My son (11) developed facial motor tics, physician started with PANDAS - and he did test positive for strep in his blood, neg on a swab. 1 week antibiotics prescribed, symptoms subsided. About a month later tics returned. Re-ran tests and included lyme. Also started him on 30 day amoxicillin treatment.
Today we got results, negative on the western blot for lyme, but * positive * on the ELISA (more sensitive?). So here I am.
We have an appointment with a neurologist in 3 days, suggested by the great Dr that called for the tests, and I see that folks here also have IGG / IGM and other test results.
My questions -
What diagnostic tests should he have?
Is there a conclusive test for lyme?
What long term damage may have occured in the year and half undiagnosed?
There is so much to learn, and I will be searching boards, but any guidance is appreciated.
Thank you Scott
Posted by NYStateDad (Member # 30160) on :
correction: positive on the western
Posted by momindeep (Member # 7618) on :
The neuro doctor will probably be a waste of time and money.
There is no one zap-it test for Lyme.
You should get a LLMD ASAP...you can post on Searching for a Doctor thread here on Lymenet and the moderator will send you a PM with doctor/s in you area.
I am telling you this, Scott, to save you a boat-load of misery.
Someone will come on here to direct you on testing, beware, the neuro will probably not do the testing and IF he does, will not know what it means and or will not follow up properly.
So sorry your little son is ill...you have come to the right place.
I strongly encourage you to get a Lyme doctor...this is your very first step if you suspect Lyme...ELISA is positive, so he has Lyme, more than likely, for sure.
Please heed my warning...I will not stand alone with my advice to you.
Come here for support and information...this is the very best place to sort it all out.
Sue
Posted by Eliz428 (Member # 21509) on :
I sent you a private message. Look for the little flashing envelope next to your screen name above the first post on the left.
Posted by lou (Member # 81) on :
So he was positive on WB but not ELISA? Or positive on both? Do you have copies of the test? Get copies of any testing he has had.
I concur with the advice that you should get a lyme doc. It is good that he was tested for lyme and got a positive and some meds. But generally, if your son has been sick more than a year, he will need more treatment than the doc who ran the test will provide, or almost all neuros. You need someone who will be willing to treat as long as needed, not someone who will treat for a specified time and then declare victory, regardless of what symptoms you son has at that point.
If you are doubting what the treatment plan is, ask the doc how long he plans to treat. That should tell you what to do. Was there an explanation for the neuro referral? We are concerned about this because very few of them know much about lyme, despite the fact that it has many neurological symptoms. Sad, but true.
Plus, sometimes the tick transmits other germs too, and non-lyme docs will either not consider them or not know how to treat.
Good luck to you and your son.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by momindeep: The neuro doctor will probably be a waste of time and money.
There is no one zap-it test for Lyme.
You should get a LLMD ASAP...you can post on Searching for a Doctor thread here on Lymenet and the moderator will send you a PM with doctor/s in you area.
I am telling you this, Scott, to save you a boat-load of misery.
She is telling you the truth!! Pass on the neuro unless you have money to throw around and love being confused by stupid doctors.
or cut to the chase and ask for the phone number of Dr Charles Ray Jones in CT.. the best LLMD for children.
If the Western Blot was positive, that is all you need.
Posted by ktkdommer (Member # 29020) on :
Sent PM on a NY Lyme doctor who accepts pediatric patients.
Posted by NYStateDad (Member # 30160) on :
Thank you all for such prompt replies... the battle continues, but now I am not alone. Thank you.
Amazingly, his tics are all but gone after only 48 hrs on oral amoxycillin. He was tic-ing every minute or two just a few days ago when over stressed.
Another part of the puzzle, but the advice I have been given is clear - DO NOT ACCEPT THIS AS A CURE. One good sign - his doc started him on 30 day amox after the relapse after the 10 day last month, and he refered to the ped neuro in NY.
Will update after the dr visits on thur / fri.
