posted
I am a 43-year old father of 3 young children, a competitive distance runner for 29 years, very active outdoors. Diagnosed with Lymes and quickly treated with long-term antibiotics for in July 2003. Recovered quickly, no problems last 3.5 years. 6 months ago had mild c6 herniation, followed by t8. Pain/numbness started in left arm/hand, but now changed to include shooting pain and numbness in both hands, arms, legs, feet, jaw, around eyes, and tip of tongue. Trouble concentrating. Some vision problems. Metallic taste in mouth. I have had MRI's of neck and back, 2 EMG's, blood tests show normal sed level, IGG/IGM AB negative for Lymes. Local neurologist thinks it's the discs, but 2nd opinion orthopedist doesn't think disc bulges are the source...he suspects MS. I had an app't with a Lymes specialist (far away) last month but cancelled when neurologist said it was a disc problem. I have never had back or nerve problems previously. I can't sleep, my family life and work are suffering, feeling isolated and I don't know where to turn. Has anyone out there had similar problems and if so what did do? I am becoming more desperate by the day. Please and Thanks.
Posts: 212 | From Eastern CA | Registered: Apr 2007
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ByronSBell 2007
Unregistered
posted
I have heard of people with your problems related to lyme disease. I would maybe try calling and talking to a LLMD on the phone, it sounds like it could be lyme...
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
There is a lot of talk about Lyme and MS having a connection. Unfortunately a neurologist will very rarely diagnose Lyme. They diagnose MS........ that's what they know and that is what they do. They will rarely consider Lyme beyond a negative Lyme test.
On the other hand, a good LLMD will consider both. The difference being the LLMD knows a heck of a lot more about how to diagnose Lyme. It is not easy to find in the blood and the tests are just no good.
Several docs considered I might have MS, but I also had just as many symptoms that just DID NOT fit MS. Well these docs just said things like " well everyone has varying symptoms" or "maybe these symptoms are from other causes." ( no ****!! like maybe from lyme ........... i had a big ol' fat tick in my head!!!)
The LLMD said many of your symptoms could be MS, but many just do not fit MS. (And for Goodness sake I had an engorged deer tick in my head 3 months prior. the regular docs totally discounted the tick ---- whatever!!!).
So I stuck with the LLMD and I have been treating for Lyme. Better? Wish I was better than I am but At least I have parts of days with less/ little pain.
Here's the point .................... get to the LLMD. They will consider all possibilities. They really know how to rule in or out Lyme. And whatever you do ............ don't let them put you on steroids in the mean time. This can be disaterous in Lyme.
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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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If you had Lyme, it sounds like you still have Lyme. I had a 4 year remission as well and then it all came back with a vengance. Get to an LLMD and get treated.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
As Scott said, many Lyme patients relapse - unfortunately.
Another thing to consider is that most Lyme patients are coinfected with other tick-borne diseases such as Bartonella, Babesia, Ehrlichia/Anaplasma, Rocky Mountain Spotted Fever, etc.
It is possible you were treated correctly for Lyme, but that another coinfection has been replicating in the meantime.
Symptoms from one coinfection to the other often overlap, making diagnosis more challenging. Also, tests for coinfections are not always accurate, but if you can see a LLMD, you could at least get the testing process started for other tick-borne diseases.
I, like many Lyme patients, was initially misdiagnosed with MS, despite my finally remembering a suspicious bug bite and rash.
I have all the symptoms you describe and many more. I think many of us have the nerve-related symptoms you describe among others.
It is worth the trip and expense to see the LLMD.
The worst thing would be to get misdiagnosed with MS or another autoimmune diseases, get put on steroids which suppress the immune system, and then have Lyme/coinfections have a chance to take an even greater foothold.
There is a lot of Lyme in California, despite what mainstream doctors think.
If you'd like, there are a group of us at CaliforniaLyme, which is a Yahoo group, and you might find others who live near you for support.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Sorry to hear of your problems which are similar to mine except that my main herniated disk is at L5-S1. I was not officially diagnosed with Lyme until about 1 month ago:
Aug, 1992 - 1st Lyme infection, but diagnosed with pneumonia, and treated with various Abx. Recovered to 90%.
Aug, 1993 - Another infection -treated with strong Rocephin injection.
Dec, 1994 - chronic Lyme set in for good. Lost 80-90% of my health.
In 2006 was diagnosed with severe lumbar disk degeneration at L5-S1 by head of Neurosurgery at Johns Hopkins who still wants to replace that disk. Haven't proceeded with surgery because I think Lyme infection at L5-S1 is the main problem.
PLEASE DO NOT CONSIDER AN ESI PROCEDURE (which is the first choice of most Drs.). My experience (and I have read many other experiences here) is that an epidural steroid injection will escalate existing Lyme infection to a horrible level. 3 years ago, before I diagnosed Lyme disease, an ESI escalated my pain symptoms from 4-5 to 8-9. From my reading, the ESI suppresses the immune system to the point that the Lyme infection runs rampant.
One of the main points of evidence for me that my problem is Lyme disease is that herniated disks in the lumbar should suppress the knee-jerk reflex. My reflexes are hyper, not suppressed. In my reading hyper-reflexia can be caused by Lyme disease or Primary Lateral Sclerosis (there is at least 1 member I know here who has this diagnosis).
Above all, please do not consider an ESI.
