It's been 2 1/2 years since I've been here so I hope you're all well. I had a good run, not sure if my lyme is active again, thought I'd seek out your help.
I had severe Neurological lyme with seizures, myoclonus, you name it. I never recall nerve pain. The last eight weeks I am getting random nerve pain all over my body. It is sharp and feels like someone is stabbing me all over.
I've had one or two episodes of real bad left side flank pain. It was so bad the other night I almost went to the ER. I was doubled over in pain. I have a history of three cervical neck surgeries. I have seen my spine Dr. and he assures me this is not spine related.
I have also just been diagnosed with a cyst on my left ovary which appears benign. They want to reevaluate in four months.
I also have severe GI issues. Probably had all my life and the lyme made it worse.
Most of my lyme issues dissappeared after one full year on IV Rocephin and one full year on bicillin shots and oral antibiotics.
Your thoughts?? I really would appreciate hearing from anyone who experiences the nerve pain and what you do for treatment.
Barb
Posted by missing (Member # 22437) on :
Hi, I just typed a long story about my extreme nerve pain. It just got erased somehow.
I will re-type it later.
But , for now, I will say that controlling my nerve pain is difficult.
=====
My LLMD prescribed me Indicid.
I think that helps.
***edited out dosages***
[ 12-05-2010, 07:57 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
Hi sf!! Sorry to see that you are back with PAIN now.. ugh..
Any chance you were bitten again??
I don't have nerve pain except for sciatica.. thankfully it's been better lately. Nerve pain is awful, to say the least!
I hope you don't have to go back on treatment. Double ugh.
Posted by Shahbah (Member # 28735) on :
My major symptoms are nerve pain all over my body... I really hope it will go away with treatment, the only
Posted by Shahbah (Member # 28735) on :
soory, i was saying that the only thing that helps a bit is heat... but that's not a solution...
Posted by sfcharm (Member # 9392) on :
Up
Posted by jwall (Member # 22999) on :
Severe nerve pain here too. It is a nightmare. My Dr. put me on neurontin, but I'm too scared to increase it, so I'm on a tiny dose and it really isn't helping. I might as well be on nothing. I think if you go up high enough in dosage, it can really help nerve pain. I might be forced to go this route as the pain is just unbearable.
Posted by MDW005 (Member # 22706) on :
severe nerve pain here! from brain to feet. Not all at once, but face and brain are the worst for me. Nerve pain runs down my spine and spreads out.
Tumeric,magnesium,omega brite,and detox baths for me.
Posted by renny1985 (Member # 25222) on :
I also have severe nerve pain in my legs. I have yet to find anything that helps it.
Sfcharm- I am so sorry to hear your symptoms are re-emerging. I am not sure if it is Lyme or not- have you spoken to your LLMD? Is it possible you were bit again?
I have severe GI problems and just found out I have a cyst on my right ovary- hemorhaggic- seems benign but like yours needs to be followed. I am selfishly wondering if your treatment helped the GI problems? I feel so desperate to get rid of some of my symptoms but have not had succesful treatment yet.
I am wondering about your year of Rocephin and then bicillin shots and what Orals you took that your tummy tolerated?
Posted by sfcharm (Member # 9392) on :
My GI problems did not get any better while on antibiotics. If anything it was a long two years for my GI and bowels.
I did all the orals. Azith/flagyl/biaxin,mepron. Pretty much every one out there. I did bicillin shots a mega doses. All of my seizures, jerks, myoclonus disappeared. My shoulders used to shrug on their own. My arms would flap by my side. All these neuro symptoms are gone.
I'm a true believer in taking the antibiotics if they are working for you. If your symptoms are disappearing it's most definitely from the drugs.
I started out on orals for one year. I still had body jerks and myoclonus at the end of the year on orals. It was then that I decided to do the IV for a year. After that year all my symptoms were gone.
I am not sure what this nerve pain is all about since I never had it while being treated before. I have to exhaust all avenues to make sure it's not lyme.
I hate to blame everything on lyme!!
Posted by sixgoofykids (Member # 11141) on :
I had terrible left side pain. I used Pekana spleen remedy (along with the other two products they recommend to go with it) and it made it go away. That particular pain was toxin-related for me.
Posted by sfcharm (Member # 9392) on :
Saw a new primary Dr. today in Pa., He is ordering a Western Blot to see what my lyme titers look like. I was treated for lyme in 2006-2008 and have been well till two months ago.
I didn't even have to ask him to do this test. I was diagnosed on the West coast and think it's not as recognized out there as here on the east coast.
He also wants to have me followed up for M.S. as these stabbing nerve pain all over is a symptom of M.S.
In reading up on M.S. balance is also a symptom. I just this week mentioned to someone I thought I had balance issues.
Anyway my question to all is, has anyone here had lyme, treated it and then went on to be diagnosed with M.S.??
Posted by Shahbah (Member # 28735) on :
Hum, in my opinion untreated lyme leads to MS, so better take care of your lyme before it gets worse...
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