posted
Hi everyone! I am new here and have a question about my son and lyme disease.
I just wrote a long post and it got deleted..aahh anyway to make a long story short, my son was bite by a tick two years ago. A month later he started to have strange behavior changes, he could not concentrate, bad memory, he said his hands and feet feel picky.
doctor said doesn't sound like lyme.
sympoms have come and gone (not completely) more times then i can count in the past couple years. A week ago they started again. He does not repond when talked to, like he doesn't understand or will answer but not make any sense.
Has anyone seen these symptoms? could it be lyme disease? i suppose this could just be his personality but i believe there is something wrong.
posted
Well I learned the hard way never to believe any doctor 100%, to do my own research, and to go with my gut feelings.... