posted
My son was first diagnosed with Lyme in 2014. He was treated with oral ABT and it progressed to his central nervous system. They treated with IV ABT. The doctor did not believe Lyme was chronic.
After completing the IV ABT, a few months later, in 2014-2015 his lymph nodes began to swell in his chest. This resolved and no one connected it to Lyme.
In 2015-2016 he is suffering with severe fatigue, muscle weakness, intermittent eye drooping, cognitive issues with retaining information, and the swollen lymph nodes are now throughout the body (neck, arms, chest, groin, legs).
ID, Rheumatology, Oncology/Hematology, and General Surgery have been working on his case. No diagnosis. They said it's not the Lyme because his tighter's were not elevated.
They have ran countless diagnostic tests, CT, U/S, X-Rays, Labs, and even completed biopsy's. Still no diagnosis.
We believe it's the Lyme disease. Please - I need a doctor that will help my son. He is only 16 and his health is rapidly declining. Thank you.
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(breaking up the post for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you a name of a doctor who will see you quickly. I hope you can travel. Folks in Delaware generally come to Maryland for their lyme treatment.
I don't know of any lyme specialists in Delaware.
I believe this doctor will help you regardless of the cause of your son's poor health.
Posts: 9931 | From Maryland | Registered: Dec 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Sent PM
Posts: 1431 | From USA | Registered: Mar 2015
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Your dear son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - you should break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Thanks for coming here - you are correct to ask for help here - people will steer you to good doctors.
Tests are notoriously inconsistent. Oftentimes a person gets some treatment before their tests turn positive - ie when their system is strong enough to mount a defense.
When you mention swollen lymph nodes, it makes me wonder whether he might also have Bartonella, which causes that. You can google symptoms for it and see whether you think he matches any of it.
Posts: 13116 | From San Francisco | Registered: May 2006
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