My constant complaint is my shaky, plugged in, over-reactive nervous system. It's VERY uncomfortable and is ALWAYS a symptom (of course, along with many others - but this is, by far, the worst). It's sometimes worse than others, but ALWAYS there.
I've been on abx and supps for 17 months, not much improvement. I am awaiting a Rife machine.
Those who know this symptom, did you ever get relief? How long did it take? What was the most helpful? Did you attribute this problem to Lyme, Babs, Bart, Ehrlichia, Mycoplasma??? (Yes, tested + for all).
I know, I know, we're all different...I'm just looking for some hope. I appreciate your input! TS
Posts: 566 | From West Coast | Registered: May 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Have you been on IV? It is usually the best way to treat those symptoms but others remained plagued with them. Are you taking lots of magnesium and high doses of B vitamins.
IM shots of b complex, B12 and magnesium really help in addition to your oral supplements.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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No, I have not gone the IV route...yet. I was going to give Rife a whirl for awhile; if I don't get anywhere there, then I suppose IV might have to be my next step. I've procrastinated being evaluated for IV, in hopes the orals, or now possibly Rife, would help me to progress.
Are you saying that some that have done IV, still are unable to find relief from the CNS stuff? My biggest fear is that it will never improve - that is beyond frightening to me. I truly don't think I could live like this for the remainder of my lifetime. Really the only thing (besides my kids) that keeps me going is remaining hopeful that I'll see improvement.
I am on oral mag and vit B. No IM shots though...what to do....thanks Abxnm. I always appreciate your input. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
CNS stuff is the worst. Most all lyme patients have problems with their CNS due to lyme, just in different forms.
My LLMD think it is more lyme, although he has said that parasites can do it too. I think babesia is one of them...
Posts: 458 | From Miss | Registered: Mar 2009
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posted
Pam Weintraub talks about this in Cure Unknown. She talks about Dr. B's recommendation to her that resolved her symptoms because it was the way he treated his own lyme and finally completed recovered so far to date.
If you are being seen by an LLMD, you may want to ask him/her about it. I think it was Ceftin pulsing and crashing three times.
I have this symptom too. It resolved for a few weeks and now is back. I hate it. I have also not done IV. I hear so many stories of people doing the month of two of IV that insurance will pay for and then just sliding back so I haven't taken the leap. But your 17 mos. (me only 2) of antibiotics and no resolution is making me reconsider.
Posts: 43 | From Upstate NY | Registered: Jul 2009
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posted
^^
Posts: 566 | From West Coast | Registered: May 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I have had terrible CNS symptoms for years, and gradually have been improving on what can be considered low-dose Ceftin (I am still ramping up my dose to get to a full one, due to harsh Herxing issues).
I no longer have been having ANY seizures (for 4 months now), very little anxiety campared to before, far fewer internal tremors and buzzing/vibrating/shaky feelings, far less light and sound sensitivity, no more insomnia, no more limb jerks, and less severe meningitis symptoms, among many other improvements.
I've been on Ceftin since May of last year. I've also had to make other changes in my lifstyle and eating habits that have greatly helped me to get better, but the Ceftin plays the starring role in my getting better.
However, I have detox measures that are a vital part of my treatment, that take a lot of stress off of my liver, kidneys and nervous system.
I'd be happy to go into more detail about what I have been doing if you are interested. I hope that you begin to feel some improvements soon - I know how frightening and miserable these symptoms can be.
posted
I've been on lyrica for neuropathy. Currently, I take gabapentin for neuropathy.
I find that the hypersensitivity, irritability is calmed down almost 100% by these medications.
In fact, those are some of the cues that help me to remember to take my gabapentin.
It makes sense.
Our nerves are hyper, on edge and the neuropathy med's are cns depressants.
They are meant to calm down the cns.
My first bout with lyme, I noticed improvement when they put me on depakote, another drug that works on the cns.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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