posted
doctor's don't know enough about lyme to know whether my problems are from the lyme disease or from my spine issues.
I have couple herniated discs, one in my neck that is bad, and a slipped vertebrae at L5 that is getting worse, is now grade 2 or stage 2?
some of my symptoms are possibly from myelopathy, stenosis, pretty severe nerve impingement symptoms, I can't even walk very far anymore or my legs give out.
lyme disease dr thinks my antibiotics (rifampin, doxy, biaxin) are keeping the lyme at bay, so these symptoms might be from something else. the fevers, drenching sweats, and muscle twitching (myoclonus, dystonia, fasciculations) all went away with antibiotics, so whatever symptoms are left (back pain, radicular nerve symptoms, meningitis-like symptoms) might not be from the lyme or co-infections, and I need to rule out other things, especially spine issues because of all the findings on MRI. also he wants me to do plaquenuil or mepron next, but I have to go off either doxy or rifampin for that and I am worried about that.
one neurologist was stumped, did not think the symptoms were from my spine problems because the nerve conduction study EMG are negative, and has no idea what it is
other neurologist agree with first neurologist about spine and nerve symptoms, and thinks the symptoms are all lyme/coinfections and wants to treat more aggressively with IVIG
a neurosurgeon for my neck said that surgery won't help, if anything would only set me back. he thinks my symptoms are way more severe than what is on the MRIs.
orthopedic surgeon for the L5 thinks some of the symptoms are from my back, like not being able to walk, or to lift my leg in certain positions, like to get into the truck. the x-rays with flexed and extended look pretty bad with my lower back, and I probably will need surgery on that. but to try a brace and coxyc cushion and give that 6 weeks to see if its a flare-up and see if it goes away.
I have had the L5 thing a LONG time, over 20 years, and even back then was told I would need surgery some day. the past two months I feel like I am losing function, and I always said when I get to the point where I am in a wheel chair I will get the surgery. I cant walk more than short distances now, sometimes my legs just wont go anymore. but the pain feels like sacroiliitis.
i just dont know if its from the lyme or from my back. I can get 20, 30 opinions, but I know I am the one who will finally have to make the decision.
Posts: 615 | From maryland | Registered: Oct 2007
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bettyg
Unregistered
posted
ro, ; no knowledge on this one! i don't even know WHO to refer you to!
but try this ok!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Have you tried working with a really good physical therapist? If it is from the spine, it might be something you can actually help without surgery.
The problem is finding a good therapist. You don't want to go to a place that is basically a factory.
It's possible that it is your spine that is the root, but that the Lyme is making the symptoms worse.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I have started PT, and she has helped me a lot with some things, but I really cant do any PT. the place i go to a few people that work there or their children have lyme. After each appt, no matter what we do, I spike a fever the next day and have a huge pain flare that takes weeks to heal from
the first time I went it was my neck, so the second visit she didn't want me to do any exercises, so just did light massage and cranio-sacral therapy. I ended up getting VERY sick from that, fever, meningitis symptoms. the muscles must have stirred up something
the last time i went i just was doing pelvic tilt exerises and posture things for sitting, because i sit all day, and my lower back has been killing me ever since and I cannot sit at all now for more than a couple hours.
she thought my sx sound a lot like MS, but that they are the same as lyme. referred me to that neurologist, the one who is "lyme-friendly" who wants me to do the IVIG
I do think its true that I have pre-existing back problems and the lyme flares up and aggravate it from time to time. what I don't know is if the numbness, tingling, not being able to walk, etc, are from the lyme or from my spinal problems.
I haven't really sat down with my LLMD yet about this, I did tell him last time, and he said since I had such a drmatic improvement with the abx, it makes sense that those sx were the lyme, and these other sx, we need to have other things be ruled out. but now that I have been to all these appointments, I need to go back and tell him what they said and see what he thinks.
basically, there are things wrong in my spine, and they look pretty bad on the MRI. I have always had back-ache and sciatic pain, and some numbness-tingling in my right hand. I always knew I would need surgery some day.
now my pain and neuro things are much worse. I donmt know if my back had gotten worse and causing more neuro sx, or if the lyme is causing meningitis-encephalopathy-myelitis and that is whats making my sx worse. some dr's say my MRIs do not show much of a change. some say there is change, and the radiologist reports say each time that they look worse. so who do I trust?
Posts: 615 | From maryland | Registered: Oct 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Roro, I think I would try the Lyme treatment first and see if it helps. I might also try pt before I succumbed to surgery.
I would keep surgery as a last resort. The only way to rule out Lyme as causing the issue is to treat it further.
It's really conflicting of your doctor to say that the Lyme is too under control to be causing this, then to say you have too much Lyme to try IV abx.
