posted
I have a 6 year old son who, in February 2007 developed a "gait instability".
Right away they did a CAT scan and an MRI of the brain.
Initial impressions of the radiologist was ALS even though he was seeing this in a 5 year old boy because of white matter lesions.
We started a series of blood tests, all negative.
During this time his walking and balance became worse.
He had always had stomach issues and a rash on his buttocks so our next thought was possibly Gluten Ataxia.
Blood test came back negative for Celiac Disease so I begged them to do an upper endoscopy, another negative find.
I told the doctors that he developed that rash on his buttocks in 2002 and had a culture done on it but the results said it was possibly a form of herpes but was inconclusive due to the presence of another virus!!!!
But, back to the neurologists, they started telling us the symptoms had all characteristics of ALD. We were even given information as where to get the Lorenzo's Oil.
Of course we were devestated!
Tests came back, guess what, another negative.
His neurologist was perplexed and told us we had to find someone else!
During this time he started developing upper extremity tremors.
Found another neurologist, more testing and more MRI's.
The white matter lesions were still there and the SPECT test showed activity too.
They thought now it was either CP or MELAS, a mitochondrial disorder.
Tests come back, again, negative for a mitochondrial disorder.
He is then diagnosed with Spastic Diplegia, the most common form of CP.
We got him leg braces and a posterior walker to help him get around on his own.
In October he developed a new symptom, fuzzy eyesight with double vision and, what he called, little white floaty things.
Opthamologist said his eyes were perfect so it had to be something neurological.
Now his neurologist said it wasn't CP and that it has to be mitochondrial.
Just last Friday we took him back to see the doctor and we told her to order up more bloodwork which included the Lyme tests.
Of course, she ordered the ELISA, the PCR DNA and the wrong Western Blot IgM.
After further research she should've ordered the Western Blot IgG.
But anyway, all the other blood work she had done came back negative, AGAIN! ELISA was negative, PCR was negative, 21 bands of the Western Blot was negative but the 41g band came back positive.
Here on Long Island NY there is a great controversy over diagnosing and treating Lyme so I made an appointment in Virginia with a Dr. G on January 24th.
Every month my son developes another symptom and all appear to be Lyme related.
Not one doctor up here has even mentioned Lyme!
His recent visit to his neurologist ended up with her saying that there was no way this was bacterial.
Hopefully this doctor down in VA can get to the bottom of this.
He is best friends with Dr. B so that makes me feel much better.
It is heartbreaking to see my son deteriorate before my eyes.
His upper tremors have gotten really bad that he couldn't hang Christmas ornaments on the tree this past Christmas.
Any responses would be greatly appreciated.
Trust me, I would love to post the rest of his symptoms but they are too numerous to mention.
I am 100% sure they point to Lyme.
I will keep all posted on any developments as well as a diagnosis.
God bless all!!!! Terry
[ 13. January 2008, 11:55 AM: Message edited by: guitarpicker37 ]
Posts: 5 | From NY | Registered: Jan 2008
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posted
I am sooo sorry your son (and you) are going through this. I know how hard it is having Lyme myself, nevermind one of my kids.
You've obviously done your homework on this disease. It certainly sounds to me like it could be Lyme and getting to a LLMD is good idea. Your son is very lucky to have a mom who is so strong and resourceful.
Please, please let us know how your appt. goes with the Lyme Doctor.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
Breaking this up so it can be more easily read.
I have a 6 year old son who, in February 2007, started developing a "gait instability". Right away they did a CAT scan and an MRI of the brain.
Initial impressions of the radiologist was ALS even though he was seeing this in a 5 year old boy because of white matter lesions.
We started a series of blood tests, all negative. During this time his walking and balance became worse.
He had always had stomach issues and a rash on his buttocks so our next thought was possibly Gluten Ataxia.
Blood test came back negative for Celiac Disease so I begged them to do an upper endoscopy, another negative find.
I told the doctors that he developed that rash on his buttocks in 2002 and had a culture done on it but the results said it was possibly a form of herpes but was inconclusive due to the presence of another virus!!!!
But, back to the neurologists, they started telling us the symptoms had all characteristics of ALD.
We were even given information as where to get the Lorenzo's Oil. Of course we were devestated!
Tests came back, guess what, another negative. His neurologist was perplexed and told us we had to find someone else!
During this time he started developing upper extremity tremors. Found another neurologist, more testing and more MRI's.
The white matter lesions were still there and the SPECT test showed activity too. They thought now it was either CP or MELAS, a mitochondrial disorder.
Tests come back, again, negative for a mitochondrial disorder. He is then diagnosed with Spastic Diplegia, the most common form of CP.
We got him leg braces and a posterior walker to help him get around on his own. In October he developed a new symptom, fuzzy eyesight with double vision and, what he called, little white floaty things.
Opthamologist said his eyes were perfect so it had to be something neurological. Now his neurologist said it wasn't CP and that it has to be mitochondrial.
Just last Friday we took him back to see the doctor and we told her to order up more bloodwork which included the Lyme tests.
Of course, she ordered the ELISA, the PCR DNA and the wrong Western Blot IgM. After further research she should've ordered the Western Blot IgG.
But anyway, all the other blood work she had done came back negative, AGAIN! ELISA was negative, PCR was negative, 21 bands of the Western Blot was negative but the 41g band came back positive.
Here on Long Island NY there is a great controversy over diagnosing and treating Lyme so I made an appointment in Virginia with a Dr. G in Parksley on Junuary 24th.
Every month my son developes another symptom and all appear to be Lyme related. Not one doctor up here has even mentioned Lyme!
His recent visit to his neurologist ended up with her saying that there was no way this was bacterial.
Hopefully this doctor down in VA can get to the bottom of this. He is best friends with Dr. Joseph Burrascano so that makes me feel much better.
