posted
I have battled chronic Lyme disease and ignorant doctors for I don't know how long.
After years of health problems, I was finally diagnosed 4 years ago and treated with 11 months of antibiotics.
I recently found out that that didn't kill it and now, besides being in my brain and who knows where else, it's also in my eyes and the inflammation is threatening my sight.
I had Lyme disease when I was 12 years old and, knowing what I now know about Lyme disease and false negatives, I suspect that it was never actually cured.
This past weekend, my brother told me that my little 5 year old nephew (and Godson) had a bulls' eye rash and is on a three week course of amoxicillin.
I am concerned that this will not be sufficient to kill the Lyme and it breaks my heart to think that what has happened to me could happen to my nephew as well.
The problem is that my brother and sister-in-law are not very open-minded when it comes to certain medical issues.
Over my many years of health problems, I've always suspected that they just think I'm a hypochondriac, but you kinda get used to that attitude when you have chronic Lyme disease and often negative test results.
When I tried to tell my brother and sister-in-law that they should take him to someone who specializes in Lyme, they pretty much just brushed me off and said "Oh, his pediatrician says she deals with Lyme all the time and that three weeks of antibiotics is plenty."
So, I was wondering:
A) Can anyone recommend a Lyme-literate pediatrician in North-Eastern New Jersey near Ridgewood? (And any specific information I can tell my brother about these doctors so I know I am referring him to someone they will like)
and
B) Does anyone have any advice about how I should broach the subject with parents who might not be super open-minded?
I don't want to come on too strong but I want to make sure they understand that Lyme disease is not to be taken lightly and they really should get a second opinion from a pediatrician who really understands Lyme.
posted
On the positive side, apparently people do get well fairly easily if treated early. My mother got Lyme the same time as my daughter. She took some antibiotics at the time and is fine now. She doesn't remember what abx or how long but is sure it wasn't for a month.
I think all you can do is tell the parents that there are a lot of people that need more than the recommended course of abx and to keep an eye out for any changes in health, behaviour, or mood. You could tell them there is a whole controversy about it and give them a website to look at that would explain it clearly and simply.
Since you will see the child, you can also watch and see if you need to remind them later about the Lyme.
I have told people for years about the gluten free diet and how much it changed my life. Some of them have obvious symptoms of gluten intolerance and some have agreed they should try it. No one has. And trying that diet is nothing like accepting the whole Lyme problem.
This Lyme problem is unbelievable unless you are living it.
Posts: 984 | From US | Registered: Dec 2007
| 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