Need some suggestions and ideas here. My daughter, 25, has had Lyme for 15 years. Been treated with many different RX since being diagnosed by LLMD a year ago. She is now
starting to have what seems to be seizures. The first time she woke from a sound sleep and was foaming at the mouth and shaking and felt sick to her stomach. Of course she didn't wake me up.....she just thought it had something to do
with the Lyme, babs, bart and erich. Well....DUH! She was taking a bit of a break from the RX's when she had the first one so we know it wasn't an RX that caused it. She is now on Melarone, Doxy and Levequin along with all the normal suppliments and probiotics.
Just wondering if anyone else has had this problem and what they did.......LLMD is having a hard time figuring it out too.
Thanks for any help,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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bettyg
Unregistered
posted
Ice, I'm sorry to read about this. I have no expertise but putting this back on top for folks w/experience for you!
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
ICE, I'm so sorry to hear it.
A number of Lymies report seizures. There seem to be a number of suspected causes -- brain lesions, low brain blood-flow, neurotoxins, cardiac problems, herx reactions, neurotransmitter disruptons, and other stuff about which I have no idea.
There are different manifestations of seizure activity -- aural and visual hallucinations, blanking out (petit mal), thrashing around (grand mal), myoclonus, and others. In the hubby's case I think he actually experienced a variety of seizure activities but we didn't realize it until he had some big obvious grand mal ones.
The hubby had grand mal and petit mal seizures, and smaller visual and aural disturbances, on and off for about 3-4 years in the middle of Bb tx and after he'd had LD for several years. Some of them happened when he was on an abx holiday.
He said the grand mals were always preceded by a distinctive smell, then his eyes would roll back and he'd thrash around (I witnessed this several times), then he'd come back to himself with no awareness of what had just happened or how much time had passed (usually just a few minutes). He'd be very weak and tired afterwards. During the petit mals he'd mentally blank out completely, but there would be no physical signs--it took me a while to catch on to those.
There were no abnormalities in his EEG or MRI when he was checked out. He never had a spect scan. We didn't do extensive neurotransmitter or amino acid testing, but he definitely did have a problem with low dopamine around the same time as the seizures occurred.
I don't know specifically what caused the seizures or what made them go away. All I can say is he's now been treated for the coinfections (which he wasn't being treated for at the time of the seizures) and seems to have shaken everything but babs and Bb, which, if not gone, are significantly reduced.
Also he did extensive treatment with CSM for neurotoxins, and has not had seizures since his last round of CSM. At the time of the seizures he also tested positive for a lot of viruses, including CMV, EBV, and HHV, and had hypercoagulation and very high fibrinogen -- these also seem to have gone away. The dopamine problem also seems to have resolved itself.
He hasn't had any seizure activity of any sort for several years. He doesn't appear to have lasting damage from them. but there's been no formal evaluation to determine this.
In some cases that I know of, some Lymies with seizures have physical abnormalities caused by LD/TBDs like brain lesions, low blood flow (which can resolve with tx). MRI and SPECT would help dx these.
In his "Beyond Antibiotics" paper, Klinghardt discusses LD seizures, and links them in part to viral infections. He has some seizure tx recommendations in that paper, and probably has more updated ones from the recent conference in Seattle.
FWiW, The hubby's been very responsive to abx and herbs, and has not had much trouble coping with them or detoxing from them, so in his case I don't think the seizures were induced by the abx themselves.
I do so hope this is just a passing phase on the way to wellness for your daughter -- I know how awful it is to watch someone go through this with no idea of what is causing it or what will stop it.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Icy. Good to hear from you. I'm so sorry your daughter is having such a frightful thing. Has she had MRI/Spect scans? A consult with a lyme-literate neuro would be good, if one could be found in your area.
Topamax might be of help - it's good for headaches but originally intended as an antiseizure med. Has she tried that?
Anti-virals too, as Minoucat suggests. And a blood workup - low white count can suggest something viral going on during such events (as opposed to bacterial).
A hug to you for your unflagging mothering!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A co-workers' son had frequent seizures since birth. His seizures were reduced while he was on a diet determined by an altnernative therapist, I belive a doctor of chinese medicine.
His seizures were not Lyme related. He was born with severe disabilities.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Minocaut,
What did you mean by CSM for neurotoxins. I, too, have seizures and winning the battle over them would be a large part of winning my battle over lyme? Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9014 | From Illinois | Registered: Aug 2004
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posted
Thank you all for your suggestions and experiences. I always know I can come here and get answers. Michelle, I am going to speak with LLMD about the Topamax, I believe maybe she was on that in the past for her headaches.
Mino, she was on abx holiday when she had the first experience so you might have something there, although since starting back up on different meds she is still having the "feeling"
that one might be coming on. LLMD thinks maybe she is VERY toxic. He is kind of baffled by all of her symptoms and the fact that she is basically back to square one and feeling like she did before starting treatment.
I will keep reading this thread, hopefully we can figure something out for her.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hiker -- CSM is cholestyramine, used to (theoretically) sequester and eliminate neurotoxins. Richie Shoemaker describes it in his books Desperation Medicine and Mold Warriors, and on his site at http://chronicneurotoxins.com It's available by prescription; there is one pharmacy that makes it up so that it does not have any additives. Some people have used OTC betasitosterol or Chitosan (from shellfish) instead of CSM.
It seemed to be helpful (I think - the hubby is more skeptical. See some of Riversinger's posts about her experiences with it, too. It takes a while to have a significant effect -- I think 45 days at a minimum.) Whether CSM played a role in stopping the seizures I don't know.
I think a great deal depends on why the seizures are happening. For my husband, there was nothing about the strucure or tissue of the brain that seemed to be wrong (no lesions that we know of, or damage to the cortex; but he may have had blood flow problems). Therefore I'm suspecting in his case the seizures had to be caused by some chemical factor, like neurotransmitters or toxins. But this is purely speculative.
Serotonin reuptake inhibitors did absolutely nothing for him (he also experienced intense depressions at times, completely out of the norm for him). However, monoamine oxidase inhibitors, which prolong the life of dopamine in the brain, were of some help for a while. Again, I don't know if they played a role in helping with the seizures or not.
He also had major gut issues at the time, now resolved. The gut is also a heavy user and producer of some neurotransmitters, so that may have played a role in the seizures too.
So many things were going on that it's really hard to say what caused what, or what tx were effective for what set of sx. Wish I could be more definite and more helpful! Maybe doing a poll on the topic might net more specific information.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Did she remain conscious during the seizure? I have at times major tetany seizures or spasms that involve the entire body. It can look like a gran mal. I never lose consciouness. They come at night most times when I try to go to sleep. When I have had a raging active infection I can be awoke from a sleep with them.
Posts: 160 | From texas | Registered: Oct 2005
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