I go to a LLMD and have been on various antibiotics and supplements for at least six months. This was after finding the engorged nymph tick and getting the rash and associated fever about 3 weeks after the tick was removed.
The tingling on the left side of my face (and a sensation near my left eye) comes and goes during the day, some days more often and other days less. My sense of balance has been partially impacted as well. I just finished a month of Metronidazole plus Clarithromycin and had virtually no basic change in the tingling and no herx at all. I have never had a herx reaction when changing between antibiotics.
I am wondering if the nerve damage causing minor balance issues and the tingling happened at the early stages of my infection. Could the tingling/balance issues be a result of OLD nerve damage that needs to heal, rather than an ONGOING infection (of perhaps my trigeminal nerve) ?
Perspective on these nerve related issues is welcomed. Thank you.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Any place that your body is vulnerable, Lyme seems to set up camp.
If you have old nerve damage, Lyme can aggravate it and make it worse.
My trigeminal nerve pain went crazy with Lyme. It's gotten better with time. I also have eye issues and face issues on my left side.
This is a very slow illness to heal sometimes, but there will be improvement.
Nerves also take a loooooooong time to heal even without Lyme.
Not everyone herxes. The rare times I have, it's been minimal, I think PMS is way worse for me.
Posts: 2839 | From California | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Theres a good chance it is lyme starting a bells palsy
If you dont address immediatly it can get worse and permanent
Normally steroids are contraindicated but the one person i know who fixed it took the 6 day prednisone pack that regular docs give and 400mg doxy for 6 weeks
He already had one permanent bells from under treatment and didnt want another
He went to er and they gave him prednisone and llmd gave him doxy
Does your llmd know what is goin on
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Are you on antibiotics now? I hope so. This is no time to stop treatment.
You don't say if the tingling started with the recent treatment or if you have had it since the tick bite.
That is what matters. If it just started recently, it could be as a result of the metronidazole. See p. 15 of Burrascano Guidelines.
But, if you have had this tingling for months, then it is just one of your typical lyme symptoms. Lyme causes these neuropathies in many, many people.
Burrascano recommends B vitamins to treat neuropathies and neurological symptoms. See page 28, #5 for details.
See p. 29 for other supplements and teas, etc. that you can take to help clear neurological symptoms.
posted
Hi, I thank each of you for your thoughts and comments.
"This is a very slow illness to heal" Yes that is what I have gathered. "one person i know who fixed it took the 6 day prednisone" My doc prescribed a week of Prednisone back in October when the tingling became evident along with Doxy and Valacyclovir HCL. I have taken 7 months of various antibiotics, plus supplements, and the LLMD has decided, to give my system a break for 7-8 weeks.
The tingling started very soon after the July bite in August 2013. As you note, I also believe it is one of my typical symptoms... I will continue with the B vitamins I have been taking along with curcumin. Besides B vitamins, has anyone tried NT Factor to repair nerve damage?
I went to (unfortunately) a non Lyme literate neurologist and they were not able to add much perspective. We did do a full brain MRI scan for nerve damage and found none.
I suppose I am trying to get perspective on IF this tingling symptom is a symptom of an ongoing progressive degradation of my nerves by the bacteria, or if the nerve degradation essentially happened early on in the infection, and now the nerves are not being degraded, but in a "recovery" stage.
Posts: 11 | From connecticut | Registered: Jul 2013
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quote:Originally posted by rockport: I just finished a month of Metronidazole plus Clarithromycin and had virtually no basic change in the tingling and no herx at all.
- Flagyl, right? It caused nerve pain for me, so I would say it could be affecting your nerves.
or this could be a herx
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"has anyone tried NT Factor to repair nerve damage?"
I've been taking ATP fuel which contains NT factor for the last couple months. I honestly haven't felt it's doing much. I just ran out today and am going to see how I do for week to see if anything changes.
My face pain is better, but that has to do with removing dental material that I'm allergic to. My neck and shoulder, however, just got HORRIBLE nerve pain a week ago which I didn't have before.
