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» LymeNet Flash » Questions and Discussion » Medical Questions » What am I doing wrong ? How do I get this off my Central Nervous System ?

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Author Topic: What am I doing wrong ? How do I get this off my Central Nervous System ?
lymetwister
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So, the steroids worked for about a week, but then just a week on full dose Mepron, Arteminsinin, Z-max, and IV Rocephin through me into another wall.

Started with feeling confused and outside myself. Then the shortness of breath, tremors, severe autonomic dysfunction, and crazy brain damage feelings all set in along with emotional lability which has all been very severe.

I'm weaning off the Steroids now as I can pretty safely rule out severe inflammation causing this.

I'm loading up on Benzos and Narcotics to keep the CNS stimulation down, but it is only short lived with multiple flares throughout the day.

I'm trying to detox detox detox as much as I possibly can.

Still taking care of my kids myself and my parents won't shut up about seeing a Psychiatrist and getting counseling. I describe the CNS stuff like someone who just got hit with mustard gas. The brain damage feeling like someone who ate lead paint.

My folks are telling me I can't get outside myself and need severe Psychiatric care. Like I can even sit and talk to someone while I'm just gasping for air.

I'm obviously hitting the Babs. Terrible night sweats that soak my pillow each and every night, but not below the neck.

I think my parents are about done with me. It's come down to emails from them now and they won't answer their phone to talk to me. Besides my kids, they are all I have. I'm being told this is their senior years, which I am apparently ruining with my illness.

My LLMD can't get me comfortable. Don't remember being this bad for a long time.

Any suggestions besides 86'ing the Steroids ?

Posts: 1227 | From District of Columbia | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
tickssuck
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Sheesh, I'm right there with ya as far as the hyped-up, crazy CNS stuff, just awful.


If you figure it out...pls let me know! Sigh. I'm sorry I don't have ideas, as I'm struggling (still) too; 3 1/2 years since treatment started. Just to let you know, you're not alone. TS

Posts: 566 | From West Coast | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Gary,

Personally I am not so sure discontinuing the steroids is the way to go -- maybe a decrease in dose, but too many changes too fast will just confuse your brain and body even more.

Here is an article you might want to read. It seems to me like you are having problems with your HPA axis -- but don't ask me how to fix it. Hubby is having problems as well but his manifests in different symptoms.

http://tinyurl.com/43egror

So sorry for your lack of family support. I know that makes things even harder to deal with. And no I don't think you are crazy. Talk therapy will not do much to fix a physical problem and for hubby at least psychotropic meds just caused more side effects and didn't improve symptoms or make him feel better.

I personally still think you have brain inflammation. The problem is that steroids do not necessarily help with the brain as well as they do in other parts of the body.

I think what I would do in your situation is go back on the rocephin and after a week or so try adding back low dose babs meds -- not the full cocktail. Low and slow is what got hubby to the point where he could tolerate the higher more aggressive doses.

The other possibility that is not being addressed is bartonella. If you are killing babesia then if those red blood cells are also infected with bartonella that infection is also now active and is not being treated with your current meds.

If you have not done so then I suggest getting routine bloodwork -- a metabolic panel and a CBC. You need to be monitoring those at least every 2 or 3 weeks. Some docs even do it weekly while on IV's.

Take care.

Bea Seibert

P.S. Are you still taking lumbrokinase or boluke? If so, what is your dose.

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sutherngrl
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I also have the CNS stimulation feeling. And even though I have improved a great deal Lyme wise, the over stimulation feeling is still there. Taking an antipsychotic and an antidepressant has helped a lot. Not so much with the depression, but it has calmed my CNS down alot.
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Emmee
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Ask your doctor about methylfolate. It is methylized folic acid that goes past the blood/brain barrier and straight into the brain to protect the nerves in there. I started with 7.5 mg every 12 hours. After 1 week it had built up enough that I now take 7.5 mg every 24 hours. No side effects that I know of.
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Emmee
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I have found that the stimulation feeling is coming through my senses. My ears are the worst for me. The lyme has damaged my mucous membranes and I have trouble staying hydrated. My ears are not producing wax to protect the membranes inside. I wear earplugs when I can tell that sound is hurting me. I have begun to put Coconut Oil in my ears to keep the membranes lubricated and sooth the nevers underneath. Sound is carried through the bones in the head as well as the ear canal and eardrum so I do things to minimize the impact of sound. No attending loud weddings for me anymore. I have also started taking GABA which is a natural supplement. GABA is usually produced by our own bodies and according to a research paper I found at acnp.org GABA and glycine are "arguable the most important inhibitory neurotransmitters in the brain, and brainstem/spinal cord, respectively." I try one thing at a time to see if it will help. Next I will add glycine.
Posts: 11 | From California | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
   

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