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Old 05-29-2012, 03:19 AM   #1
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Lumbar Puncture helpful diagnosing neuro-Lyme??

Hi,
My neurologist thinks I should have Lumbar puncture to see if I have Lyme. Is Lumbar Puncture useful in this? My IgM levels are slightly elevated and I had an array of symptoms in Oct-Nov which have mostly cleared now. I had vertigo, tinnitus, visual problems, tachycardia, peripheral facial palsy which my neuro says is a classic symptom of neurological Lyme.
Right now I've got no symptoms.
I worry about the Lumbar puncture because I've had it six years ago and got the post headache, it was one of the worst things I've ever experienced and I swore I'll never go through the same again. I have Epilepsy which is well under control now, but my first lumbar puncture messed it up as well. In addition to that, I have Migraine. So I'm really worried!
What is your opinion, how "good" Lumbar puncture is revealing neurological Lyme? Should I go through it?

Thanks!

 
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Old 05-29-2012, 03:54 AM   #2
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Re: Lumbar Puncture helpful diagnosing neuro-Lyme??

NovMoon,

I would definitely stay away from a lumbar puncture! It's very painful, dangerous and completely unnecessary. Lyme is diagnosed by an LLMD (lyme specialist) primarily by clinical symptoms. A Neurologist is not the person to see to get this diagnosis. Any specialist, other than a lyme specialist, is not trained in proper diagnosis or treatment of Lyme Disease. Folks waste a lot of precious time going to these doctors and heeding their advise. In the meantime, the infection (if present) is growing ever stronger, which means it is also becoming more difficult to treat. Read the post on the top titled "Lyme Newbies". You need to try to find a Lyme Literate Medical Doctor soon and this is not always easy to do, depending on where you live. I hope you can persevere and find the help you need.

Jen

Also: the test you need should be done at one lab - Igenex in Palo Alto California

Last edited by jenj770; 05-29-2012 at 03:57 AM.

 
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Old 05-31-2012, 02:51 AM   #3
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Re: Lumbar Puncture helpful diagnosing neuro-Lyme??

Thank you for your advice, Jen!

I don't live in U.S. and there are very few (if any) Lyme literate doctors in my area, or country. It's mostly Neurologists who treat Lyme here.

I haven't had Western Blot, in which they test several lines. I don't know if they do it here.

I have had one follow up test which came back as "uncertain" and it tested VlsE (moderate reaction) OpsC (weak ie. not strong enough for positive). The dr had concluded "possible late immunity, no treatment required". Some doctors basically think the levels need to be clearly up that the treatment is needed.

I've seen 4 doctors, one said this is something else, two said possible late immunity, no action required, and the fourth one wants to find out.

They've taken IgG and IgM three times and it's confusing, since there result is always the same, IgM is slightly elevated, igG is normal. C-reactive protein under 8, ESR 3. I have had basic blood tests and they seem ok.

The confusing part is that my IgM has been up for six months, and since I had neurological symptoms in Oct/Nov my doctor wants me to have the Lumbar puncture now. He is also a MS doctor and thinks my symptoms are just as likely to be MS. I don't believe in having MS myself. And I really don't want to go through it, if it won't reveal anything, as it's risky, and it will cause pain and problems. I'm rather frustrated with the blood tests, but at least they don't cause any pain enough to mention!

Currently I'm having Sciatica type of pain, which I think is due to a work-related back problem and I'm taking NSAIDs for it. I suppose I need to postpone the puncture anyway, as it's scheduled less than two weeks from today and with this back, couldn't do it.

What do slightly elevated IgM and normal IgG sound to you? The levels have stayed the same for six months.
Can you explain what VlsE and Opsc in the follow up might mean? I was thinking if Rheumatic arthitis should be tested. I heard it can cause IgM go up, (but ESR would probably go up too?)

Thank you again for your help and have a nice day!



