posted
Our 15 year old son has had some symptoms of Lyme: bad, persistent headache, body ache, joint pain, fatigue, and, early on, fever, sore throat, during this fall and winter (October through now).
He has missed over 25 days of school so far. Last year he was sick with various illnesses on and off and missed 43 days of school.
He has tested positive for Lyme.
We live in a rural, wooded area with many deer and moose, etc.and he has been in the woods much of the time during the spring, summer and fall.
The infectious disease specialist doesn't think he has Lyme because his lab tests don't show the problems associated with serious Lyme (he was tested for white and red blood count, vitamin deficiencies, SED rate, MRI and other tests, but NO follow up tests for Lyme or other tick borne illnesses) and we didn't notice any ring rash. He has slightly low calcium and vitamin D and was placed on supplements for that.
His symptoms (above, including sore throat and fever at first, but not now), began this fall when he began taking doxycycline for acne (100 mg 2x/day). He was on and off doxy for about 2 months, but off for the last 3-4 weeks until recently, to avoid stomache aches due to lots of ibuprophen use (and because the doctors thought he might have pseudotumors of the eye--he was since checked by an ophthalmologist and he doesn't have these.
The neurological check didn't turn up anything, either. The neurologist said he should stop taking ibuprophen as his headaches might be from overuse of that. He has been off the ibuprophen for 3 weeks now and the headaches persist.
He was placed on a low dose of Elavil-- 12 mg for first week and 25 mgs for subsequent weeks-- to see if headaches improve. He is in his second week of taking this and no improvement yet, but the doctor said not to expect improvement until the third or fourth week.
This past week he was feeling somewhat, slowly better(headaches, joint pain, and fatigue improving) and had gone back to school.
Three days ago I reenstated the doxy as I think he has Lyme, and I figured it couldn't hurt as he was taking it for acne before. His symptoms got worse. And, the second day, he developed a painful spot on the bottom of his foot, which was not from injury, as he has not moved around much. Could this be due to the Herx reaction?
His PCP won't pursue Lyme due to the infectious disease specialist diagnosis. So I am giving him the doxy that was prescribed by the dermatologist for acne.
They say he might have a stress reaction or depression. But he has never had this array of symptoms before due to stress or depression (I've never thought he was depressed and he says he is not, except for being tired of being sick), not even persistent headache or even occasional stress headache, so I don't think they're right.
The infectious disease specialist said his frequent illness last year and this (with the exception of a pretty healthy summer)may be due to the fact that he may have low resistance in general. But he was not a sickly child before these last two years when we moved to Maine where he was in the woods constantly.
I would like him tested further by a Lyme disease specialist to get to the root of this. Specifically I would like him retested for Lyme and other tick borne illnesses, and whatever tests can identify whether he has Lyme. Are his symptoms due to low grade Lyme?(which would account for no bad results from his various lab tests except positive Lyme titer). Or could the LLMD specialist rule out Lyme? We just want to find out why he has the persistent headache, fatigue, body ache, and joint pain, and get him the proper treatment.
I feel abandoned by the medical profession, and am resorting to trying to figure out myself what he has, giving him doxy from the dermatologist to treat what might be Lyme--we just don't know what to do. I have never felt so helpless with regard to medical issues.
We would appreciate any help you could offer, especially a reference to an LLMD who is familiar with the latest advances in identifying and treating Lyme. Thank you very much for your work on this.
Posts: 1 | From Maine | Registered: Jan 2012
| IP: Logged |
Please stay away from Infectious Disease docs. They have no clue about this horrible disease or its complex treatment. Foot pain is a result of a co-infection called Bartonellosis (you can get 5 different ones with Lyme).
Get your son to a Lyme-literate doctor (LLMD) a.s.a.p. His symptoms sound very much like Lyme.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic