsy. Five of us have (had) seizures, mine and my 2 son's were cured when we were diagnosed with lyme and began treating it.
I need to act fast, she's to be admitted to the hospital Thursday.
Thanks again. Posted by lpkayak (Member # 5230) on :
this is so sad and it just makes me sick
recently i have been running into a lot of people who have been having brain surgeries and brain chemo for symptoms that really sound like lyme to me
after these invasive procedures symptoms get even more mixed up and hard to dx
BB-TRUST YOURSELF-YOU'RE ON THE RIGHT TRACK HERE-IF THERE IS ANY WAY YOU CAN GET IN TOUCH WITH DR FALLON DO IT. HE'S A GOOD GUY. THIS IS HIS SPECIALTY. I THINK HE'S YOUR BEST BET RIGHT NOW. GOOD LUCK.
(i'll pm you another neuro doc's #-maybe others can too...if they listen to you maybe they will get you to fallon)
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