** edited out city of LLMD **
[ 01-21-2011, 12:49 PM: Message edited by: sixgoofykids ]
Posted by Lymetoo (Member # 743) on :
Go in expecting the neuro to say he couldn't possibly still have Lyme.
Posted by momindeep (Member # 7618) on :
Scott,
It takes just ONE doctor to say either he does not have Lyme or what little treatment your son is receiving so far is adequate...and the games begin...a game that you could end up loosing.
Take our advice, here. The neuro can muddy the waters for your son to receive proper care...it has happened to so many of us over the years...it happened to my daughter...she was just 13.
Scott,I know you are anxiously for answers about your son...I get that, believe me, I do know how that feels first hand...but take a deep breath and consider what we are telling you here.
I have been in the trenches for over 11 years now, so I know of what I speak.
Sue
Posted by LymeMom Kellye (Member # 24807) on :
Hi Scott, I sent you a PM. The blinking envelope next to your name. Everyone who has posted is 100% accurate.
Before you seen any more docs, you need to watch Under Our Skin. It's a 90 minute documentary about Lyme. It's excellent and will explain so much, espcially why it is vital to your son's recovery to see a LLMD (Lyme Literate Medical Doctor).
Take care and best wishes to you and your family for a full and swift recovery.
Posted by Pinelady (Member # 18524) on :
Agree with them. It is vital to get to a LLMD to get him really well.
Posted by momlyme (Member # 27775) on :
Scott,
I am very close to you and would loan you a copy of Under Our Skin for you to view at your convenience. I suggest you do not watch it with your son. It is not a movie for children.
I have an 11 year old with Lyme. He had the tics you are talking about. He had swelling in his joints and difficulty walking.
His pediatrician prescribed prednisone and wrote "normal gout" in his chart. This happened to us even with a positive Western Blot for Lyme.
He got much, much worse on the prednisone so I made an appointment to see an pediatric infectious disease specialist. I thought she would surely help.
She said my son's pain, difficulty walking, stomach problems, seizures and trouble sleeping were all in his head and he should get counseling or be admitted to the pshych ward.
Then, she tested his blood again.
Another positive Western Blot. When she called me with the news, she stated that she still thinks he has been treated adequately and no further treatment is needed.
By then, I had found this website and had a pending appointment with the doctor I sent you information on.
This ID doc who treated my son with such cold, uncaring disrespect... wrote in his chart that he has psychiatric issues.
Medical charts don't go away. Take your positive lyme test and see a doctor that knows about lyme. The ones who don't will make recovery more difficult for your little boy.
I will never forget my son looking at me and saying, "Mom, you don't think I am nuts, do you?"
No child should have to endure this disease.
No child should have a doctor doubt that he is sick when he IS SICK!
The doctor I sent you does not have long waiting lists. Let them know your urgency and they will get you in ASAP.
Chin up. You have found a good place in this forum.
Posted by NYStateDad (Member # 30160) on :
Thank you all for advice - it is appreciated
Update... saw under our skin, read cure unknown.
WB results back, tested pos on bands IgM 23 / 41
after 48 hrs on amox motor tics are gone, scrip is for 30 days
adding probiotics (OTC) to diet
making appt with LLMD asap
Scott
Posted by joji442 (Member # 29076) on :
This message read like a thriller. Thank goodness you accepted all of the heartfelt advice!
Good luck to you and your son!
Posted by Remember to Smile (Member # 25481) on :
Thanks so much for letting us know how your family is faring, Scott. Great news about your son's improvement on amox!
Heather, Scott, Sue, Kari, all...
I'm overwhelmed by your Love in action. You are Saints of the new Lyme-Green World (LGW), as are our LLMDs and Lyme-Aware people helping any way they can...
You, your children, families and neighbors remain in my thoughts, heart, and prayers.
Bless you for helping me with a gentle detox. Tears are a release of toxic chemicals... I cried, but now i Smile