LymeNet Flash: spinal tap vs. blood results

This is topic spinal tap vs. blood results in forum Medical Questions at LymeNet Flash.

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Posted by ready to go (Member # 3958) on :

A neurologist that my husband went to preformed a spinal tap which he told us came back positive for Lymes disease. Unfortunately they did not draw all the bloodwork that day so he had to have more blood drawn. When we called for the results, we were told that the blood tests were negative for LYmes ( let me add that he was Dx with Lymes about 6 years ago, treated with 6 weeks Rocephin, and has still had problems but no one will say it is LYmes) ANy way, we have an appt. next month, and I still believe has has Lymes. ANY SUGGESTIONS ON WHAT TO SAY TO THIS DOCTOR?? i HAD SUCH HOPE!

READY TO GO

Posted by Monica (Member # 224) on :

Sorry, but I don't think I know what's going on here.

Your husband has the Lyme disease. He was diagnosed with a spinal tap, not blood work.

Why would both need to be positive?

Was he on Rocephin after this? And the insurance would only approve 6 months?

Are you going back to the doctor because he is still sick? I hope you are not going to any of the doctors he has seen in the past, because obviously THEY ARE CLUELESS.

You need to get him to an LLMD.

Posted by treepatrol (Member # 4117) on :

It did not get all killed off. Went into cyst & bleb forms to escape abx's and now all his antigens are tied up fighting the disease attached to spirochetes, thats why none in blood. Bang him for a week at 4000mg's of amoxicilin and do the wb blood test and three day urine test from Igenex lab.

Posted by Lymetoo (Member # 743) on :

LYME disease is insidious. It does not go away easily. Six weeks of Rocephin will usually result in a relapse, especially if it was not followed up with oral antibiotics.[abx for short]

If your husband's spinal fluid showed Lyme then he definitely has it. A spinal tap is often negative for Lyme, so if it came up + then you can bet he has it.

Blood tests for lyme are almost as bad at finding Lyme as the spinal taps are. Lyme is a clinical diagnosis, which means the dr needs to go by symptoms more than by test results in order to diagnose.

I hope you will go over to "Seeking a Doctor" and find an LLMD for your husband. He needs immediate treatment, as Lyme does not go away on its own.

Your homework is provided in the links below! I hope you will spend time becoming informed about Lyme. I'm very sorry your husband is ill, and I know how difficult all this is for both of you.

Welcome!

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

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oops!
Lymetutu

Posted by ready to go (Member # 3958) on :

Thanks to those that replied to my spinal tap dilema! Alittle background info: Once he was dx, he was put on Doxycycline which didn't help because I believe he already had the Lymes for awhile. Went to a Rheumatologist due to the arthritic symptoms who only looked at the bloodwork which was , we were told (+), and he tried to explain to use why it was (-). Did every test under the sun and didn't find anything but still wouldn't believe it was LYmes. Went to a LLMD in Pa. that I had found on here that others went to. He treated him with the Rocephin but only 6 weeks. I tried for more but he said if it dind't work the first time it wouldn't work a second. (I found out later from the nurse that it may have been more of an insurance problem! Anyway, he did have him on many antibiotics. He did send his blood and urine to Igenex and told us he was highly positive. For some reason though, he gave up on us. Just kept giving us the impression that he didn't know what else to do. We saw other rheumatologists after that---bad idea . We gave up for awhile , even though I knew by his syptoms that he had Lymes, especially since it was the only thing that ever came back as positive. I met this neurologist and questioned his nurse practitioner on whether or not it was worth our time( I was ready to head to CT to find a doctor) She said if he didn't know what to do he would find us a doc. That is when he did a complete neuro work up and ruled out other causes. Did the spinal tap and I think we were all excited--how ever so right or wrong that may seem. I believe he may treat him but might try oral antibiotics. I really do not think they will help at this point . I would like the IV again. I need to prove my theory! The only thing I succeded in is getting his primary doc to put him on Elavil. It made him functional. ANy other suggestions would be appreciated. I hope to write a book someday.

Posted by Lymetoo (Member # 743) on :

Hi Ready! I took the liberty of reposting this so others can read it. Most of us here don't do well trying to read large blocks of print. I wasn't sure you knew how to edit.....so here goes!

-----------------------------------------
Thanks to those that replied to my spinal tap dilema! Alittle background info: Once he was dx, he was put on Doxycycline which didn't help because I believe he already had the Lyme for awhile.

Went to a Rheumatologist due to the arthritic symptoms who only looked at the bloodwork which was , we were told (+), and he tried to explain to use why it was (-).

Did every test under the sun and didn't find anything but still wouldn't believe it was LYme. Went to a LLMD in Pa. that I had found on here that others went to.

He treated him with the Rocephin but only 6 weeks. I tried for more but he said if it dind't work the first time it wouldn't work a second.

(I found out later from the nurse that it may have been more of an insurance problem!

Anyway, he did have him on many antibiotics. He did send his blood and urine to Igenex and told us he was highly positive.

For some reason though, he gave up on us. Just kept giving us the impression that he didn't know what else to do.

We saw other rheumatologists after that---bad idea . We gave up for awhile , even though I knew by his syptoms that he had Lyme, especially since it was the only thing that ever came back as positive.

I met this neurologist and questioned his nurse practitioner on whether or not it was worth our time( I was ready to head to CT to find a doctor)

She said if he didn't know what to do he would find us a doc. That is when he did a complete neuro work up and ruled out other causes.

Did the spinal tap and I think we were all excited--how ever so right or wrong that may seem. I believe he may treat him but might try oral antibiotics.

I really do not think they will help at this point . I would like the IV again.

I need to prove my theory! The only thing I succeded in is getting his primary doc to put him on Elavil.

It made him functional. ANy other suggestions would be appreciated. I hope to write a book someday.

Posted by Lymetoo (Member # 743) on :

Good idea about the book!

WEll, my suggestion is for you to ask around and find another LLMD who does use IV. I don't really think IV is the only answer, however.

When you get suggestions of drs, be sure to get info from SEVERAL happy satisfied "customers!" Don't listen to one or two people.

You definitely need a seasoned LLMD who will not give up on your husband!

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oops!
Lymetutu

Posted by ready to go (Member # 3958) on :

Thanks Lymetoo! I hope to get the hang of this!

Posted by NP40 (Member # 6711) on :

Six years ago he was diagnosed with lyme, and they gave him 6 weeks of IV's ?

My son was diagnosed 6 months ago and he's on his 3rd month of IV's !

Time to find an LLMD.