Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
We just got back after spending one week in a Boston Children's hospital.
My daughter's confusion was getting worse. She had just started a large dose of amoxicillin.
Thought it was a reaction to the meds. Doctors say no.
They ran all kinds of tests and guess what. Everything came back Normal.
They ran a Eliza test and that came back Normal.
I believe her blood count was on the high side, but they said it was normal.
Inflammation was normal but high.
They believe she was adequately treated for Lyme.
Guess what, can't find anything wrong so blame it on anxiety!!!!
Well of course there is worry, anxiety.
But she still has dizziness, headaches, frequent urination, foot pain, anxiety, confusion.
Her dizziness is a bit better after stopping Allimed. She is not taking and meds. right now.
We plan to consult with a Dr. J ASAP!!!
She was treated two weeks doxycycline and then changed to zithromax with herbs etc. Then amoxicillin , but stopped due to possible reaction after two days.
She is very sensitive to meds. The activan they gave her did the opposite and they said they would not give anymore.
Thanks for listening. we see her Lyme doctor tomorrow and hope to get an appointment with Dr. J soon.
I got to see first hand how most Md's treat Lyme. It doesn't exist after treatment. Urgh!!!!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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toby67
Unregistered
posted
i had my first IV-P to test my bladder and kidneys in 1978 at age 11. I also had what i called
"spells" where i felt like i was floating above myself and confused, It was like being given gas at the dentist. i had a brain scan at age 12 - normal...
the confusion made me so nervous that after awhile it would send me into a full blown anxiety attacks.
but i looked really healthy and i played sports, i was told "you're such a pretty girl - stop worrying so much!"
so after awhile, by age 15 when my arthritis test came back negative, i quit complaining and kept it
all in. i was starting to become embarrassed by my symptoms
how i wish we had some of this knowledge we have today! keep up the fight!! you're doing the right thing by her. bless you!
ps- im 41 and finally diagnosed, but my elisa test was negative 3x. igenix found it and i;ve been in
treatment 14months, i take detrol if i have to be anywhere like a show or event... but I'm still peeing alot!!!!
My 5 yr son was going through Children's Hospital, Boston also. Actually pulling him out at this point, have lost faith.
Have just changed Pedi's, long overdue. He misdiagnosed him despite classic symptoms in Sept.'06. Wasn't properly diagnosed until May '07 when his knee blew up. Pedi becoming a problem instead of part of the solution.
Now dealing with neuro issues. (Tingling headaches, hallucinations, eye pain). Has had gastro issues for 2 years, vomits more than any person should.
Son still tests positive, have seen many "ologists" in Boston. Heard the term "adequately treated" more than once, told must be careful to not over treat. :::insert scream here:::
Picking up children's records from old Pedi office, want to read them before forwarding to new Pedi.
Live in town with epidemic levels of this disease, naively hoping this new pedi will help. Dr. J is in our future. Though finances are an issue without our insurance on-board (out of network).
posted
Sorry to all the parents who are dealing with very ill children and no medical support.
Good for you for loving and believing in your child! My daughter is older, but she is the lymie in our house and I know your struggle.
Besides findng the right llmd, I suggest you find a good psychiatrist, because he/she will be the one who backs you up against other doctors.
The first psychiatrist my daughter saw (pretty much forced to see) said she was not depressed but had anxiety about her pain. I thought that would end all of the nonsense about it being just a psych issue and did not continue with the psychiatrist.
I thought it made sense to figure out what was making her ill and continued searching for the answer. When she finally was diagnosed with lyme and began treatment, she did have some psych issues and we had to find a psychiatrist to help with her treatment.
He has been such a steadying force for her. He is on the fence about lyme disease, but has always maintained that she is ill from something.
In those times when you have to see other doctors--and there will be those times--when you list a psychiatrist as one of your child's doctors, it tends to decrease the "this is a psych issue" discussions.
Also, having a chronic illness is hard on everyone and they can help your child cope with all of the issues surrounding being sick.
My daughter has been with her's for several years now and I wish we had found him earlier.
Posts: 177 | From God's Grace | Registered: Apr 2007
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