hshbmom
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Update: These 2 tests were done in February. The SPECT was normal, although I haven't seen the official report.
***Please see my question about the neuropsych results at the bottom of this update.
The neuropsych testing "didn't show anything terribly wrong. Unremarkable findings"
General intellectual level is lower than expected.
IQ is 81, 80 90-110 is average; IQ can be brought up because women's IQs grow for a longer time period than men; needs more "exposure"
All scores were in the 80's & 90's
Memory was good, except auditory memory was lower than expected.
Some problems with attention & concentration, and cognitive speed & attention
Sharp at non-verbal things, such as problem solving
Low average level of sophistication & knowledge, but these will improve as she "goes back to school and is exposed to things" ******** I think my daughter has lost IQ points. They don't have a baseline for comparison. They must think I keep my daughter in a cave.
The examiner interviewed her before the testing. He kept needling her, asking her why she didn't go to school. He intimidated her so much that she just shut down and gave up. I don't think he believes Lyme can cause such pain that she has had to stay out of school.
What they don't realize is that she couldn't identify various objects because of her word finding problems. She couldn't think of the names of things quickly, so just told the examiners, "I don't know." She should have said..."I can't remember the name, but I know what it is."
Word finding ability...the examiners didn't notice any problems; they stated, "She's being careless & trying to rush through things if she has word finding problems." I think they interpreted her poor results as a lack of exposure, rather than a lack of recall.
It appears that the seizure-like movement disorder is going away. Yeah!
Her pain level has not changed...it's still terrible. I've got to find a new pain doctor for her. The old one has given up on her.
**Is there enough information in this neuropsych report to get an IEP, rather than just the 504?
************************ I'm glad to be finally getting somewhere.
My teenage daughter continues to have a seizure-like movement disorder that she developed after a tick bite & rash. She's had no improvement since beginning oral antibiotic therapy.
In fact, she has been getting worse. She's been in an increased amount of pain since before Christmas. She started Lyrica, but it hasn't kicked in yet. She's to start Lamictal soon.
Her LLMD said if she had a PET or SPECT scan, they would probably find "gross abnormalities". He said movement disorders are very common with Lyme disease.
I'm not thrilled to hear his opinion of the possible extent of damage, but I am glad she's going to be tested. I hope the results support the subtle changes I've noticed, but find difficult to communicate to my daughter's neurologist and other members of her health care team and homebound teacher.
I pray insurance will pay the bulk of this testing; I've heard it's pretty expensive.
My daughter was recently diagnosed with Bartonella. This infection likely complicated her response to Lyme treatment.
[ 30. May 2008, 06:19 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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timaca
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Good luck to you and your daughter. I had neuropsych testing and spect scan done at Columbia University Medical Center (Dr. F).
The spect scan did show moderate global hypoperfusion consistent with lyme.
I did have decreased small motor function (part of the neuropsych test).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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hshbmom
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Hi Timaca, thanks for writing.
Can you tell me more about what is involved with the neuropsych testing? Do you have any good links with specific information about it?
Did you have any problems getting insurance to pay for this?
[ 30. May 2008, 06:14 PM: Message edited by: hshbmom ]
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Geneal
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I am glad to hear you are moving forward with your daughter.
I have bc/bs and they paid for my nuclear stress test, but had to have pre-approval.
The cardiologist's office handled this and all I paid was a co-payment.
Good luck. My LLMD thinks I have bart too. Currently treating babs. It's like musical chairs some days.
Let us know how your daughter does.
Sending you prayers and positive thoughts.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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timaca
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hshbmom~ There may be some info about neuropsych testing at www.columbia-lyme.org. I think there is good info there (including a slide show) about brain spects.
The testing was done over 2 days and was quite extensive. It ranged from filling out questionaires, to listening to stories and repeating back everything I could remember, to looking at photos and stating back everything I could remember, to picking up small pieces of metal (that's what I didn't do too well on--loss of fine motor function due to lyme); to solving puzzles, to trying to remember things in a sequence, etc. Some of it was very challenging. And with a lyme brain, some of it was nearly impossible. However, the doctor giving the test was very encouraging and supportive, so it was a good experience....although draining.
The brain spect involved eating no chocolate or caffeine for 24 hr prior to the test, having a dye injected into me (or something injected into me) then lying in a machine that is similar to an MRI machine.
My insurance paid for everything, but first I had to make it clear that the neuropsych testing was for a lyme disease evaluation (a medical condition) and not a mental health condition (which is what the doctor wrote the diagnosis code as).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I had neuropsych testing done, over 2 days. The results truly astonished me. I knew I had cognitive problems but was shocked at some of my very low scores. It also determined other problems that I did not know were an issue..such as little feeling in fingers and toes. I had gotten used to numbness and/or shooting pains, didn't know how much damage was truly done.
The neuropshcy test was good for me to hav. It made me realize I WAS ill, it was not all in my head (well, actually it was! ha) and it also got me disability insurance.
My best wishes to you and your daughter.
Posts: 190 | From BC Canada | Registered: Jul 2004
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After the testing you had, what did Dr. F do for you? Any medicine to help with your evaluation?
I want my daughter tested there and I am currently trying to get her in so your info was helpful.
My daughter is 14 and is having a hard time concentrating for school work. She is depressed and has anxiety due to lyme so I wanted to go have her tested at the best lyme neuro.
