posted
HI - my son was diagnosed this am with Lymes - he has numerous oddly shaped bullseyes all over his body - my son has limited vocabulary, autism, developmental delay - and I am concerned that I am going to miss something major because he is unable to vocalize his pain or talk about how he feels - he doesnt like Doctors offices, so will not tell how he feels - just says all better - so i cant get a good read of it, just a moms instinct that he doesnt act like his usual self - he started a 30 day course of doxy 100 mg - Dr's office called infectious disease control, they said as it's disseminated - that's the best course of action - is that really all i can expect? I just dont feel it's enough - or am i just being a freaked out mom ??any help - advice - pointers - thoughts would be gratefully appreciated. Thanks.
Posts: 1 | From Ma | Registered: Jun 2008
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Given that it is "disseminated" is it possible that he's had it for a long time and it contributed to his autism?
I think that 30 days of doxy is a good start- can't speak for dosage. It would be a good idea to bring him to a lyme literate md. You could post a request for doc recommendation in your geographic are on the seeking doctor list.
I also recommend having your doctor do a phone consult with the pediatric lyme specialist in new haven. I'll pm more information.
Hopefully others will come along offering help soon.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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tailz
Unregistered
posted
If he's been diagnosed with autism, I'm not saying he doesn't have Lyme, but if I were you, I'd do some research on electrosensitivity, too.
I'll bet he is (or was at some point) overexposed to electromagnetic and/or microwave fields, probably from things like cell phone masts and wi-fi. You might want to read this article suggesting a link...
See, I had my teeth cleaned just a few weeks ago and they are already visibly coated with metals.
What's really interesting is that when I scrape the junk off with a dental tool (or try to) and wipe it on a white tissue, it looks identical to the 'dust' that falls off these pieces of magnetite I have.
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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bettyg
Unregistered
posted
..
i sent you a private message for no. 1 kids LLMD IN USA .... IN CONN.!
can be found in my profile or left side under hello!
best wishes! be aggressive; as indicated above; your son may have bitten many years ago causing his autism.
did he have this from birth on or when did this start?
if from birth? SLIGHT chance you may have lyme disease or co-infection and passed it CONGENITALLY to him. without knowing more details ... just a thought.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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