Has anyone tested CSF for Lyme?

[kos_mom]

DD 19, in addition to anxiwty, agoraphobia and mild OCD/phobias has been experiencing increasing leg, knee, hip, back pain for a year and a half. Many suggestions from medical personnel that could be a somataform disorder, but I kept pursuing possible medical angle using whatever hook I could. Finally, two weeks ago Dr. T said absolutely certain that something organic going on and, further, he was concerned. So grateful for that after all the dismissive doctors. Then a neurosurgeon she saw later that weak said problem not in her spine, "more global" than that. DD has what he calls spasticity and hyperreflexia--she can hardly walk a block and sometimes can barely get up stairs--this has gotten progressively much worse in last six months. Like Dr. T, neurosurgeon suggested possible MS (but brain scans inconsistent with that dx so probably not), lyme, or some other infection--maybe viral. Both recommended spinal tap.

 

While I am desperately hunting down competent neurologist to do spinal tap (we have Dr. l appt on October 2, but if an infection is going on don't want to wait that long to test), I am wondering about the lyme. DD has tested negatie for lyme three times--I believe one was Igenex. I know many on this board still go with lyme based on clinical picture. If one can test for lyme in cerebral spinal fluid (CSF) through a spinal tap, why do I not hear of anyone on this board testing for lyme that way? It would seem to be a more definitive test for lyme than a blood test. Or are the CSF lyme tests subject to all the same controversy as the blood tests?

[momcap]

DD 19, in addition to anxiwty, agoraphobia and mild OCD/phobias has been experiencing increasing leg, knee, hip, back pain for a year and a half. Many suggestions from medical personnel that could be a somataform disorder, but I kept pursuing possible medical angle using whatever hook I could. Finally, two weeks ago Dr. T said absolutely certain that something organic going on and, further, he was concerned. So grateful for that after all the dismissive doctors. Then a neurosurgeon she saw later that weak said problem not in her spine, "more global" than that. DD has what he calls spasticity and hyperreflexia--she can hardly walk a block and sometimes can barely get up stairs--this has gotten progressively much worse in last six months. Like Dr. T, neurosurgeon suggested possible MS (but brain scans inconsistent with that dx so probably not), lyme, or some other infection--maybe viral. Both recommended spinal tap.

 

While I am desperately hunting down competent neurologist to do spinal tap (we have Dr. l appt on October 2, but if an infection is going on don't want to wait that long to test), I am wondering about the lyme. DD has tested negatie for lyme three times--I believe one was Igenex. I know many on this board still go with lyme based on clinical picture. If one can test for lyme in cerebral spinal fluid (CSF) through a spinal tap, why do I not hear of anyone on this board testing for lyme that way? It would seem to be a more definitive test for lyme than a blood test. Or are the CSF lyme tests subject to all the same controversy as the blood tests?

 

This is just my opinion, but I think the problem with testing a sample (blood, urine, CFS) directly for the lyme spirochete, rather than testing for antibody response, is that you have to actually catch the lyme spirochete in the sample that is drawn. It`s like the proverbial needle in a haystack. However, some are having success with the Advanced Laboratories blood test, which cultures borrelia from a blood sample. I think you can find it here: http://www.advanced-lab.com/

 

I like the idea of these more direct tests because it proves active, current infection at the time the sample is drawn. But like I said, you have to actually catch it in your sample. So there would definitely be false negatives still. From what I`ve read about the testing, there are certain times of day that borrelia is more likely to be actively travelling around in the blood. Not sure if that would apply to CFS or not.

[LNN]

As Momcap said, testing CSF is as inconclusive as testing the blood - needle in a hay stack. Plus subjecting a child to a lumbar puncture is no easy decision, as those who've done the IVIG study can attest. Lots of risks/expense/trauma for a test that doesn't yield reliable results.

 

If you haven't read it yet, I highly recommend Cure Unknown by Pam Weintraub. She gets into the tests and shortcomings and political backstory. It really helped me understand the landscape and become more comfortable with the idea of testing based on clinical symptoms.

 

If your other options are treating a disease with no cure (MS) or taking meds to alleviate symptoms without addressing the "why" of how a 19 year old develops joint and muscle pains and can no longer climb stairs, if it's inexcusable to have a doc blame the patient (somotaform? really?) because they can't admit they don't know something...or visiting with an integrative doctor familiar with lyme, I know which option I'd go with.

