posted
Hi all, I am looking for help to see if anyone might have dealt with what I am dealing with. yes I do live where there are tics!
he is now 13 years old
1- son was normal pregnacy 2-slow at speech, other deveolopement fine 3-sweet loving youngster 4-had a little trouble in early school years 5-around 8 years old, BIG time change. One had to do with an incident, but since so many things started.
I have had him hospitalized three times, they come up with ADD, OCD, ODD, DBD ETC....ALSO STATED MAYBE HIGH FUNCIONING AUTISIM. (sadly there is bi polar on his paternal side)
He is actively now only on Abilify. He was on Ritilan that did help a little, but stopped.
So this sweet sweet child, went from sweet to like having quintuplets in one body...he is a handful.
*troubles remembering, focusing, using logical means to sort and organize. *complains of pains, back, legs, stomach etc. *sweet and defiant, more defiant.
I had him to Dr. B office in Rhinebeck NY, where with many different blood tests I found that 70-75 percent of my son was totally normal, and the other percentages had to do with brain function such as his neutrons and electrons....
ANYONE THINK SOME OF THE ABOVE PROBLEMS CAN BE LYME ASSOCIATED CAUSING OTHER DIAGNOSISES? Please let me know if you have had these type of concerns and my best ways to go about getting a GOOD testing for possiblity of lymes. Thanks so... Mom at witsend.
[ 04. July 2008, 09:36 AM: Message edited by: imahaz ]
Posts: 2 | From New York | Registered: Jul 2008
| IP: Logged |
posted
First off, welcome here. It is a great place for searching out the possibility of your child's symptom's being related to TBI's/vector-borne illnesses.
You can do a search in the top part of the page and should be able to find a lot of information related to this.
There are many parents on here that have children with Lyme and co-infections, and some entire families that have it.
There is also a sticky at the top of this forum posted by Bettyg that is a newbie package that is LOADED with information.
There will be others along to post information that should help you more.....
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I was a congenital Lymie baby.
My toddler symptoms were ALL anxiety, OCD, agitation, fear and psychologically based.
Then came the stomach pain and dark circles under my eyes.
I was in therapy by the time I was 8-years-old because I didn't want to leave my Mother's side.
I came from a wonderfully stable and warm home.
I wasn't diagnosed until I was 34-years-old and I won't bore or SCARE you with years in between.
I say YES, YES, YES, your son's symptoms sound like Lyme and possibly coinfections. I'd take him to Dr. J, for sure.
At the very least, rule it out completely because this is one sneaky disease that can mimic so many other things. Don't waste your money with internists, psychologists, ER visits, etc.
"ANYONE THINK SOME OF THE ABOVE PROBLEMS CAN BE LYME ASSOCIATED CAUSING OTHER DIAGNOSISES?"
Not "some", but "all" of the above problems could be Lyme.
So if you live in an endemic area, more than ever I would take him to an LLMD.
He might have some form of neuropsiquiatric Lyme, and needs to be evaluated by an LLMD and treated.
Stories like yours are not new at all.
There is even an organization called "LIA" Lyme Induced Autism. you should check this......I might post some studies later about Lyme Disease and Tickborne co-infections causing mental illness.
[ 04. July 2008, 10:48 AM: Message edited by: Lymeblue ]
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
posted
This is a press release that might interest you:
"Evidence Mounts Implicating Lyme Disease in the Autism Epidemic
More proof that infections play a role in this childhood epidemic.
(PRWEB) November 7, 2007 -- A new article in Medical Hypotheses, "The association between tick-borne infections, Lyme Borreliosis and autism spectrum disorders" was released this week. Robert Bransfield, M.D., the main author collaborated with top doctors in both fields on this paper such as Jeff Wulfman, M.D., William T. Harvey, M.D. and Anju Usman, M.D.
The summary of the article states that "Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders."
Bransfield et al, examine clinical observations, case reports, laboratory testing of patients with Autism Spectrum Disorder for tick-borne diseases, brain imaging results, epidemiological findings, infections and autism, tick-borne/Borreliosis infections and psychiatric illness and many other factors in this collaboration of research findings.
Numbers indicate that 20-30% of children with Autism Spectrum Disorder may be infected with Lyme Borreliosis and pathogenic Mycoplasma may be a contributor in 58% of cases. With these staggering numbers, families and physicians need education on the proper testing and treatment methods currently available. With these 20-30% numbers representing around 140,000 cases of autism in the United States alone, the human impact of this disease is staggering. Bransfield et al states that "If just 20% of the 560,000 recognized cases of ASD in the US can be prevented or more effectively treated, this could result in a savings of $358 billion in addition to the incalculable human impact of this disease."
The authors recognized the contributions of Charles Ray Jones, M.D. for decades of expertise and dedication in helping hundreds of children with Lyme Borreliosis and autism spectrum disorder.
Parents needing more information on testing and treatment can turn to the LIA Foundation for support. They are a non-profit organization which focuses on research, awareness and education on the multiple infections, including Borrelia/Lyme Disease, and how that impacts children with Autism Spectrum Disorder.
About Autism: Autism is a disorder that currently affects 1 out of 150 children. Boys are the majority of those affected. The numbers of autism cases spiked in the mid-late 90's and continues to remain high. Most children do improve with some sort of biomedical and behavioral intervention.
