LymeNet Flash: 11 yr old daughter struggling.....Mom needs advice

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Posted by jenn (Member # 21687) on :

My daughter has started treatment back in July...

her symptoms were:
headaches, emotional over EVERYTHING, crying,

sensitive to light/noise, unable to keep up in

school and tired. But main complaint, headaches

and VERY sensitive, emotional. Labs from Quest

indicated +41 band IGG.

Took her to my llmd, and they started treatment

ceftin 2months...doing better than declined
zitro...immediate response doing really well 2 months..then fizzled!!

Now doing doxy, can't do full dose of 300mg because of stomache aches and issues.

Please, can someone PM me if they are going through ups&downs with treating their child.

had an apt. with dr.j but cancelled, cause she was doing excellent! Now kicking myself!!!

can't seem to find an abx, that will keep her feeling good for a while...nervous about all the changes...maybe nothing will work!!!

scratch test schedule next week for pennecilin allergies...

Did llmd switch too soon, maybe it was just a flair up?? So confused and scared!

Would like to find a llmd who is familiar with kids...although dr.j is probably the best..he won't be around forever [Frown]

Posted by sixgoofykids (Member # 11141) on :

Has she been tested for heavy metals? My daughter's primary complaint was headaches. She also had some joint pain and some trouble with learning.

Her lead levels were high. Treatment for the lead made all the difference in the world for her.

Posted by jenn (Member # 21687) on :

have not done that...although my llmd will probably poo-poo that! but will insist!

heavy metals like....Lead?

Posted by lululymemom (Member # 26405) on :

Have you ever added a cyst buster like Flagyl? It kills all those spirochetes that have gone into hiding (cyst form) My daughter was on similar treatment and made a huge turn around when she added flagy. Also treating parasites helped too.

Posted by timaca (Member # 6911) on :

Was she tested for EBV? Enterovirus?
Enterovirus is best tested for at ARUP lab:
http://www.enterovirusfoundation.org/chronicinfections.shtml

EBV is best run at Focus Lab: http://www.focusdx.com/focus/1-reference_laboratory/search_frame.asp?searchOptionScope=2&S1=1&S2=1&test=&sp=40445&Keyword=EBV#an_40445

Good luck,
Timaca

Posted by momlyme (Member # 27775) on :

Jen,

My son started treatment in July too. He has tried several combos of antibiotics with no improvement on symptoms.

His liver function tests were up and his white blood counts were down... we finally took him off all antibiotics to treat for HPU.

He is not better yet, but at least he is responding as he should to this treatment.

It is a long road, one no child should have to endure. If your LLMD is not responsive to the thought of heavy metals, get in touch with the doctor I sent you information on.

She is helping me and my son through this tangled web!

New York is tough to test for heavy metals in. I have been trying to find a way since mid-December. I finally found a loophole and posted about it yesterday. PM me if you need help with this.

Lead, mercury, cadmium and aluminum are the big ones. If you have any amalgams and if she is your first born, chances are you passed some mercury on to her. [Frown]

If I knew then, what I know now, I would have done things differently!

Posted by sixgoofykids (Member # 11141) on :

Yes, my daughter had lead. Many also have mercury. You want to have her do a provoked urine test not a blood test.