I think I would get a second opinion from another LLMD.
It's my understanding that if you want the abx to penetrate the CNS, that you have to go on IV.
I did have my very real structural problems with my TMJ fixed. Lyme certainly took advantage of that bad joint. But the treatments I went through were non-invasive.
Good luck. I'm sorry you're going through all this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I just posted the following in a topic called "hyper reflexes". I had an EMG and a discogram which pinpointed the problem to the L5 nerve (so far herbals only, some improvement, but no surgery):
"soonermom:
Have had Lyme, etc., for about 15 years.
5 years ago, before diagnosis, a mainstream neurologist was so concerned about my hyper reflexes that he ordered a catscan of the brain. Of course he found nothing of interest.
I do know, from an EMG and a diskogram, that I have bilateral nerve damage of the L5 nerve.
Funny thing is that the L5 nerve is part of the peroneal nerve which feeds the outside of each lower leg including the knees.
The peroneal nerves travel down the legs separate from the sciatic nerve which is why in my case, I think, the thighs have no symptoms but the nerves feeding the knees and lower legs have been damaged. This is also why, I think, that the reflexes are hyper.
I think, in my case, the Lyme, etc., attacked the lower back at L5-S1, damaging the L5 nerve, which in turn causes the hyper reflexes. These are just my own theories which do, I think, make logical sense."
Posts: 175 | From Colorado | Registered: Feb 2007
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Dawnee
Unregistered
posted
I absolutly without a doubt think you should see a chiropractor. Not just ANY chiropractor either... you want to find one that is specialized in Upper Cervical care.
I have been seeing a Chiro. specialist for 2 months now and he truly does wonders. I know I would be in a LOT worse shape otherwise. I was skeptical about chiropractic..because of the thinking that they are all neck yanking back crackers. Not so ... find a chiro who fixes subluxations of the Spine with training in Upper Cervical adjustments.
Sorry if I sound like an advertisement! lol If you want PM me and let me know where you live and I'll ask mine if he can recommend someone in particular. (Mine actually teaches other chiros)
posted
I dont know about the chiropracter. Maybe that would help the subluxation in my neck (although I think it was caused by a chiropractor)
but in my lower back my disc is so narrowed that L5 is pretty much bone on bone with the one next to it. chiropractor may be able to move it back, but wont be able to grow back a disc.
but maybe i should have the chiropractor move it back first, so that if I do have to have fusion, it will be fused in the right position, instead of being fused slipped, if that makes any sense.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
Roro, I understand your PAIN & FRUSTRATION because I'm down (but not out anymore!) with two compression fractures at L4 & L5. I have another old fracture at T10 which makes me wonder about the this escalating back pain being written off as "fibro" pain.
I'm no stranger to pain after having 13 surgeries including a knee replacement. But back pain like this is new for me. I've just done the billion different doctor thing trying to get a diagnosis. Chiro, Ortho, Pain Clinic, FM docs (Internal Med), etc.
There is no pain radiating down my legs so the fractures are not causing nerve compression. The pain sure felt a lot like endometriosis pain so it confused me at first. It never hurt to cough or sneeze with endo plus my periods were not awful again like they used to be.
I can't walk very far either. The pain and spasms force me to SIT or LAY down. It's impossible to climb stairs or roll over in bed. My leg just won't cooperate especially the left one. I need help to climb into our van.
I'm wearing a California LSA brace which is a fancy name for a not-so-sexy velcro girdle. There's even more velcro to strap it all on and cinch it in to give support.
It won't stay on so my DH bungee-ed it on today after 2 attempts to add more velco failed. Using the bathroom with this thing on is impossible so it has to come off when I'm not upright. There's no way I can sleep in it either.
The brace does help with the pain considerably! When I'm not wearing it I can barely sit or stand. Bending over is all but impossible without the brace.
The only way to explain it is to compare it to my old belly binder that they used after a Cesearean birth. That made me feel like my guts weren't going to fall out. The brace makes me feel like I have some support or something to push against.
I had pre-existing Lyme, Babs & Bart with encephalopathy and was on Heparin, Rifampin, Malarone, Zithromax and Diflucan at the time of the fractures. I found out I had osteoporosis of the hip in August triggered by my low growth hormone status and started HGH in Sept.
Lyme seems to hit everyone differently or Zero in where we are weakest. Listen to your gut instinct and you won't go wrong.
Try running your symptoms through one of those online diagnosis checkers. You could have more than 1-2 things going on! Where is "House MD" when you need him? Oh, wait...he's IDSA so that's why he's off on a Fantasy Island Vacation!
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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; no knowledge on this one! i don't even know WHO to refer you to!
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