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anybody recovered from seizures?

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Posted 2/16/2014 10:23 PM (GMT 0)
Hi All! 

I have not been on this board in a long time--I am the mom of a daughter fighting Lyme.  She has really been doing pretty well.  Just recently some setbacks with migraine headaches and seizures.  Seizures have been the one thing that do not seem to go away.  So I am curious if there is something we are missing.  Any thoughts?

Thanks in advance for any suggestions!

~~Joni

Posted 2/16/2014 11:14 PM (GMT 0)
I would suggest that you read through this thread to see if there is any info that may be helpful:
www.healingwell.com/community/default.aspx?f=30&m=2934012&g=2934704#m2934704

And I'm so very sorry to hear that Caity has these issues to deal with. Hugs to both of you!
Posted 2/17/2014 1:04 AM (GMT 0)
Hi Traveler!

You are such a consistent sweet presence in this place!! ALWAYS a pleasure to hear from you, your comments and wisdom to share! You are such a blessing!! I hope you are doing well!

Just when we think we got this thing pretty much licked, here it comes again! Not as bad--but the darn seizures!! Tortuous to watch. . . It is the main thing that we are fighting. Thank you -- I will check out the thread you referred me to!

Hugs and love to you!
~~Joni
Posted 2/17/2014 7:04 AM (GMT 0)
Joni:

Sorry to hear of these issues. I know for me it would be way more difficult to see a love one go through this ordeal, than to actually have it to live it myself.

I don't suffer from seizures or really can offer any advice regarding changes is treatment. But what I can add is the LLND I am seeing had undiagnosed Lyme for 15 years and her main symptom was seizures. She actually has a video in one of the presentations she has made in Canada, quite sad to see. But she is fully recovered and has no issues with them. So its definitely possible, just need to find the right way!

Keep fighting and you'll get there!

LC
Posted 2/17/2014 7:16 AM (GMT 0)
Lyme contractor you see an ND? I was trying to get in with a dr H in Ny, but now I am going to be seeing a Dr H in New Hampshire who does IV antibiotics with a naturopathic protocol as well. He's been treating TBI in adults and children since 2003 and was trained by some of the pioneers of this day. I have some hope... How have you found an ND to be, and can your prescribe antibiotic therapies as well?

To Joni, I wish I had advice. I'm so sorry. I have 6 children I birthed before I knew what was wrong with me. Some are symptomatic and we haven't gotten treatment yet. My heart goes out to you as a mom. Hugs
Posted 2/17/2014 3:09 PM (GMT 0)
Maine:

Yes I'm seeing an LLND and I really like it. She's very experienced and so knowledgeable when it comes to Lyme. She uses a modified Cowden protocol. Did a detox regimen for a month before, then when I got my positive Igenex/CDC I was on to the Lyme protocol. Minimal to no herxing. Can't really say with certainty its working yet because its only been one month but I am feeling better and have put on weight that I had lost, so I think that's a positive sign.

No she cannot prescribe antibiotics. I live in Canada there's not a glimmer of a chance that a doctor will prescribe long term antibiotics. So most have to travel to the US and get treated if they choose traditional medicine. My LLND is the only one I know of in Canada as well so getting treated here is very difficult. I travel 1000 miles to see her.

I would give and LLND a shot, providing they are qualified and knowledgeable. From the research I've done (which is a sickening amount haha), herbs are just as effective if not more than antibiotics. We will see.

Good luck!

LC
Posted 2/17/2014 3:44 PM (GMT 0)
Thank you! The LLND I'm supposed to see specializes in TBI and works with LLMDs as well. He also can order IV antibiotics, I'm feeling a glimmer of hope. He also treats children! :) my 11 yr old is so symptomatic I'm having a very hard time about it emotionally right now. I'm glad you have out weight on. I have a concern that I will drop more weight during treatment.
Posted 2/17/2014 3:59 PM (GMT 0)

treehousemom said...
Hi Traveler!

You are such a consistent sweet presence in this place!! ALWAYS a pleasure to hear from you, your comments and wisdom to share! You are such a blessing!! I hope you are doing well!

Just when we think we got this thing pretty much licked, here it comes again! Not as bad--but the darn seizures!! Tortuous to watch. . . It is the main thing that we are fighting. Thank you -- I will check out the thread you referred me to!