Was it worth going there or is it the same going to any place for neuro testing. I want to go there because he specializes in lyme, right?
Thanks, Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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timaca
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Hi lyme4~ Dr. C (Dr. F's colleague) did the neuropsych testing on me over 2 days. She is delightful.
I also spent 2 hours with Dr. F going over my health history. I don't know if this is part of the evaluation that your daughter will be doing or not. After talking with me for 2 hours, he had the lab take 16 tubes of blood from me, and he also ordered a brain spect.
At the time he saw me he said that on a scale of 1-10 with 10 being absolutely positive I had lyme, he put me at an 8. I probably had lyme. He said he would speak with me in a month after the results of my blood work was done.
A month later we had a phone consult going over the neuropsych testing, the lab results and the brain spect. At that point in time he concluded that lyme was the likely cause of my illness (due to the highly suggestive western blots--not CDC positive however) and the abnormal brain spect. All other labs were normal.
He recommended IV antibiotics due to CNS involvement. (a 6 week course).
He does not follow for treatments, just makes recommendations.
I asked who should follow me for treatments, and have ended up with his recommendation as my treating LLMD. I ended up on IV antibiotics for much longer than 6 weeks. It did help.
I went to Columbia for the "Lyme Disease Evaluation." That included the neuropsych testing and time with Dr. F.
If you are just going for the neuropsych testing you may or may not see Dr. F. You might clarify exacting what you will be getting and who will be testing your daughter.
If either Dr. C or Dr. F is in charge, then you will be getting top notch medical care for lyme. It was by God's grace I stumbled across his web-site in my search for Lyme disease answers. Simply do a google search on Dr. F and lyme and you will see he is a well published, balanced medical doctor. Thank God he knows his stuff and is doing research to help us!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Your info was helpful. I saw him speak at Dr. J hearing and I knew then thats what I want for my daughter.
She goes to Dr J and is on IV rocephin. She was undiagnosed for 11 years. She is 14. She had the brain spect and mri at M Hospital in CT and it showed white leisons on her left frontal and it also showed a prior infection in that area.
She has been sick for so many years and no dr could find out what was wrong until Dr J.
She has been on many oral abx too since last summer.
She never had her period before IV but after 4 weeks to the exact day of IV she got her period. Her hair is thicker and growing. Alot of her symptoms have gotten better. But her brain is not really. She still has a hard time concentrating and I want Dr. F to examine her.
She is highly depressed due to lyme and just started Prozac three days ago.
I am in the process of trying to get her in with him but its hard to reach them. I did speak to that dr you stated and she was suppose to get back to me but has not as of yet, maybe its the snow storm.
My daughter also had an unknown infection in her body that came out after starting IV. Iv basically has helped her so much. If she wasnt on IV I wonder what would have happened. She had these pimples on her legs for over a year before finding out she had lyme. Then after 8 weeks on IV these pimples grew into hard balls and when drained and cultured it came back as Klebsiella octova. Every year she would get pneumonia and I wonder since her immune system was so low, her white blood count was 14,000, she barely collapsed one day. The hospital said she was probably anerexic because she could not eat. These dr's over the years couldn't even help, they just want to label it anything they want. Just because she wouldn't eat they thought they knew what she had. How wrong were they. She was SICK, thats why. You should see her now eating!!!They couldn't even help until Dr. J. He is saving her life.
I am happy for you that iv helped. I appreciate your info and I pray I can get her in with Dr. F. I worry about this infection in her brain. The report stated it does not know what it is but I hope she will get better.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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timaca
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Lyme4~ Dr. C and Dr. F are incredibly busy, and occasionally out of town, so it can take awhile for them (Dr. C in your case) to return a phone call. My suggestion would be to call once a week (maybe even twice!) until they get back to you (being very polite of course).
I'm glad you got to hear Dr. F speak. He is incredibly knowledgeble. On his website he has (or at least had the last time I looked) a slide presentation on brain spects and lyme. It is very informative (if you can follow it--some of it was beyond my comprehension!)
How long has your daughter been on IV? It took 4 1/2 MONTHS of IV antibiotics before I felt like I was back in the land of the living again. The picc line was pulled at 6 1/2 months due to a fungal infection in the line.
I am glad that your daughter is seeing some improvements. I wish her complete healing. Feel free to private message me. Keep me posted.
Timaca
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sometimesdilly
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adding one thing to Timaca's excellent info about the lyme evaluation -neuro-psych testing at Columbia .-
it is the in the only neuropysch test in the US that specifically includes knowledge of what lyme does to the brain.
one of the beauties of the test is that it can assess if/how much/what part of mental difficulties are likely attributable to lyme, and if/what part/how much of problems relate to depression or other mental health issues.
Dr. C always does the neuro-testing-- and she is fabuously compassionate-- and Dr F always looks over the results. If you do the full lyme eval, you will get Dr. F for sure. He has one assistant, but beyond that, unless they've added on, that's it for the team.
They don't have any adminitrative help, and yes, they are incredibly difficult to reach. but absolutely worth the wait.
dilly
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CaliforniaLyme
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One of the LLMDs associates seizure disorders with Babesiosis so I would make sure she is treated for that!!! Also Ehrlichiosis/Anaplasmosis can cause seizures-
Sorry to hear it has been so hard!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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hshbmom
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