posted
My son was bit by a deer tick in 2005 when he was 13. He had the classic bulls eye rash and was treated with 2 weeks on antibiotics.
About a year later he started having headaches and daily nausea and vomiting. The first few times lasted a week or two and we thought it was just a virus. He was then diagnosed with abdominal migraine by a pediatric neurologist. He also suffered from insomnia. His espisodes got longer in duration and closer together until he had his symptoms constantly.
His neurologist backed off from her diagnosis of migrain and referred him to to a therapist. His therpist told us that she felt his sypmtoms were physical in nature and any stress he had was a result of his symptoms and not a cause. He missed so much school and went from an honors student to barely getting by in school.
This fall he started having dizzy spells and occasionally fainting. He was referred to a cardiologist and is awaiting further testing. But his heart is not doing a good job of regulating his blood pressure when he changes body position. Like most of his symtpoms, this comes and goes.
I also asked his pediatrician about chronic lyme and he referred us to a pediatric infectious disesase specialist. I told her our story and she did not think it was possible that he had chronic lyme, and in fact she told us that for the most part she didn't believe it existed. She did order a blood test which showed no antibodies, so as far as she was concerned that was the end of the story.
His most frightening symptom started late this fall. He occasionaly wakes up unable to move or feel his legs from the hips down. The feeling does gradually return.
This happened again last week and we took him to the emergency room at our local hospital. They transfered to another hospital(where most of his specialists practice) where I thought he was scheduled for an MRI. I had to fight for them to pay any attention to us at that emergency room.
He was finally given an MRI a full 12 hours after he woke up with the paralysis, which at this point was fully resolved. Surprisingly (not!) at that point the MRI showed nothing abnormal and the emergency room neurologist informed us, in front of my son, that they believed his symptom was caused by stress and that he should see a psyciatrist. As you can imagine, I was not pleased. The only real stress he has in his life is from his illness!
So this is where we are. I had already made an appointment with him to see a another therapist because he is understandably angry and depressed about his situation. I however do not believe that his illness is all in his head. He is a happy, good natured, well adjusted kid who was as healthy as could be before his tick bite.
I am not tied to him having lyme, but just want to find out what is wrong with him and help him get better. As you can imagine, my heart is breaking for him. Any thoughts or advice would be extremely appreciated.
Posts: 3 | From Souther NH | Registered: Mar 2010
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I'm sorry for your heartbreak and all that you and your son are experiencing.
Yes, this very much sounds like Lyme to me especially since your son had the Bulls Eye rash. Many of us have had some of the symptoms your son is experiencing (blood pressure when standing,etc).
The best thing you can do right now, is go under the Seeking a Doctor section to find a Lyme Literate doctor near you and to get the needed testing not only for Lyme, but other pathogens (called co-infections) that ticks can also transmit.
Praying that your son finds help very soon.
Morningsong
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
nmbmom,
Welcome and bless you for finding us and posting here.
Yes, yes, yes, it absolutely could be chronic lyme and other common coinfections.
You will get many more replies to your question if you repost it on the Medical Questions Board.
All of the symptoms you described could be chronic lyme.
Many of us have been through the same story....lots of Drs, normal tests, yet many frightening symptoms are present.
Please post immediately on the Seeking a Doctor Board for a LLMD near you(specify pediatric if he is still under 18 yrs old).
If he needs a peds LLMD, Dr J in CT is the best...and many here will tell you that.
There is a waiting list to get in, so call right away.
It only makes sense that a very healthy boy who became progressively ill after a "very undertreated" tick bite, likely has chronic lyme and coinfections such as babesia, bartonella, ehrlichia, etc.
Make sure you read and learn as much as you can so you can advocate for him. You are a wonderful Mom to fight for finding the truth when Drs cannot find the answers (sadly all too common).
Start by reading Dr B's treatment guidelines. Symptom list is on p 9-11, and coinfection info p 22-27....
There are many reasons why no antibodies show up on testing.
He is probably too sick and no longer making antibodies. Testing is also poor.
Lyme is a clinical diagnosis, based on history and symptoms, not a lab test.
ID Dr's will likely not be able to help him as they usually deny the existence of chronic lyme.
He needs a Lyme literate MD who follows ILADS guidelines......and fast!!!
Please keep posting and let us know how he is doing.
Go to Medical Questions also for more help.
Good luck. I am glad you found us!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Dekrator 48, as usual, has given you excellent advice,,,I can add NOTHING!!!Reread it again and again!!(thats my 2 cents worth)
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Heck yes he's angry! There's something wrong with his body. He knows it. He feels it. He's not getting any help from the typical medical establishment.
I wish you luck in finding someone to take your son and his illness serious. You are on your way.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I'm sorry to hear about all that you and your son have gone through.
Your story sounds so familiar--many others on this board have experienced the same kind of ignorance, disbelief, ridicule, abuse, and lack of help from the medical profession.
The disease both causes anxiety/depression/volatile emotions in a physical way, and gives us the logical reaction to finding out we have a chronic disease and can't find anyone to help, or even believe us.
Your son is lucky to have a mother who is so supportive. Your belief in him and search for help on his behalf is a very positive thing for his psyche.
Look for an LLMD right away. You will probably have to wait a while for an appointment, but sometimes you can get on a waiting list for cancellations.
To understand more about Lyme itself and the controversy that makes it difficult for us to get it recognized or treated, read the book "Cure Unknown" by Pamela Weintraub, and watch the DVD "Under Our Skin" (available directly from www.underourskin.com).
Besides the Burrascano guidelines, several books including "Healing Lyme" by Stephen Buhner and "The Lyme Disease Solution" by Kenneth Singleton have a lot of information you can use to help your son with diet, supplements and herbal remedies, etc., while you are waiting for the LLMD appointment.
Many of the things mentioned in Dr. Singleton's book and Dr. Burrascano's guidelines are aspects of a healthy lifestyle or things that help with symptoms, before you know the exact cause.
Blood tests for Lyme frequently show no sign of Lyme at all, or just a minimal indication that it might be present, and cannot be used to rule it out. If the test is positive, it supports a diagnosis of Lyme.
An LLMD doesn't need test results to diagnose Lyme--they go by symptoms and history, and response to antibiotics.
I was SO happy after my first LLMD visit. The doctor was kind and compassionate, took me completely seriously, and spent 2 hours with me. He asked me lots of questions, and read the 30 pages of written history I brought with me, before making a diagnosis.
Some people are thrilled to get a diagnosis at last. I was not happy to have it confirmed that I had Lyme, but I was thrilled to have someone to not only listen to me, but who had the expertise to offer me real help.
Visiting an LLMD would be a positive experience for you and your son.
Good luck.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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