I am diagnosed with Lyme, Babesia, Bartonella and Ehrlichia. I believe I was infected for apprx 4 years prior to diagnosis. I have been on 500 mg Zithro for not quite 3 months, on an anti-viral as well, watching my diet, and on a bunch of supplements. I will be starting Mepron and Flagyl later this week.
I always read symptoms about pain (my neck is often unbearable), fatigue (yes, me too), numbness (I have this). My balance is sometimes off as well, which is annoying. But, my absolute worst symptom is my entire nervous system. My nerves CONSTANTLY feel plugged into an electrical outlet, almost vibrating. When it's really bad I tremor all over.
My questions:
1) Does anyone else relate to this?
2) Have you found any relief from this symptom, if so what worked for you?
3) Can orals be effective for this or is IV the only effective option?
I know I am early on in tx; but, this is so hard for me to tolerate. It causes my BP to be elevated as well, when I always had fairly low BP prior to Lyme and co-infections.
My LLMD seems to think it's caused more from the Babesia, which she will try to address with the Mepron. I have really been struggling with this symptom for 2 years, it's wearing me out.
Today is a bad day - just looking for some hope I guess. It becomes hard to fathom that I could ever feel even close to "normal" again. Thanks for input.
Posts: 566 | From West Coast | Registered: May 2008
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posted
My nerves used to flake out a bunch. I took Neurontin for it. Oddly, it also helped my head.
I did wean myself off it after 2 years though because it made my dizziness worse. And, since vertigo and fatigue are the main reasons I can't work, I was hoping I'd be better enough to work. Fortunately, my nerve pains & buzzing are more intermittent now, so I can manage to get through it.
I got the script originally from a neurologist. Not sure if your doc will be comfortable prescribing it or not. It's indicated for neuralgia, and I was taking a fairly high dose.
Posts: 168 | From Delaware | Registered: Aug 2005
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ByronSBell 2007
Unregistered
posted
I have this on the top of my head and several patients atthe clinic have this all over the body.
I hate to tell you but IV's are probly going to be necessary.
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I can completely relate. I have had nerve issues literally head to toe. Balance is off a lot, but I have also had horrible bouts of vertigo where the room just spins.
I have had LD, Bart, Ehrlichia (I do not have babesia Bartonella is usually responsible for nervous system symptoms and Lyme I have found)and I have viruses and not ever exactly sure what causes what symptom.
I have seen two LLMD's and both agree nervous system pain is the hardest to control...yeah, I know. They both have really zero'd in on the viruses, believing they are a HUGE cause of nerve symptoms.
The thing that has helped me the most is Xanax. I've tried Lyrica and it makes me feel weird, but I do take it around bedtime because it also makes me feel drowsy.
I have a very good pain management Md, because my pain has been intolerable - especailly my nerve pain.
It sounds like your protocol is good, adding Flagyl may likely get you a long way, I have yet to try Flagyl, although I should.
IV, I have wanted since day one, but LLMD's seem to go the oral route more and more, it is safer. I am on IM Bicillin w/oral Biaxin (similar to Zith only milder). Bicillin seems to help a lot of people.
Getting rid of the bacterias are a sure fire way to overcome the symptoms, but if you have viruses they can take some time and they can be very rough on the nervous system. I have taken an anti viral for 2 years and my titers are slowly coming down.
I no longer have Bart and that helps some, it creates a lot of CNS symptoms.
Another thing you may want to try that works for some is Nuerontin. Also, very low dose Elavil at bedtime helps some. But Xanax is the only thing that has helped most of my pain no matter what it is.
Methylcobalamin B12 (compound pharmacies only) injections are excellent for the nervous system, I have done them for 2 years as well. I stick with these shots because they can protect the nervous system from damage and help to heal it.
Hope you find some relief, I feel for you...this is not fun. Hang in there over time, you will start having more good days than bad, it takes time. I think we have all felt like you and just wondered WHEN is this is ever going to end.
My LLMD always reminds me, "This is a marathon, not a race". It is, but you will see results eventually.
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
i buzzed and vibrated almost constantly for 3 years. It gets better but it does take a lot of time. Sometimes getting in a warm epsom salt bath gave me relief for a while. I would be exhausted by the bath but at least I had a break from the buzz.
hope this helps, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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I had twitching, myoclonus, and shotting electrical pains.
