so I ask other who have been there, what has helped you? I am emotionally at wits end. feeling really sad and disconnected from life by this assault on my attempt for well-being.

I always keep wondering what I am doing wrong!
 

Tremors/myoclonus/seizure-like activity is one of hubby's most persistant and aggravating symptoms.

He has tried numerous seizure meds that really didn't help -- was on Depakote for about 2 years but discontinued due to liver toxicity issues.

His LLMD's say treat the problem and not the symptom -- he has Lyme, babesia and bartonella.

I have given him IV Ativan every day for over 2 years now through his PICC line. He has 3 - 5 episodes daily -- some require 1/2 mg IV Ativan and others require 1 1/2 mg. If it is a 2 mg day he can function but 3 or 4 mg days are pretty much nightmares.

He has problems with aphasia, but it usually clears up within 15 - 30 minutes of the IV Ativan.

Hubby has what I call transient quadriplegia -- this is when his muscles freeze up and he can't move or even speak. This also resolves with the IV Ativan, but it is pretty scarey when I am sleeping soundly and wake up and find him like this or I leave for an hour or two to do errands and come home and find him passed out on the bed unable to move or even call for help.

My theory is that brain inflammation from the Lyme and whatever neurotoxins it creates causes these episodes. He is always worse when we try new antibiotics and treatments.

If these symptoms are only present occasionally I would suggest you try some of the supplements hubby takes. Especially the COQ10 and essential fatty acids to start.

See the list I recently posted in answer to the Multiple Diseases question at
http://flash.lymenet.org/ubb/Forum1/HTML/036654.html

Try to think about it and see if there may be some trigger for these episodes -- change in meds, hyperacusis (sound sensitivity -- ringing phone, knock on door etc), eating or drinking is a big one for hubby or just dropping off to sleep or just waking up.

Take care of yourself and hope to hear some good news from you soon.

Bea Seibert
 

Oh boy. Those seizures are a real pain in the rear! I had really bad seizures early this spring. Topamax seemed to make them worse since they weren't caused by epilepsy. The temp. paralysis was very, very scary for me.

They are almost gone now. I just have one once in a while when I herx really bad or switch to another antibiotic.

Please do not think you are doing anything wrong!! You must have a lot of inflammation going on right now. Are you having other herx symptoms? Are you doing anything to detox?

My LLMD says that seizures are Lyme until proven otherwise. He also says that it is important to treat the problem and not the symptoms. Hang in there. If you are having a really bad herx can you call your LLMD and ask if you should back off the antibiotics for a while?

I wish I had the answers for you.

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I don't know if I'm getting things good with detox. My brain has been pretty scambled lately and I can't remember too regularly. It feels like I don't know anything lately, and I should have an appt with a doc who would just pretend I'm a new lyme patient, and educated me abt everything I'm supposed to be doing.

I just restarted my meds after a 2 week detox break, and I'm still not ramped up to full concentration. In addition, LLMD's office said to stop mino for atleast 2 more weeks as they think as I was trying to ramp that back up, it may have caused this last bout of siezures.

Otherwise, I'm taking clinda iv 5 day/2xper, and zith iv 2days... been doing this protocal since april I think.

Take plenty of suppliment, and good abt taking them, mostly..get atleast one real dose per day, sometimes get all doses.

I don't know, I'm rambling... Just get so freaked out by siezure like stuff, and the function that I loose with it. Was up last night with severer low pelvic hip pain and leg cramps...and Saturday and sunday had been good. I hate the shifting and loss.
 

I can't imagine hubby trying to take 3 antibiotics at once. The most he has ever taken is 2 at a time and then not for very long. And he very rarely takes the recommended doses -- just can't tolerate the high doses.

I hope you take time to read the post/link listing hubby's supplements. Sometimes a combination of things is better than high doses of 1 or 2 things.

Don't know, but it could be you are taking too high of a dose of COQ10 -- you can have a blood or urine test done for lipid peroxides. I think even Quest labs or Lab Corp can do this. Lipid peroxides is the measure of the breakdown of fat (your brain is 50% fat) caused by free radicals. Test will tell you if you are getting enough antioxidants.

MetaMetrix can specifically test your COQ10 levels and they also do the lipid peroxide test.

Hope you can figure this out.

Bea Seibert
 

Seizures are a pain! I take keppra and klonopin for mine. I notice I get more when I am tired or when I am in crowded noisy places. But I am much better with the keppra and klonopin! I used to walk down the hall and just fall down or sit and dinner and jerk. Not pleasant. Have you tried keppra and klonopin? Hiker
 

I have taken benzatropine for tremor, but felt like it shut too much functioning of my body down while quieting the tremors.

I took klonipin some years ago..2 pills and then flushed it, it wasn't for me!

I definitely do better with herbs suppliments and homeopathy and IMT. I will be planning to order that new lyme book in the next few days.

Today was salvagable, and I hope tomorrow will be better. Thanks all!
 

Like you, I think the ups and downs are really difficult.

About a month ago, I had an incident of paralysis that started with an electrical current sort of feeling in my hands. That feeling spread over my whole body, and then I realized I couldn't move.

I could think and speak but I couldn't move. That's the first time I've ever had to be taken downstairs via stretcher and taken to the emergency room. It took about 4 hours for the paralysis to leave. During that time, the ER doc talked with my LLMD, and I was given two doses of Ativan.

The ER doctor termed this a "neurological episode."

I saw my LLMD Tuesday for the first time since that happened, and I asked her about it. Honestly, she said there's so much they don't yet know about Lyme Disease...so many things still to try and understand.

A day at a time, I guess. I certainly hope you feel better tomorrow; my thoughts will be with you.

Andie
 

Achey,

Jonathan Bleiweiss,M.D.(r.i.p.), himself having one or more TBDs, in his essay entitled,"When To Suspect Lyme," mentioned the term 'Pseudoseizures,' due to neuritis.

so, this is an avenue of investigation you might follow, as it would make a difference in the meds prescribed.

this is NOT to imply that you are NOT having true seizures.

On another note:

IMO,SPECULATION on CONTRIBUTING factors to seizures:

With lyme dis., and perhaps other TBDS, certain vitamins and minerals have the paradoxical effect of inducing, and/or worsening signs and symptoms.

these are: vit. C, B2,B6 which in lyme, have been implicated in causing a rise in levels of quinolinic acid, a natural neurotoxin.

vit. B3(not niacinamide) and Magnesium temporally cause a reduction in production of quinolinic acid.

i vaguely recall that zinc may be problematic, but i haven't had the time to track down the statement of an adverse effect of zinc w/rt lyme.

Personally, i've had these paradoxical effects.

months ago, when i took a calcium supplement containing a two-part Ca-to-one-part-Mg. ratio, i experienced what was either a seizure or pseudo-seizure. it was NOT severe. it was a truncal shudder involving head and, as best i recall one arm.
when i stopped the supplement, i did NOT have this recurr.

when i took the calcium supp. with a greater amount of magnesium sulfate(epsom's salt), the seizure-like truncal shudder did not occur.

i attribute this to a mag. deficit, fueled by the calcium intake.

this is my own interpretation, short of $10,000 of testing to "get at the bottom..."

ALL of these help me when I have recurrences.

Trout

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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info