I went to my osteopath and some of my bones slipped out of place and are poking the nerves.
It may be worth it to see if something "mechanical" is going on that could be irritating the nerves too.
Posts: 2839 | From California | Registered: Jul 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
rockport, what is happening is neither of the alternatives that you are imagining.
If the lyme was continuing to progress, you would be getting MORE neuropathy (tingling, stabbing, twitching, etc.), more nervous system related symptoms, more trouble with brain function, etc.
I also would say that you don't have "nerve degredation."
What you have, instead, is an illness that affects the nervous system in various ways.
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (p. 4 of Burrascano)
So, the symptom comes and goes, comes and goes. Notice that it is staying the same, right?
I got a bilateral bells palsy from lyme years before I got diagnosed as having lyme disease. I thought my face was just drooping from getting older.
I had this facial drooping for 3 years. Then, one day I woke up and it was gone.
Remember, this was all before any lyme treatment.
So, lyme "attacks" a nerve and it doesn't work right all the time, it gives a tingling off and on, or a twitching. Or, it causes a semi-paralysis like my mild bilateral bells palsy.
At any time, your symptom could leave.
The B vitamins can help to speed that up. My lyme doc had me take sublingual (under the tongue) Vitamin B for some mild neuropathy that I had. It worked wonderfully.
Please don't obsess over these neurological symptoms. As long as you are not getting worse, that means that the antibiotic therapy has halted the progression of the disease.
With good treatment, you will notice no new symptoms and your current symptoms gradually reducing. This happens so gradually that we often don't even notice when some little thing goes away, or a big thing goes away very, very gradually.
I have not had lyme disease for over 8 1/2 years now. But, I have a bad lower back. The bad discs there can give me sciatic nerve pain if I strain my back. Then, I get tingling in my foot.
The pain management doctor says that the tingling can go away in a few weeks, or months, or take a whole year to go away. He told me it was nothing to worry about.
I think that this same prognosis could be given to you. Just so you are not getting worse, you should be positive and hopeful. These attitudes help you heal.
Worry and dwelling on the symptoms are actually bad for healing. The body interprets your thoughts as "don't fight the disease, give up, etc."
So, it pays to be optimistic and realistic and to cut off worry when you notice that you are doing it.
Another thing we have learned is that the first symptom to come is generally the last one to go. And, the last symptoms to come are the first to go.
This makes sense to me because I think the first nerve or organ, etc. to be attacked is the one that has been under attack the longest. So, it makes sense that it will be the last to get back to normal.
The last bodily system or nerve or organ to be attacked will be the quickest to get back to normal as it has not been attacked by the disease very long.
I hope you can be encouraged by this explanation of what lyme disease does to us.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
The point about dental is a good one The friend i talked about had a mouth full of mixed metals and root canals He had trouble responding to good lyme tx until he had the dental priblems fixed The second bells came after a dental procedure But like i said the short term pred and high dose doxy cured it
I think it is possible your quick meds held off bells and i just hope you get as much tx as you need so you dont get bells
If it is bad its very uncomfortable and after a ceetain time cant be cured
I hope you have a good llmd and they stay on top of this-yes lyme takes a long time...but this one piece needs the right tx now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Hello, It is certainly appreciated to read the very considered responses. Thank you. TF ... very astute recommendations ... My regards.
At some point, this odyssey with Lyme can be lonely. My story is minor but parallel to many. A healthy person gets Lyme and a whole range of myriad symptoms appear requiring one to take on a massive self education process... (at times rather stressful)... All this on top of doctors, meds and fatigue. Lymenet has created a place where complexity is embraced and simple messages of support feed our engagement with life. I will read more text of Burrascano, Dr.J, Dr.R, Buhner and Dr.H. Key words: health, neuropathy, balance.
On reading... I try to get text in PDF format or word format, and then one can use the Search or Find command to locate key words and key paragraphs.
Cheers to all...
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