Hugs and love to you!
~~Joni

blush Thank you, Joni! I do hope that you find answers soon. I went through some seizures, but mine were obviously from an overload of toxins/abx use. Once I stopped the abx and gave my body the detoxing in was so in need of, the seizures stopped for me.

I completely agree with Lyme Contractor about watching my child go through this - I would completely crumble. You have my admiration for being so strong and proactive. I really hope that you can find the answers quickly.
Posted 2/17/2014 6:06 PM (GMT 0)
I would try zeolite. It binds to ammonia. Excess ammonia is a byproduct of Lyme disease and can be a cause of seizures :-(.

Here is an article:http://www.nature.com/nm/journal/v19/n12/full/nm.3400.html

Lyme up regulates the cbs gene in the body which in turn causes an excess of ammonia. Some doctors believe ammonia to be the primary neurotoxin in lyme.

I use Zeolite Pure.
Posted 2/17/2014 6:21 PM (GMT 0)
Interesting on the ammonia, I wonder if they have ever given patients lactulose which is administered for hepatic encephalopathy in patients with mental status changes from ammonia accumulation... I used to work in the ICU. I'm really wondering if low dose lactulose would help!
Posted 2/18/2014 3:00 AM (GMT 0)
Thank you for suggestions and thoughts. It is, of course, pretty distressing to watch your child suffer. Sadly, I have an awful lot of company. . . (Did I mention I HATE Lyme?!)

SLML--she does take Zeolite daily. Anything else help the ammonia?! I also ordered some of Dr. Jernigan's neuroantitox today too.
Posted 2/18/2014 4:50 AM (GMT 0)
Ask about lactulose it causes people to excrete ammonia, that is what it is used for in hospital etc....... It prevents ammonia buildup from affecting the brain.
Posted 2/18/2014 4:51 AM (GMT 0)
Btw I hate lyme and co infection too! Hugs
Posted 2/18/2014 6:35 AM (GMT 0)
I just remembered a youtube link I watched about a girl who was having seizures due to lyme disease and passing out and it went on for years. She went through multiple rounds of antibiotics (years worth) and finally she tried cholestyramine which binds neurotoxins and she was almost 100%. She is healthy now and just had a baby. Apparently the neurotoxins and not the infection were the cause of her ongoing symptoms.

Here is the link to their story. It is long but hopeful:
http://www.youtube.com/watch?v=So2K68r8pOY

PS - Your daughter is blessed to have a mom like you!!!
Posted 2/20/2014 2:03 AM (GMT 0)
Hi Maine--I am a nurse too!!! I work part time in a day surgery center and part time for a naturopath--what a combo,huh??!! I have a foot in both worlds! That being said, the alternative path that we have chosen has been the best for us. I have never heard of lactulose--but will check it out! I did order Dr. J's neuroantitox--and that is also for ammonia. So sorry to hear about your kiddos--so hard. I hope they are doing well! God bless you!!

SLML--Hey thank you so much for that info and youtube link!!! I have heard of cholestyramine, but have no experience with it. will ask our ND about this tomorrow!! And thank you for the kind words as well!! I know that my daughter will beat this--she went from bedbound to holding down two jobs and going to junior college. She was doing so well----BUT her health has always been low priority to her and she was eating nothing but junk food and running constantly. We figured she would probably crash, but did not expect the whole seizure thing. It has thrown us for a loop! Our ND thinks EMF is part of the problem--she has her cell in her hand almost around the clock!

Sure do appreciate you guys!! <3
Posted 2/20/2014 3:43 PM (GMT 0)
I would suggest that you also read through this thread as well to see some more thoughts too:
www.medicinenet.com/interstitial_cystitis/page4.htm#what_are_the_signs_and_symptoms_of_interstitial_cystitis
Posted 2/20/2014 4:03 PM (GMT 0)
Hmmm, Traveler--Not sure that link was for us?????
Posted 2/20/2014 5:28 PM (GMT 0)
I am starting to see some small improvements from my seizures. The doctors found out I had mycroplasm, and mold, has your daughter been checked for these?

Also I do not detox well so I take cholestermine everyday to help, it's making my seizures less violent, it hasn't stopped them, but I am no longer falling because of them.

I hope this helps.

justme.
Posted 2/21/2014 7:10 PM (GMT 0)

treehousemom said...
Hmmm, Traveler--Not sure that link was for us?????

LOL! blush - You're right!! Wrong thread!!! turn Giggle!
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