About Lyme Disease: Lyme disease is generally caused by a tick bite and can is more effective when antibiotics are administered soon after the infection. Borreliosis is a long-term infection that exists and can be undiagnosed Lyme disease or transmitted in some other way. Symptoms include achy joints, confusion, slurring words, word retrieval problems, brain fog, sensitivity to light and sound. Lyme disease in its late stage can be fatal, causing MS like symptoms and debilitating its victims. One of the disorders in which Lyme disease is known to mimic is autism spectrum disorder.
About the LIA Foundation: The foundation was started in September 2006 by parents of children with autism and Lyme disease. Kathy Blanco of Beaverton, OR and Tami Duncan of Corona, CA are the founders. The foundation's goals are to provide awareness, education and research on the multiple-infections such as Borrelia and its connection to autism."
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Up for more replies for Imahaz!
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
bettyg
Unregistered
posted
welcome mom; so glad you found us!! thank you for the wonderfully, detailed post.
please post in SEEKING DR. and show YOU ARE LOOKING FOR A "KIDS" LLMD...
only 10 nationwide: 1 in NY; 2 in conn; 2 in NJ;
show which state you would like info on ok!! *********************************************
copy your entire post above, and PASTE to a NEW POST over there! make sure you go to lower LEFT corner and mark box to RECEIVE ALL REPLIES!!!
i'll see you over ther to help as well!
YES, YES, AND YES! to get background on the other diagnosis vs. lyme, please go to top of MEDICAL and look for a post by TREEPATROL, newbie links archive...
click on there and then look for the name ART DOUGHERTY, who did outstanding work compiling info galore on the OTHER 300 ILLNESSES MIMICKING LYME DISEASE!!!
CLICK ON ART'S LINK, and then look for that type of info; he had it broken down per illness/symptom!!! medical abstracts galore ok!
dr. you saw is ON our llmd, lyme literate md, list!
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.
IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Please rememeber that the paternal bipolar "could" have been undiagnosed late stage Lyme.
It can happen so don't assume he's got bipolar in his genetics when it could be LYME in the genes.
I can say this confidently as my Mother, Father, Brother, sister-in-law, niece, nephew, Aunt, 2 cousins and I ALL had TBD's.
posted
Your son sound just like my 14 yr old daughter! Except she was about 5 1/2 or 6 yrs when things went wild.
She has all the same symtpoms you mentioned in your post. She also had a SPECT scan done in 2001 that came back normal, then a follow up SPECT scan done in 2007 that came back abnormal.
She is on abilify (made significant positive changes, but huge weight gain ) and another med to stop the muscle contractions it causes.
She's also on zoloft for severe depression, suicidal tendancies, and OCD. She had severe and rapid mood swings until starting the abilify (3 months ago).
I cyber school her, otherwise she'd never make any progress in school. She needs so many frequent breaks and we have to go over things multiple times for her to "get it". Then when she finally gets it, she forgets again!
She is due to begin IV therapy in August. She had it when she was 8 too, but after they pulled the line, she crashed and things just went downhill from there.
I've read most patients follow up with oral antibiotics, but they didn't give her anything. I'm praying that she will get better this time as she will be given oral antibiotics as a follow up.
Good luck with your son and God bless you both! It's so incredibly draining to have a child that is going through so much stuff and my family isn't very supportive.
The neighborhood has shunned her as well as most of her family. It breaks my heart to see her suffer so much. She has such a good heart and only wants to make others happy. They just don't get it.
Take care
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
| IP: Logged |
bettyg
Unregistered
posted
princess,
i'm so sorry your daughter has been shunned by family, friends, and neighbors.
please give them the link for UNDER MY SKIN to see the trailer of 5 minutes or ask them to buy it for $35 plus P/H !!
go to SUPPORT and give them the link to my LYME VIDEO COLLECTION; give them specifically ALEX's 4.44 minute video! if that does NOT wake them up.
JUST EXCLUDE THEM ALL; you don't need the NON-SUPPORT bringing you down.
best wishes to both of you and other parents!! your children were BLESSED TO GET LOVING, DEDICATED, UNCONDITIONAL LOVE from you!!
IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Yes is my answer to your questions. We have not had the problems of autism but almost everything else and about 10 others.
So Yes, tick borne diseases can do this. Also neuro toxins and mold. So look for all causes.
Ability is a great choice. My daughter also takes cymbalta and many supplements for brain health. She has brain damage from the buggers.
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
posted
my now 17 yr old was dx in feb 08 after dx of bipolar, OCD, hallucinations, rages etc etc etc!
it was only bc i was diagnosed in fall of 07 that i started putting 2 and 2 together during my research for myself
she was 9 when it all fell apart in her world
have your son tested and go to a llmd for accuracy
your son is still in there - and he wants to come back as much as you want him too!!!!
good luck! its a long hard road but one worthy!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
posted
Bettyg, Thank you so much for your words of support...it is most appreciated! I will do what you suggested and if they don't wake up...leave them behind!
Cjnelson, Is your son better now? Just wondering if he still has the bipolar, ocd, rages, etc. If he is better, what kind of treatment did he receive?
Lymemomtooo, What supplements does your daughter take to help brain heatlh?? Thanks everyone!!
Take care and God bless...
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Sorry, should have typed Abili(f)y.
She is supposed to take Brain Vitale, something from the Amen Clinic for brain damaged patients, she sometimes takes Memory 2000. It isn't nearly as strong but is available locally for us.
She is also to take very strong Omega Oils. Along with a good multi, a good VitD and C. She is also supposed to be on the South Beach Diet and to restrict her sugars and carbs.
There are some things that we haven't taken yet that were recommended. I do not have the book handy but if I have time, will try to also add them. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
![[Wink]](wink.gif)
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)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic