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Lyme Community Lyme Disease Support Forums General & Support my daughter's story (symptoms)...your opinion?
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07/12/2008 07:32
indigohope
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hello,

here is how it all happened....I was wondering what you all thought and if you thought the possibility existed for my poor little 7 year old.

We have had numerous appts with many drs and finally at the end with a borderline positive blood test result for Lyme disease (which I hope we finally have an answer here).

past 10-11 months

Symptoms include:

major anxiety and depression

OCD terribly

tingly fingers and toes

sensory issues (couldn't wear pants, socks, shoes) took her to an Occupational Therapist for his

Bladder issues

many rashes pimply (drs thought it was molluscum contagious...but not contagious --

I remember a bulls eye, thinking it was just a bruise (purply in color)

major motion sickness - car sickness very often

seems like GERD issues - lots of naseua, feels sick everytime she eats

outburts, temper tantrums, mood swings

I am sure there are more, but these things have been overwhelming and just heartbreaking. I want her comfortable and better. She complains about her throat area feeling tight a lot, etc. and hates eating.

Thanks

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07/12/2008 09:59
darlabrown1
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Where are you located? I'm in Atlanta and there are a couple good places here that treat Lyme.

Darla

Darla
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07/12/2008 10:01
indigohope
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I am in NJ -- and so frustrated
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07/12/2008 10:04
darlabrown1
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I know there are some resources on this site to help find Lyme Literate Medical Docs (LLMD). I can't remember where it is but if you cannot find it let me know and I'll help you. One of the group leaders should be able to help you find it as well.

Good luck...hang in there. I have found this site very informative and supportive.

Darla

Darla
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07/12/2008 10:12
darlabrown1
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Here you go...you may want to try this resource for finding LLMD. Email natcaplyme@natcaplyme.org or call them at 1-703-821-8833.

Check out this site as well. http://nationallymereport.com/?p=14&gclid=CMXE7t7qupQCFRdinAodVDd1TA

Darla
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07/23/2008 04:48
ConnieD
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Hi Indigo Hope,

I feel sooooo bad for you and your poor little girl. Lyme stinks for anybody, but for a child to suffer...well, that's the worst.

I suggest you see an LLMD. Jaime has a list of all the LLMDs in the country and will help you to find one in your area.

You have been through a lot. It is shameful that this disease has been ignored and people are not educated about the signs and symptoms and that doctors are not trained to recognize it.

Have you seen Under Our Skin? There was a doctor in the film that treats children. I don't know if he still practices or not. Anyway, Jaime has the list. PM her and she will help you.

Also, if you're interested, I was treated alternatively. My doc is not an LLMD, per se. He is a biological MD and does complementary medicine. In other words, he uses a variety of homeopathics, herbals, and nutritional sups to treat the person. Since he is an MD, he will also use conventional meds when necessary....I needed some pain control while at the clinic and that was nice. He is in the South and I realize that may be too far for you to travel. Also, it is alternative medicine which may not be for you. However, it did work for me and I was ready for a change. My FM was 'managed' with tons of meds that did nothing for me. I saw doctor after doctor, had test after test, you know the story....I was just really sick of no answers and lots of drugs. The timing was right for me to try something different. If you are interested, just pm and I will give you more information. Just want you to know all of your options.

Peace,

Connie

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/23/2008 13:14
ldsucs
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GERD!!! YES!!!!

My DD who is almost 3 had MAJOR GERD! Dr's kept saying she'd grow out of it. We did an upper GI, barium swallow and found nothing structurally wrong. We tried all sorts of medicines for GERD. Nothing worked! She throw up everyday multiple times still over 2 yrs of age!!!

Finally she did test CDC pos for lyme 41 and 23 and we started zpack.

Her GERD completely gone within two months. It's been five mths and she is like a new kid.

You can try treatment and see what happens...give it a couple months and see it you notice improvements. Kids heal faster than adults! So the longer you wait the worse it could be to treat!

Hope she feels better!

Trust yr mommy gut!!! Glad I did!

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07/23/2008 13:17
ldsucs
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many rashes pimply...

She has this too. It's gotten better with more

Omega 3's fat DHA's! Give her the fish vitamins!!!

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07/24/2008 10:26
lymemd
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Sounds like Lyme
I am a family doctor in Germantown Maryland. I have been treating Lyme for several years and have treated between 500 and 1000 patients. I am learning all the time. I don't claim to have all the answers. I answer questions because I want to help people. Everything about this disease is controversial. I want to write a book which will be a patient guide to Lyme, so questions from patients are helpful to me.

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