When my son was 4 he got bit by a tick. First symptoms were numbness in fingrs and legs and memory problems, confussion and other congnitive symptoms. Its been almost 5 years and he went from being completly normal to autistic.
He's been on zithromax on and off for the past 2 years and each time he begins treatment he has a herx reaction and i see improvement but eventually he goes right back.
The past week he has been saying he feels like he dreaming and forgets everything, even when he says something. He cant pay attention, doesn't understand when talked to, very emotional, depressed, angry....
I don't know what to do anymore. I am 100% sure its lyme causing all this but feel so helpless as a mother.
Has anyone gone through this and know what my next step should be??
Thanks,
Jill
Posted by unsure445 (Member # 15962) on :
These symptoms can creep in slowly and its easy to blame them on other things like growing and hormones.
You need to get your son to the best lyme literate doctor that you can.
Many have long waiting lists but often get cancellations. I have heard of several llmd's that see patients of all ages offer cancellations to kids first.
Hope he get get on a path to recovery soon. Is your son on any treatment right now?
Posted by jjill eaton (Member # 37406) on :
Unsure,
Thanks for the quick reply:) Yes he has been on zithromax for a month. On day 3 he was a different kid... talking, laughing, smiling... I literally just stared at him all day. It was amazing. Day 5 he was running around making noises and flapping his hands. Now he is exhausted mentally and physically.
I will look into finding a good llmd.
Thank you
Posted by AuntyLynn (Member # 35938) on :
jjill -
Have you posted on our "finding a doctor" thread yet? Post for your State/area. People here have lists of LLMDs by area - I'm sure they'd be glad to share them with you.
Glad to hear the Zithro seems to be helping - but don't let him over do it! Epsom salts in a comfortably warm bath will help his body to detox from the die off of bacteria. Also, you could encourage him to sip a few drops of fresh lemon juice in a glass of water a couple of times a day.
Best luck to you and your dear little boy!
Posted by canadianmama (Member # 36298) on :
Just wanted to say hello and send love and healing to you and your family.
My 12 year old was also bit when he was almost 4, only last year we realized he had lyme.
I also second the detox to help him get well.
There are lots of great people here on lymenet to help with your questions as you help him get his health back.
All the best.
Posted by glm1111 (Member # 16556) on :
PLEASE look into treating him for parasites/worms. It is now being recongnized at the recent ILADS conference by Dr. H. as the number one coinfection. Dr. K. treats all of his patients FIRST for parasites and SECOND for Lyme.
Detoxing although important will not eradicate this infection. Google parasite symptoms and take a look at the Humaworm site for more info. One mos of tx is never enough and testing is unreliable.
A lot of people on this forum are finally making progress treating this coinfection with antiparasitics after yrs of abx alone were not working.
I hope this helps give some clarity as a possible explanation as to why your son is not getting well.
Gael
Posted by Ellen101 (Member # 35432) on :
I also think you need to look into getting him treated asap by a good llmd. I would not do any parasite treatment without the guidance of a doctor. Parasite treatment can be very dangerous and it is risky to treat on your own as an adult let alone treating a child.
Posted by lax mom (Member # 38743) on :
Jill: If you are using your real name, you may want to reconsider.
My son had lyme-induced autism. He was treated with antibiotics with an LLMD for several months. He is now maintaining his progress with a DAN/ARI Dr on supplements alone.
Cleveland has an autism specialist who was trained a year ago through ILADS. He found the connection between his autistic patients and Lyme disease. He also has an autistic son. I have met this doctor as my sister and nephew travel from Tampa to see him. I will private message you with his info.
I know it is really hard right now, but I believe with the right doctor and treatment plan things can turn around. My son, without autism, but many neurological symptoms, is proof of it. Your son is young and with an immune system that can fight the disease.
Best wishes,
Posted by dmc (Member # 5102) on :
Have you video taped him before antibiotic treatment and after? It may help the doctors see how quickly the antibiotic work for his symptoms.
Posted by hopingandpraying (Member # 9256) on :
PM sent for CT & PA.
Posted by docluddite (Member # 36032) on :
It would be worth the $ to test his vitamin D level.
Posted by paulieinct (Member # 17514) on :
I urge everyone with an autistic child to go to the ILADS.org website and watch the presentation from last month's Boston ILADS conference describing the case of an autistic child "cured" by antibiotic treatment.
The presentation is given by the child's father, who describes his son's descent into autism after MMR vaccine. He presents videos of the child before and after MMR, and before and after Lyme treatment. They are DRAMATIC, alternately heart-breaking and thrillingly positive.
I believe it will be found that autism has an underlying CAUSE and a TRIGGER. The trigger can be any trauma: vaccine, hypoxia, accident, etc. The underlying cause, I believe, is always infectious. The infection can remain dormant indefinitely until a trigger causes it to become active.
There is a cost to watch the videos. You can buy the entire 2-day conference for $197, or just buy individual presentations. They send you an email with a link to the video. You can then watch it as often as you like.
Posted by Keebler (Member # 12673) on :
- Links paulie suggests above in in the links below but to start, the top three for you:
What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posted by Keebler (Member # 12673) on :
- Certain foods additives or processing methods can exacerbate symptoms (and even outright cause some).