Quote:
Originally Posted by jenj770 View Post
NovMoon,

I would definitely stay away from a lumbar puncture! It's very painful, dangerous and completely unnecessary. Lyme is diagnosed by an LLMD (lyme specialist) primarily by clinical symptoms. A Neurologist is not the person to see to get this diagnosis. Any specialist, other than a lyme specialist, is not trained in proper diagnosis or treatment of Lyme Disease. Folks waste a lot of precious time going to these doctors and heeding their advise. In the meantime, the infection (if present) is growing ever stronger, which means it is also becoming more difficult to treat. Read the post on the top titled "Lyme Newbies". You need to try to find a Lyme Literate Medical Doctor soon and this is not always easy to do, depending on where you live. I hope you can persevere and find the help you need.

Jen

Also: the test you need should be done at one lab - Igenex in Palo Alto California

 
Old 05-31-2012, 04:13 AM   #4
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Re: Lumbar Puncture helpful diagnosing neuro-Lyme??

NovMoon,

I feel for you, and the many other people from outside the US who are having the same problem!

The reason why LLMDs go primarily by clinical symptoms is that tests are so unreliable when it comes to Lyme. Many people diagnosed with LD consistently test negative, even with the lumbar puncture. If this happens to you, you will still be "in the same boat" trying to get treatment. Right? You will have to decide if you want to take this chance.

I don't know what country you're from but many others have posted here from all over the world and some have found ways to get treatment, even with negative tests and uninformed docs. You might spend some time and try to locate those posts here. You could also print out relevant materials about lyme testing, treatment and such from some of the well-known lyme practitioners in the US and take them to the doc you feel is most open to actually reading them.

Also, a good many of us were also misdiagnosed with Lupus, MS, RA, CFS, mental deficiencies, etc.............. before getting proper treatment. Lymies have to learn to be their own advocate and not let ill-informed docs bamboozle them. Many who have had Lyme Disease for awhile actually know more about the disease than most non-LLMD docs! This is your body and your life. It really is important (and will serve you well) to become very knowledgeable about this disease. You might also try to find a Lyme support group in your area. We're here for you as well.

Jen

 
Old 05-31-2012, 09:16 AM   #5
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Re: Lumbar Puncture helpful diagnosing neuro-Lyme??

Thank you Jen!

Yes, I think it's better to gather all the information available now. I'll keep you all posted.

I've been diagnosed, I believe misdiagnosed as having MS in the past... one of these doctors wanted me to start medication for it. My symptoms didn't exactly fit, my history of symptoms didn't fit, and I said no and demanded more tests. This doctor, neurologist lost her temper.

The doctors have trouble understanding that if you spend a lot of time out in the nature, like I do, (and there are plenty of ticks where I live) the risk of a tick bite is considerable. They rather think of more complicated and rare conditions.

Thank you again for your advice Jen, I'll definitely search this forum and site and look for more information.



Quote:
Originally Posted by jenj770 View Post
NovMoon,

I feel for you, and the many other people from outside the US who are having the same problem!

The reason why LLMDs go primarily by clinical symptoms is that tests are so unreliable when it comes to Lyme. Many people diagnosed with LD consistently test negative, even with the lumbar puncture. If this happens to you, you will still be "in the same boat" trying to get treatment. Right? You will have to decide if you want to take this chance.

I don't know what country you're from but many others have posted here from all over the world and some have found ways to get treatment, even with negative tests and uninformed docs. You might spend some time and try to locate those posts here. You could also print out relevant materials about lyme testing, treatment and such from some of the well-known lyme practitioners in the US and take them to the doc you feel is most open to actually reading them.

Also, a good many of us were also misdiagnosed with Lupus, MS, RA, CFS, mental deficiencies, etc.............. before getting proper treatment. Lymies have to learn to be their own advocate and not let ill-informed docs bamboozle them. Many who have had Lyme Disease for awhile actually know more about the disease than most non-LLMD docs! This is your body and your life. It really is important (and will serve you well) to become very knowledgeable about this disease. You might also try to find a Lyme support group in your area. We're here for you as well.

Jen

 
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