posted
I am suffering from many maladies the most problematic being uveitis (inflammation of the eyes. I have been taking steroids, which I have now learned is not the thing to do if you have Lyme, but with the eye problem my choices were limited. I was diagnosed with Lyme 5 yrs ago. On abx for 2 weeks - and I describe my life as before and after Lyme.
After what seems like "running the gauntlet of medical professionals" - and after seeing 3 neuros - the latest one will be doing a spinal tap on Friday.
I have been through a lot and I am not sure why - but this test scares me to death. Any advise would be greatly appreciated. Any list of things I should ask them to look for??
I am still on steroids (5mg) a day. From what I have read will the steroids mask any evidence of Lyme???? I certainly don't want to do this twice.
Thanks for any info you can share.
Posts: 10 | From Philadelphia | Registered: Nov 2006
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Cobweb
Unregistered
posted
I personally refused a spinal tap and proud of it! Ordered by both my Primary and Neuro. Not only was I scared sh!tless, I didn't think it would further any diagnosis process.
Now if my LLMD wants one I might consider-she is the only doctor I trust, but she doesn't think one is necessary-and neither do I.
posted
Am I wrong in my thinking - if someone would put me on abx - and the present symptoms cleared, then wouldn't that indicate a strong possibility of Lyme. Without doing a spinal tap.
I have not tested positive - but was diagnosed 5 yrs ago - and abx clear up symptoms immediately.
Now symptoms have persisted for a year and no-one wants to put me on abx because I have not tested positive for Lyme. So I am on steroids and altho it clears my eyes - the rest of me is getting worse.
Posts: 10 | From Philadelphia | Registered: Nov 2006
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posted
I had one and while I didn't enjoy the process it wasn't as bad as I expected. (I even had natural childbirth because I was afraid of the epidural)
My insurance neuro asked for the spinal to rule out everything else. She said it would be unlikely to find Lyme but if we did that would be absolute proof. But she was using it to rule out all other causes of my nerve problems.
In my case it worked and was a piece of the evidence she used to give me a clinical dx of Lyme over the ID saying I didn't have it because I only have 4 + and 5 IND and 1 + and 2 IND (all those INDs!)
I would say it depends on what they are expecting.
Make sure you do lay flat for a long time after, I didn't get the headache but I laid flat for hours afer.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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quote:Originally posted by Visual Afterimage Man: Steriods = BAD for Lymies.
This could be the reason you are feeling worse.
Steriods = Great for Uveitis
I could feel bad or I could be blind. I already have permanent damage to one eye and hoping not to have the same thing happen to the other. Not much of a choice here.
Posts: 10 | From Philadelphia | Registered: Nov 2006
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Carol B
Unregistered
posted
quote:Originally posted by lucy96734: (I even had natural childbirth because I was afraid of the epidural)
Well, My first child was natural-my second child I BEGGED for an epidural as soon as I entered the hospital. Half hour later I was asking if I could order pizza during delivery! (I named the baby Digourno or however you spell it) The rest were adopted! Carol B
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posted
When I first started presenting symptoms my neurologist did a spinal tap.
I knew it was going to be painful, but I had NO warning about the possibility of a spinal headache after. I had an especially bad one due to the effects of compression fractures I had in my 2 of my lumbar years ago - couldn't relieve pain, eat, sleep for 5 days.
If this happens to you, DON'T let them tell you to wait for 5 days before getting a blood patch. Unnecessary torture, if you ask me, after 3 days tops.
There's some thought that drinking a TON of caffeine can help prevent this; something to keep in mind. I'd have a triple espresso waiting for me as I left the room if I did it again.
If you're going to get this done, I would make sure they're testing your CSF for everything they can so as to avoid ever having to do it again.
They tested mine for signs of MS, but I didn't know at the time to ask them to look for lyme-related things.
I've recently learned there are a lot of questions about how much spinal taps should be depended on as a diagnostic tool for lyme or MS. I used to have the links to this info saved but my computer died I'll try to find them and send them your way.
On the other hand, it IS possible that the knowledge you may gain from having this done will outweigh the possible pain of it.
As for your eye problems, I know that lyme can cause many eye problems that can be reversed with treatment. Perhaps getting properly treated for lyme would take care of these problems for you?
Do you have an LLMD? I would advise getting one if not, and seeing what he/she has to say about this.
Posts: 106 | From Michigan | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi NotEZ. I can't imagine how frightening it must be to lose your vision, even temporarily.
My thought is that your uveitis is from lyme disease.
My other thought is that we already KNOW you had lyme, and we already KNOW you were undertreated.
Wish you'd listed some other symptoms, but I wouldn't be surprised if they were consistent with late lyme.
The spinal tap itself is not too bad. You might get lucky and have it show lyme but odds are not good. I presume your doctor wants it as an investigatory tool, i.e., to look for MS signs, etc.? Regardless of findings, keep in mind lyme and MS findings on a tap are nearly indistinguishable from one another. Even oligoclonal banding.
I hope you can find a good LLMD since I'm thinking that's what you need more than anything. I see a PICC line in your future, and treatment, and a return to good health and vision.
Here's some lyme and uveitis research links. Note that the lyme uveitis people improved with IV ceftriaxone!
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I had a LP a month ago. It was done by a neuro. Make sure you are not being "tapped" by an intern or resident, but by someone with experience.
You must remain lying down for 4 hours after the test.
I had no trouble, just mild discomfort during the procedure.
Personally I don't think the test will prove or disprove anything. It is unlikely anything related to Lyme will show up. Also elevated IgG can be attributed to Lyme, not just MS.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I have posted about this before but can;t remember where.
Anyway, I had a lumbar puncture by the neurologist that diagnosed me, years ago. She was doing a rule out dignosis and it did rule out MS.
All that said, I wouldn't do it again in a million years.
Please don't have one if you can find any way around it.
The demerol they gave me made me happy but the LP still hurt and then fluid leaked for 2 days while they had to give me steriods and rocephin to try and stop it. It stopped short of having a blood patch.
I was an extra 10 days in the hospital with the worst blow your nose off your face headache imaginable. Migraines are a party by comparision. I never want to go there again.
I know some people have LPs and have no problems and if you do have to have one I hope that's how it goes but don't go there if you can get out of it.
Sorry to be this down on the whole thing but it really sucked.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
You must understand the uveitis whether it is related to Lyme or not is a very serious ocular inflammatory disease and is the third leading preventable cause of blindness in the world today.
Steroids are the first drug of choice to reduce the inflammation quickly without permanent eye damage. Steroids should not be used long term to treat uveitis even if the cause is not Lyme disease.
Uveitis is an autoimmune disease which is sometimes known as idiopathic which means one will most likely not know the cause. Spinal taps and MRI testing are often done to look for MS related uveitis and other autoimmune disorders that affect the eye.
Spinal taps are a generally a safe procedure, you should ask for a blood patch and you may develop a post spinal headache which can be very severe. You should not lift anything heavy for at least one week following the spinal and you should lie flat for several hours afterward. You need to be under the care of an opthamologist that is specially trained in uveitis.
If you are looking for a specialist in your area please PM me and I will e-mail you the name of a physician close to your area. Most opthamologists do not and I repeat do not have training in treating severe cases of uveitis and it appears from your posting that you have pretty bad case.
Posts: 75 | Registered: Aug 2003
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