posted
We just picked up our neurologist's reports to take with us for my wife's LLMD appointment on the 19th. He feels she has conversion disorder which means that her symptoms are all in her head and anxiety related. He also does not understand why we are going to a Lyme specialist after his blood test and spinal tap came back negative.
We also got the results from her blood test and spinal tap for Lyme: ABS CSF Lyme = less than 0.6
CSF Oligoclonal = No Bands Identified CSF IGG = 3.7 CSF Albumin = 27.7 Serum IGG = 1210 Serum Albumin = 4
If anyone knows what these values mean I would appreciate a lesson I realize they apparently show a negative for Lyme.....
posted
The lesson is that it's a waste of time to go to this neuro for help with a tickborne disease. How does your wife feel about this diagnosis?!
Maybe someone else can help you with the technical info. You might be interested in seeing the medical journal abstract pasted below, done by Johns Hopkins people who are not known for their lyme literacy. Even they say that lyme is a clinical diagnosis and the tests are flawed. And I should point out that they were dealing with acute cases, not chronic cases where the tests are even less helpful.
____________________________________________
J Clin Microbiol. 2005 Oct;43(10):5080-4.
Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease.
Division of Medical Microbiology, Department of Pathology, The Johns Hopkins University School of Medicine, 720 Rutland Avenue, Ross 624, Baltimore, MD 21205.
Lyme disease is usually diagnosed and treated based on clinical manifestations. However, laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies. Although cultivation of Borrelia burgdorferi is definitive, prior investigations have shown that no single test is optimal for Lyme disease diagnosis. We applied high-volume blood culture, skin biopsy culture, PCR, and serodiagnosis to a cohort of patients with suspected Lyme disease acquired in Maryland and southern Pennsylvania. The study was performed to confirm the relative utility of culture and to identify laboratory testing algorithms that will supplement clinical diagnosis. Overall, 30 of 86 patients (35%) were culture positive, whereas an additional 15 of 84 (18%) were seropositive only (51% total sero- and culture positive), and PCR on skin biopsy identified 4 additional patients who were neither culture nor seropositive. Among 49 laboratory test-positive patients, the highest sensitivity (100%) for diagnosis was obtained when culture, skin PCR, and serologic tests were used, although serologic testing with skin PCR was almost as sensitive (92%). Plasma PCR was infrequently positive and provided no additional diagnostic value. Although culture is definitive and has a relatively high sensitivity, the results required a mean of 3.5 weeks to recovery. The combination of acute-phase serology and skin PCR was 75% sensitive, offering a practical and relatively rapid alternative for confirming clinical impression. The full battery of tests could be useful for patients with confusing clinical signs or for providing strong laboratory support for clinical studies of Lyme disease.
PMID: 16207966 [PubMed - in process]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Wife was very upset about that...we know this is not in her head. Too many neuro symptoms as well as joint and muscle pain. She has almost all the symptoms you can list. Thanks for the clinical info you posted!!
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Conversion disorders are very, very rare. I think that neurologist is way off base making that assumption. It isn't even within his field of expertise. Who is he to tell you what you should or shouldn't do. Run the other way as fast as you can. Then, if your wife is diagnosed with a tick-borne disease and gets better with meds, send the neurologist a letter to describe what has occurred. Education is the key. These idiots will simply not learn until they see it through their own eyes.
Conversion Disorder is just another one of those "dumping ground" diagnoses people get when they really have Lyme. The list is long ... CFS, fibro, hormones, depression, etc etc. Wonder why he didn't give her one of those?
Tell your wife to stand strong. She will prevail.
Posts: 2276 | From NC | Registered: Oct 2000
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If your LLMD appoint. does yield Lyme then I will be writing letters to the ducks that doubted.
She has been given the diagnosis of Fibro, chronic fatigue, depression and Raynauds by her Rheumatologist. He has been great and supports our decision to go to a LLMD. He will be our local Dr. contact for our LLMD.
The 19th is just around the corner!!
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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posted
The spinal tap was also to rule out MS...can't wait to get to the LLMD!!
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
SO glad you're taking her to an LLMD. I wasted time with a neuro also. If I'd taken his advice I'd still be sitting around with an MS label while the bacteria in my head continued to multiply and grow, "treating" my neuroborreliosis only with RX headache meds. Whole lotta freaking good THAT would do.
Despite faxing him my CDC positive IGeneX Western Blots, he continues to pretend I don't have Lyme. He claims my EM rash was likely an "allergic reaction" to the tick bite. He claims my episodes of getting lost in my own neighborhood are "seizures."
He is quite an amazing neurologist. Even his own staff whispers to me conspiratorially "He will never admit he is wrong."
I don't bother seeing him any more for follow-up appointments but I do continue to worry about all the other potential Lyme patients in my area that he will misdiagnose.
Good luck to you and your wife. Please let us know how she does. A pox on your duck and his "conversion disorder" rubbish!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
"cgooge", I can't begin to tell you how many of us have been there. "CONVERSION DISORDER" I'm going to repeat what Lymetoo said: "GRRR!" When I just read your post it made my skin crawl. Once you have a conversion disorder in your med. records it just seems to follow from doc. to doc. I'm not telling you this to be negative, I'm telling you so if this does happen you will be prepared to keep on fighting. (17 doctors I have gone through & still fighting,even with a POSTIVE ELISA & WESTERN BLOT) "PLEASE" do not take this "DUMPING GROUND " excuse for an answer!!!!!!!!!!!!!!!!! "Peace be with us all", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
OMG Cgooge,,, that is a new one on me.... what will they think of next???? So many new Ilnesses!!!! think about it...what is causing all of this... look deep .....deep into my eyes...
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
I am leaving Tuesday for my appointment on the 19th in MO. This will be my 2nd visit.
Small world.
Good luck. M
Posts: 106 | From Texas | Registered: Jun 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Tell your wife to hang in there and not to believe that stupid neuro. My hubby was told by a neuro he had early onset Alheimer's........no way either of us believed that one.
Off to Missouri we went......we were there a couple of weeks ago. It is a small world, huh?
Good luck!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
My 1st appt was 7:30! I was totally wasted and hurt so bad I stayed another day at the hotel. I hope she does well.
FYI...Because I was bringing in my own test results I did not know I needed to fast. The doc wanted to test me for something and I had to come back a few hours later. Sooo, maybe have her not eat anything after midnight.
Wishing all goes well and I look forward to your post when you get back. I will post too. I know I will start Heparin shots. My appt is at 1:00pm.
Have a safe trip! Michele
Posts: 106 | From Texas | Registered: Jun 2005
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