posted
I was wondering about the famous Dr J in Connecticut.
Do all children get IV meds?
Is he taking on new patients?
I'm starting to think I don't want to mess around any more with my kids. Their GI is testing the younger one for thyroid problems and the older one for thyroid and autoimmune. I gave her multiple opportunities to say "this isn't lyme", but she wouldn't say it. Frankly, she all but said it is probably lyme (for the younger). I also have an appt for the younger one with a neuro... she is having headaches that make her cry. She is not quite 4 years old.
I'm so exhausted right now. The younger had lyme two years ago, and the older one 1. prob. got it from me 2. had a weird rash (weird enough that I took a photo of it) as a baby and 3. had an engorged tick on her for two days last spring.
@##$ $^^&*^$$ #$&%##$ !!@#%%$$
Please excuse my cursing.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I don't know how he treats but he is taking new patients. Call soon because it may take you some time to get in.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Not all of Dr. J's patients get IV. My teenage son never did, he has only been on orals.
Dr. J. determines what medicines will be given when he physically sees the patient for the first time and examines them, then adds and/or tweaks the medication as treatment continues.
He told me when we first started seeing him that some children had to go on IV right away because they were so ill. Some couldn't walk, but came in a wheelchair, others were light sensitive and had to have the lights dimmed, etc.
We will see Dr. J next week, so I will ask if he is taking new patients and will inform all of you when we get back.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Garden - I would not waste any more time, but get all your children to a LLMD (Lyme-literate doctor) a.s.a.p.
Posts: 8981 | From Illinois | Registered: May 2006
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son did 3 years of orals and he is well. That was 5 years ago, on antibiotics from 9-12. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
We just had our first visit with Dr. J for my 3 year old about 3 months ago and our second one is next week. He is taking new patients, he does use orals, and he is WONDERFUL!
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Garden, if you don't mind my asking, what are your kids symptoms?
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Child #1: History of: jerky neck movements (as baby, had to have EEG to rule out infantile spasms) severe colic and reflux severe constipation and bloating significant sensory processing disorder raging ear infections tonsils = "nastiest soup inside I've ever seen" said surprised surgeon MRSA anxiety borderline selective mutism emotional/behavioral problems = 90 minute epic meltdowns, red-faced screaming with only pointing and grunting, non-verbal (in an otherwise articulate child) malnutrition despite a good diet environmental sensitivities
Current: impulsive/inattentive slight sensory problems linger very low BMI despite great eating hair trigger behavior issues thinning hair
What has helped: gf/cf diet, removing other trigger foods, vitamin/mineral supplementation, occupational therapy, B12 spray, diflucan, culturelle, epsom salt baths
Child #2: History of: long term diarrhea Lyme (bulls-eye rash, treated w/3 wks amoxicillan) "drunk" walking Low in some B vitamins and glutathione
Current: low stamina fatigue tummy aches headaches random pains (back hurts, hip hurts, chest hurts, etc) constipation thin, dry hair (has never grown in that much) wakes with puffy face/eyes many mornings
What has helped: gf/cf diet, *very* limited fruit, vitamin/mineral supplementation
Low thyroid would actually explain all of child #2's current symptoms, but then, why does she have low thyroid, kwim? She can already not tolerate gluten, dairy, or fructose.
So that's what I'm dealing with (oh yeah, and I'm sick too).
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
I want to stress that my older child (child #1) has come SO FAR with just a holistic nutritional treatment. Night and day difference. She's gone from barely functioning in a small, sweet preschool to absolutely thriving in a large, intense elementary school.
We also give topical liposomal glutathione, an amino acid-based formula, and other things, but I don't have prrof that those others are necessarily helping.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Our 12 year old daugher has been seeing Dr. J for 21 months now. All orals no IV (so far).
She was 9 when she became infected.
As of early December he was still accepting new patients (long wait).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
We're in for appointments. Thank you all for your feedback.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
you will be in great hands! Love, love, love Dr. J.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Good luck Garden.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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