lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi - I know some of you are interested in finding out the results of my nephew's visit to my LLMD. He went this morning.
She said he definitely has Lyme and has probably had it since a "spider bite" he received in Maryland when he was two.
She read all the hospital records and the Quest labwork and came to her conclusion. She said the gastroenterology report in and of itself was classic Lyme.
The discharge report diagnoses my nephew with "conversion disorder". Now that gets to follow him around forever!
They said the same thing about me when they didn't want to attribute my symptoms to Lyme. It is such a crime!
My sister is so sad, as we all are in my family.
Will continue with updates - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I am so sorry to hear this!! I do hope he does well on treatment. How old is he??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Lymetoo, my nephew is only 11. I had a thread here earlier titled "Update on my nephew may have Lyme" detailing some of the story.
I am so angry at our local hospital for labeling him with conversion disorder. He's a happy, smart kid who loves school.
They blamed his symptoms on a desire to get out of school early for summer. Jerks! They did that even when his stomach scope showed inflammation of his stomach lining! AND he had an elevated white blood cell count!
That makes me even MORE certain that they knew it was Lyme and didn't want to diagnose him. I mean, they really can't be THAT stupid, can they? They told me I had conversion disorder, too, back in 2003.
Well, now we know for sure that he has Lyme and can get him on the right road, hopefully to full remission.
Take care - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lymelady, what was found in the gastro report that indicated lyme?
Thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6480 | From Louisville, Ky | Registered: Jan 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Just a stupid question from just don---
What the heck is conversion disorder???
I thought that was confined to a BAD car to HOTROD conversion.
OR a house done poorly as a apartment makeover???
Never heard of conversion disorder in people,,,what is is,,,like fibro or CFS??? Another made up joke ???like --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Pam, I haven't yet spoken with my sister to get the details but I will sometime today and will get back to you about your question.
just don - again, you are making me laugh!
Conversion disorder is a mental illness in which, to avoid a distasteful task or event in your life, you "subconsciously" become ill to avoid the task or event. It's not faking because it's not under your conscious control. Your mind is causing you to have physical symptoms.
I was diagnosed with conversion disorder when my legs gave out on me early in my infection. I didn't have any other symptom at the time and I had a brand new baby at home. Voila! The doctors latched on to postpartum depression and conversion disorder (lazy momma doesn't want to care for new baby so subconsciously makes her legs quit working so she can't run to care for baby) to explain the cause of my trouble.
They did this even when two months prior I'd had a large, engorged, female tick on my pregnant abdomen which was removed by my HMO primary doctor. She went right along with the conversion disorder diagnosis even though she personally had seen how deeply embedded and engorged the tick was! It took her 20 minutes to dig it out!
My nephew became very ill during the final weeks of school. Voila! He has conversion disorder because he wants to get out of school early. (Despite the fact that he loves school and is a very good student).
It's all ridiculous but the conversion disorder diagnosis has followed me around so that I'm viewed as a mentally ill attention-seeker anytime I need ER help. Thank God that hasn't been too often lately. Only twice in the last year.
I just hope this doesn't follow my nephew around, too. I believe it's only mentioned once in his records, so hopefully we can keep it that way!
Take care, All - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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I am so sorry to hear about your nephew's illness. It sounds so similar to my 10 year old son's presentation.
Thank goodness you are there to help your sister (and rage at the doctor). So glad he has seen a LLMD. I am sure they will consider co-infections which must be suspected because of such a sudden severe onset of illness.
I am interested that your nephew is unable to weight bear. I remember you said that for you, it is your hips that are the problem. My son still has flare ups when he gets severe leg and arm weakness. It's so strange because he can move his arms and legs.
His LLMD says it's rare to have this severity of leg weakness and the ducks here think it's psychosomatic. I have even begun to wonder if it is a psychogenic reaction to his flare ups.
Do let us know what the gastro changes were.
Anyway, remember that children do get over this horrible illness with the right treatment. I do feel for you and your sister and send you my cyber support.
Chiz
Posts: 67 | From UK | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi - I spoke to my sister and she said that the gastro report had mentioned all of the symptoms of which my nephew was complaining, such as migrating joint pain, tremors, headache, exhaustion, and stomach pain. That's why my LLMD was able to say all his symptoms definitely point to Lyme. I guess it was a detailed report.
Chiz, I am so sorry to learn of your son. I would like to ask you to not think of your son's symptoms as psychogenic. My nephew and I both can move our arms and legs while lying down in bed but when we stand up there is profound weakness (during flares).
It does seem odd and look strange to be able to move around freely in bed but then not be able to bear weight when standing.
With treatment we have both been able to get up and walk again, but sometimes the severe leg weakness returns. In fact, for both of us, our legs get tired easily, especially when climbing stairs.
It was because I could move in the bed but not walk that I was diagnosed psychosomatic.
I'm not sure, truly, how "rare" this symptom is. I would be curious to know.
My nephew's Igenex results will be back in a month. The doctor is checking for co-infections. I do think he probably has co-infections due to the severity of his symptoms.
Thanks for the support! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Doctors seem to dx anything that can't be explained by them as being pychosomatic. Crazy! They're the ones with the real problem!
I hope your nephew responds well to abx! Thank goodness you were around to help him get the help he needed!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
igenex western blots were NOT taking 1 month; they do take 1 week to do all the tests for them; but 2nd week they should be FAXED/SNAIL MAILED back to your md who ordered the tests.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, bettyg. I'll tell my sister that - perhaps our LLMD just figured she'd talk to my sister at my nephew's next appointment about the test results, not realizing our desire to know the Igenex results NOW!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I'm not sure if this is the exact same thing, but I had a doctor mention Orthostatic Intolerance once.
Basically, standing makes your symptoms worse.
Maybe you can google that, and see if it fits your symptoms, and if it does, take it to your doctor.
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Now that gets to follow him around forever!
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