 

Read Cure Unknown - I think you'll see your DD in the book and go OMG! I'd definitely read it before scheduling a tap.

[kos_mom]

LLM,

 

Just looked at book on Amazon--looks interesting and I'll order. That said, the one thing I've never wanted her to have was lyme as am not sure after dealing with all kinds of medical/psych probelms with DD over last five years I have the fortitude to wade into s dx laden with such controversy. But there have been more than several times in the past when I've thought I just can't deal with one more thing and of course after a good night's sleep or two I do.

 

I do feel we need to do the spinal tap to rule out or in other dxes like MS, reactivated varicella , CMV etc. DD is showing no signs of squeamishness about a spinal tap (ignorance is bliss!) but it definitely is a test one only wants to do once. That said, she has become very de-motivated on finding out what's going on--the neurosurgeon gave her a prescription a week ago for baclofen, which is used to treat spasticity in MS patients. What an amazing medication! I gave it to her the first night and the next morning and she was able to walk two hours that day. My sister, who is an RN and has a PhD in public health, points out that this reaction is not a very good sign. Also, it does not help pain much. But it's made DD functional enough that she's not quite seeing the point that it's important to find a cause for her symptoms.

 

The somataform thing is interesting--her pediatrician (as well as her therapist) clearly thought something along those lines and, afraid of feeding somataform thoughts, reluctantly referred DD to orthopedist three times over nine months(I questioned whether this was the right referral the third time). I definitely saw ortho's eyes rolling as well--he refused to so much as suggest advil for pain. After nine months the orthopedist finally prescribed physical therapy but refused her a TENS machine prescription which at the physical therapist brought her a few hours of relief. Then DD ended up in hospital with pneumonia. When they saw how badly she walked, they brought in neurology. The team decided to do a spinal MRI based on not how badly she walked, her pain complaints, or anything else like that, but rather because her reflexes were "brisk." The spinal MRI came back fine and the attending suggested it was perhaps somataform. Have gotten many somataform suggestions with DD--doctors run one set of tests, see nothing wrong, and suggest somataform because she also has anxiety. But all the literature is clear--this is a dx of exclusion and should not be given until everything else has been ruled out. This is not real life though, and I now very politely say I am willing to accept a somataform dx, but only after everything else has been excluded. Since that is what the literature says the doctors have no choice but to agree I am absolutely right.

 

DD's pain continued so I took her to a physiatrist, who asked to see the MRI. He spotted an abnormality on the thoracic spine and called the hospital radiologists to make them change the report. That got us to a neurosurgeon to review the results (two and a half months later). Her brisk reflexes were now hypreflexive and the neurosurgeon pronounced himself puzzled, referring her for a brain scan,a neurology consult, and another neurosurgeon specialized in the spine. And so we ended up two weeks ago with Dr. T and and the second neurosurgeon. The S word is no longer mentioned--Dr. T, no doubt informed by his own LeRoy experience, says he is now beginning to doubt there really is such a thing as a somataform disorder. Again, it is the reflexes that have been key--her hyperreflexia is now to the point where no one can miss it. When they hit her knee with the hammer at her most recent exames she literally jumped up in her seat. Apparently, there is no way to fake a reflex response or psychogenically induce it, so somehow the somataform disorder dx has finally after a year and a half fallen by the wayside.

[bulldog24]

Lyme is not easily found in CSF. SKIP IT. I think its only found in about 3% of ACUTE Lyme patients. If your child has been on antibiotics, forget it. It will almost definitely be negative. When Lyme meets the abx, Lyme bacteria take off, and retreat. Lyme is (PCR or antibodies for that matter) hard to find in blood. Its SOOOO hard to find in CSF. I dont think this is a valuable way to go. Its not a fun test either.

[kos_mom]

And she has been on clindamycine for strep. Darn! We lucked into a Wednesday appointment with Dr. L, so we'll see what she says. I am guessing she'll say spinal tap if only for the MS angle, particularly as DD has been so responsive to med used in MS patients, although it's possible she'll go for less intrusive nerve conduction studies first.