Posts: 175 | From Colorado | Registered: Feb 2007
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posted
Your post touched me deeply, I'm at the same place that you are. I was in remission about the same amount of time and now have the same symptoms that you describe. I hate laying in bed at night with my arms going numb at the shoulders, the pin prickles and muscle twitches . . it is like torture. And the marriage thing . . .not wanting to be a burden, not always feeling like you are being believed by your spouse, being sick of feeling sick, and scared, and wanting to just get some answers. Lyme is a LONELY disease, and without effective treatments, it is a lonely, scary, devastating disease. I would suggest taking 1,000 mg of Biaxin each day and see if after a month your symptoms subside. Mine subsided after ONE day of Biaxin. I just know I have a strain of lyme that is sensitive to this drug, so at least I have the own mental reassurance that this really is lyme (or some infection) that I have that responds to antibiotics. Some people react well to amoxycillin, some to a Z-pack, so you really out to see your LLMD and get treatment going again. If you respond to treatment like you did last time, you don't have to wonder, you DO have lyme. I believe you are having a relapse, because we sound almost identical in our symptoms. If you ever want to talk, I'm here. You may feel totally alone there, but here is someone who really understands what you are going to. I also hate not being able to think or even talk like I used to, the neuro symptoms of lyme are devastating. Time for you to see an LLMD, get symptom relief, and start LIVING again!!!! XOXO - from a cyber buddy who sends some love to my alter-ego!
Posts: 69 | From Washington | Registered: Jan 2007
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posted
One last thing, I'm almost the same age, and also have three young children. I do understand your unspoken feelings, I'm going through this same thing right now.
Posts: 69 | From Washington | Registered: Jan 2007
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Lyme in '94, treated with doxy and completely symptom free within 2 months.
Fast forward to 2006 and suddenly hit with neuro Lyme stuff, just like yours. Hands going to sleep at night, tingling sensations throughout body (especially around the ears), dizziness, confusion, etc.
I was on doxy for 3 months with some progress but went off before symptom free and it all came back, and I'm now on my 3rd month of azithromycin and slowly getting better.
I have the same question you have - can lyme go into remission (in my case for 10 years) and suddenly come back? In most peoples cases I have heard about, when it comes back it is almost always neuro/chronic Lyme (when I had it in '94 it was arthritic Lyme).
By the way, I'm a 44 year old father of 4 boys.....so I've upped you one there!
Posts: 41 | From Somerset County, New Jersey | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear local man,
Yes, lyme can go into remission for many years!
Just like syphillis, another spirocheteal disease.
And then, it can emerge again, especially in times of stress or injury. That happened to me, and many folks here on lymenet.
The good news is that with treatment you can get better. I am in my tenth month of antibiotics (oral) and finally beginning to feel much better.
You need to see an llmd for several reasons others have already mentioned. Most importantly, few doctors are educated about tick borne diseases. Also, ticks can carry several diseases, such as babeosis and bartonella and others.
I only began to get better after an llmd started treating me for lyme co-infections as well.
good luck and keep in touch! hope you get treatment soon.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I too am going through a major relapse after nearly four years of feeling much better.
I injured a disc in yoga class back in November. In January I took two 5-day courses of oral Prednisone. In February I got a cortisone injection in L4-L5.
The Prednisone and Cortisone were a BIG MISTAKE. In March I began to relapse with Lyme and possible coinfections.
No matter how much you feel the Lyme is gone, I WOULD NOT take steroids in any form. You may end up in the same place I am now - with the disc problems AND with a recurrance of Lyme (this time much worse than the first, and I was on IV 17 months that time)
All the best,
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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posted
Thanks very much to all who have responded so far. It really helps with the feeling of isolation. I'm now wondering if a cortisone injection to my rotator cuff several months ago plays into this...I also just now bailed on a prednisone rx for disc probs after a few doses when I read about possible connection to lyme relapse. I am trying to get into see a good llmd, soonest I can get is a month (and 400 miles) away, not sure I'll make it. The shooting-shocking pains are getting worse, especially in face, trying to manage the associated anxiety...after being in control all my life now I think I know what insanity must feel like. Anyway, thanks again for all the great replies, if anyone has specific info on which tests I should fight for, or further llmd's on west coast, I'd appreciate that too. Sincerely, LocalMan
Posts: 212 | From Eastern CA | Registered: Apr 2007
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posted
I am 31 years old and have relasped several times.
I am a mother of six young kids and also have a spinal fusion from T9-L5 and was supposed to go further but they felt they were risking paralisis. My disk below L5 is bulging, but after having two back surgeries and living in a body cast and a wheel chair for four months then having to learn how to walk again...I decided no more surgeries.
After research on my own, I figured the numbness/tingling and the horrible pain in my legs and arms were still infact due to my back, but it was the Lyme attacking the weakend part of my back.
I feel for you. I really do. I have six kids ages 1-7years and there are days I can't even make it to the bathroom and I feel they are taking care of me instead of me taking care of them.
It's hard mentally because I am a go-getter and a doer. I'm not one that feels like I should have to depend on someone just to help me make it to the bathroom. And I wonder if this is how I feel at 31, what will I feel like in ten years. It's quite scary.
I am still untreated from my relaspe and will continue until a LLMD that takes insurance is in my area. I don't have too many options when I was 6 kiddos that depend on me.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Local Man,
Good that you've put the steroids on hold. It's pretty likely that is what's triggered your relapse.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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