I tried lyrica before (sorta like neurontin, but newer) and it helped for a couple days with the pain, but then at 5 days made me twitch worse.
the antibiotics, especially doxy seemed to help with mine. now that I have been on antibiotics since august last summer, my neurologist wanted me to try lyrica again.
this time i started at a very low dose 25mg and slowly built up. I am up to 100 mg twice a day and it is helping a lot. I was able to go down on the narcotic.
he is going to raise my dose further hoping I can go down even more on my morphine and vicodin.
I woudl try lyrica before neurontin, less side effects.
Posts: 615 | From maryland | Registered: Oct 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Tick--
Perty much Everyone goes threw what you are going threw --
Correct treatment will get rid of your symptoms - It takes time tho -
you have been sick a long time so there is no quick fixes --
When you start Babs treatment things will start to be better -
since you have Many Coinfections things are going to take much longer than you want -
With good Constant treatment you will get to feeling Much Better -
I got bit 20 yrs ago and started treatment 3 yrs ago- I feel Perty Good now- I have Lyme and Babs -
I was VERY sick -
Yes Many or Most people can get well using only Oral ABX and Herbs
Realize that you are going to get Much Sicker during treatment (Herx)
Everyone Herxes -- Yep Its Very Hard to go threw -
My worst herx Lasted 23 solid days - I had to squeeze my head the Whole Time- It helped lower the pain alittle-
I Got Zero sleep the whole 23 days-
You have to make up your mind that you are Willing to go threw Hell-O to get your life back -
Everyone here has gone threw pain that would make the toughest person cry --
You can get better - it takes Time -Good treatment- some Luck Alot of Pain -Money-- No way around it -
Hope this helps -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I'm sorry to hear how sick you guys have been too and happy to hear you've experienced improvement. It does help...knowing other people have been there and can relate to what I'm going through. It's such a hard thing to describe to someone that hasn't been through it themselves.
There are days where my neck pain may be better; but, like today, my nervous system just feels vibratory, heart palpitating etc. As I said, for me this is the absolute worst symptom I have. All I manage to do is lay around praying for it to all calm down - thanks for your understanding words - at least I know it's "normal" Lyme stuff.
I took Neurontin for about a month, way prior to my diagnosis, a duck thought maybe it would help. At least for me, it didn't make much of a difference. But back then, I was very acute and sick, sick...now I'm more ongoing, never-ending chronic.
Thanks tons for your responses. This is really the lifeline I need when I'm really struggling.
Posts: 566 | From West Coast | Registered: May 2008
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Dawnee
Unregistered
posted
Glad to know I'm not alone in that feeling too. I like the way you described it.. like being plugged into an electrical outlet! YES, that is what it feels like! I just started Zith. last month (didn't get to start on Doxy because of stomach issues) and even though I still have the nerve pain and issues, I have noticed that it is considerably better.
I still wake up with my whole body Hummmmmming but my hands don't seem to be quite so sensitive. For awhile I couldn't even wipe my hands on a paper towel, it was like turning the power up! So yes, it can get better on orals. How much better I don't know... I am hoping for IV or at least IM Bicillin because my CNS is just SHOT.
I've been humming and vibrating and buzzing and jerking for a couple years now.. the last 6 months being the absolute worst. But I think with a little more time it will all be very manageable.
I have had Lyme for 20 years according to my LLMD, and was re-infected in 2003. Just diagnosed this month.
I have Lyme, Mycoplasma and apparently Rocky Mountain Spotted Fever. My Bart and Babs test came back neg. but I'm not so sure on that. Dawn
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tailz
Unregistered
posted
My guess is you're electrosensitive like I am. See my signature.
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
You might want to try some craniosacral therapy for this. It helped me. There are several recent posts on it if you do a search.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I get the burning, twitching and sudden sharp stabbing pains in my muscles. As if someone took a sharp knife and stabbed me with it.
Does anyone else get cold patches on their thighs or inside of calfs but no place else? I get this and it feels like someone is pouring cold water on the inside of my thigh.
Then I will get goosebumps on the lower extremities and no place else on my body. The goosebumps actually hurt and my skin gets really sensitive. It hurts when anything touches it. The goosebumps actually feel as if I'm being stung by a thousand bees. ..literally.
I've had 7 EMG's and they all come back with no nerve impengement. The only thing that showed up is nerve degeneration at the C6-7 level. Along with left Ulnar neuropathy.
I told them that doesn't mean their isn't some form of neuropathy. Or nerve issue. They just blamed it on the Fibro. It drives me crazy though. Quacks! Posts: 109 | From San Antonio,Tx | Registered: May 2008
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