They are rather enjoyable but I am hoping this is not a sign I am getting worse.

Pooch

My seizures unfortunately are called a 'general' seizure disorder meaning - the docs have no idea how i could seize so much and so often!

quote:

---

Originally posted by Lisa in Arizona:
Hi Pooch,

I was wondering if you have gotten any relief from your neuropathy and if you could send me the name of the neuropathy doctor you went to back east. Also, one more question for you: have you had any spine or neck MRIs and how were they-did this influence your neuropathy?

---

I went through what seemed like 50 blood tests, an MRI of my spine --three of them -- EMGs, and other tests. They all showed nothing! The neurologist was very nice and not at all dismissive of Lyme disease, but he did not seem to have any further clues or suggestions to alleviate the neuropathy.

My best relief has come from taking Gabitril, which my LLMD prescribed, and wearing special shoes, called z-coil, which reduced the pressure on my feet tremendously. I tried wearing my formerly most comfy shoes last week --Mephistos --and I could barely make it one block before unrelenting throbbing pain set in. With the z-coils I can go literally for miles.

Pooch

If your visual effects persist even when you close your eyes, you will know that whatever it is, it is happening in the brain rather than in the eyes.

I had these migraine auras for many years before having an actual migraine headache, so the two do not always go together.

I have also experienced the bed shaking feeling. I always think it's an earthquake, and then I realize it's me. I think the sensation is internal versus my body actually shaking and moving the bed.

My MRI did show I have many lesions in my frontal, parietal, and temporal lobes. I also have hypoperfusion, according to a SPECT scan. So it could be that the lesions create a little hiccup. But I would have thought the symptoms would lessen and not increase over time.

Have you tried magnesium in vitamin/mineral IV's? It really helps with neuropathy and buzzing sensations and may even quiet some of the visual hallucinations. It makes a significant difference for me and I now do it weekly. Adding glutathione into the mix at the end also is very very helpful. Some of this could be neurotoxin induced.

You also might consider hyperbaric oxygen, as you have the means to get a home chamber--you could try out a chamber either in NY (I have one) or in San Francisco (a friend has one about an hour away) and if it helps, you'd know. I think its tremendously helpful.

And Jen I am also thinking my babesia isn't gone, it was starting to be under control and the seizure activity seemed to lessen but now alot of babesia symptoms (night sweats, chills, etc) are back also.

And Jen, I have started magnesium and have been more diligent about preventing yeast. I hope I have some good results soon.

Lisa, I agree--I do feel Lyme causes us to react differently to drugs, especially those that go into the central nervous system. I can't take sleeping aids like Ambien because it sometimes causes me to go into a sleep walking amnesiac state. I take Gabitril occasionally for my neuropathy but only at night.

In spite of these visions, I do feel I am much, much better. I am working and getting about, no longer fearful or full of anxiety. I am basically very happy these days, counting my blessings, but taking nothing for granted.

I had a period of over a year when I stopped going anywhere that I had to walk alot.
My husband couldn't understand why I never would go to the stores. I was in such pain.

Take care, Carol

quote:

---

Originally posted by Poochini:
Does anyone have temporal lobe seizures or simple partial seizures associated with Lyme? If so, can you describe what they are like? I'm having more and more episodes of weird visual symptoms -- colors becoming more vivid and pulsating as if electrified, patterns becoming distorted, and so on.

They are rather enjoyable but I am hoping this is not a sign I am getting worse.

Pooch

---

Carol,
The above link will take you to store locations for z-coil shoes in Pennsylvannia. Also go to z-coil.com to see what the shoes and styles are, the technology behind it. I do recommend that you try on the shoes and get them custom-fitted. Meaning, don't simply order off the internet. The sizes don't always correspond to what you wear in a regular shoe. They can also adjust the arch support and degree of tension in the coil.

I have the sandal, a running shoe (for walking), and a hiking boot. The sandal makes people think I am wearing a very extreme fashion sandal made in Japan or something. They are so cool that a NY designer who saw me wearing them now wants to have all her models wear them for their next runway show in New York during Fashion Week. Not bad for orthopedic shoes! I think they cost about $165, so more expensive than most shoes, but not outrageous for what they are. Hey, it's cheaper than am electric scooter, which was what I was considering at one time.

My most comfortable shoes before z-coils used to be Mephistos. I tried wearing them the other day, and it felt like stiff blocks. My feet were in terrible pain within a block of walking.

Panther, thanks for the suggestion of B12. I get that tested and it is normal. However, my mercury levels have been above normal.

Pooch

They are a little strange looking, but if the fashion models are photographed wearing them, they might even become stylish.

Carol

It works.

IV Mg is also given to stop status asthmaticus. An immediate life threatening asthma attack.

It works.

Since the likelihood of actually getting the amt. of Mg you need is an immpossiblity, at the least try to get IM shots of Mg a few times a week. Take a LITTLE B6 or a B complex before you get the shot.