It is heartbreaking to see my son deteriorate before my eyes. His upper tremors have gotten really bad that he couldn't hang Christmas ornaments on the tree this past Christmas.
Any responses would be greatly appreciated. Trust me, I would love to post the rest of his symptoms but they are too numerous to mention. I am 100% sure they point to Lyme.
I will keep all posted on any developments as well as a diagnosis. God bless all!!!! Terry
==================
Terry, What is happening to our children is unforgiveable!!
I do hope your son will have a full recovery! It CAN happen!!!
Please edit out the LLMD's name... so as to protect him. No need to edit out Dr Burrascano's name as he is no longer practicing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sounds like Lyme/TBDs!!! My little daughter had Lyme & Babs and had to be on abx for 3 years- she was in a great deal of pain and she had autistic presentation at first- now she has been off all meds for 7 years and has been having a great, normal childhood. I hope the same for your son- it does take TIME- and a good LLMD- I am glad you are here, you are in the right place- 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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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
So sorry to hear that your son is suffering these symptoms.
I just wanted to say that upper extremity tremors were symptoms that I developed after years of untreated lyme and babesia.
My head and hands shook, and I had numerous other neurological, cardiac and physical symptoms that finally led to a diagnosis of lyme in 2006.
Now, after almost one and one-half years of antibiotic treatment, my tremors are about 90+% gone. Actually, those were some of the first symptoms to leave (and the last to develop).
Despite a history of tick bites and bulls-eye rashes, my recent blood tests have only shown band 41 positive too. That is the flagella of a spirochete bacteria, and two llmds say that see that frequently in patients.
I hope your son can start treatment and get better.
A visit to an llmd like Dr. J is essential. Most neurologists and doctors know very little to nothing about tick borne diseases, sorry to say.
Best wishes for your sons health.
Posts: 2557 | From home | Registered: Aug 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Best wishes to you and your son.
It certainly sounds like Lyme to me, and all those doctors should be ashamed of themselves!
They aren't ignorant, they just pretend to be so.
Long Island is teeming with Lyme. My sister and her son were diagnosed last year several months after having spent time on the beach on Long Island.
They got the run-around, too. My nephew suffers with stomach pain and weak legs. Sometimes he can't walk. The hospital kicked him out after two days when tests came back negative and they wrote "conversion disorder" in his medical record.
That's another name for it's all in your head.
I'm glad you're taking your son to a good LLMD. I know how heartbreaking it is to see your child sick.
Bless you! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
"Here on Long Island NY there is a great controversy over diagnosing and treating Lyme"
Unfortunately it is a controversy in every city, town and state. That's why we all
travel so far just to get treated. Sounds like you're on the right track. Good luck.
Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
It's so sad to hear this about your son. It's even worse that he's so young and couldn't even enjoy Christmas by hanging ornaments on the tree.
I, too, only had band 41++ IgG come back positive. I think I've had this for over 10 years but just last year it all came out and made me really ill which made me realize something was wrong. I've had symptoms for a long time, but they were few and far between so I never really thought much of it until all of a sudden I have a TON all at once.
It does certainly sound like lyme disease. Please get him to a LLMD (Lyme literate MD) as soon as possible. They will be able to help. They are open minded, wonderful doctors who will do whatever they can to help.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Why is it that, from a place that mainstream ducks all refer to as being greatly endemic in
comparison to wherever I've been like Ohio,Florida, people are still coming on here
complaining of not being able to be seen.
I would have thought that the New England states and including Jersey and the big Apple
would have to be among the most educated about lyme disease in the mainstream meduckal world!
I mean....Columbia University is there....NO??
Ah Well.....I guess... nothing surprises me.....
Like when all the snowbirds come to Florida and the doctors down here tell them they have all
these other things....but NEVER lyme disease....because it does'nt exist in Florida....
Well you dumb A$$E$....I first got it in OHIO where it does'nt exist either....
does that mean you are'nt allowed or can't continue the treatments I have gotten up north....????
For a disease that DOES exist in the NORTH!
Hey ducks....I have it .....and I'M NOW DOWN HERE!
IT DOES'NT MATTER WHERE I GOT IT!
I HAVE IT!
AND THEY STILL GET AWAY WITH NOT TREATING ME PROPERLY!
Un-Real!
Sorry about your son.....Too bad you have to be here....
Good Luck....a 41 on a WB IGM should be sufficient especially with evidence of some kind of rash....
HOWEVER it's the IDSA we can thank for making it so difficult to get an initial correct diagnosis
that a whole lot of people are in stage three and or Chronicly ILL with this disease....
It's too bad we can't get a good class action suite together somehow!
BUT GEE....we can't sue over a "Misnomer"
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
May you continue to find the courage, strength and determination to get the bottom of his symptoms.
Praying for and hoping that he would respond to treatment once it begins. By next Christmas I hope to be reading all about his miraculous recovery!
Peace to you-
-------------------- "You play the hand you're dealt. I think the game's worthwhile."
C. S. Lewis Posts: 36 | From Illinois | Registered: Jan 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
guitarpicker, I'm so sorry that this is happening to another child. I'm currently going through something similiar with my 6 yr old grandson, days from the big 7 yr old.
I'm waiting for Igenex test kit to confirm my suspection.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
GP,
My heart breaks for you & your son. I'm so sorry you're going through this.
I believe that you are on the right path. A good LLMD should be able to differentiate between Lyme and other possible spirochetal infections. They should also be able to differentiate symptoms from those and co-infections.
You said the rash cultured positive for "another virus"? Did the Drs ever bother pursuing the virus?
I do believe you're on the right road to getting your son the help that he so desperately needs.
I'll keep you both in my prayers.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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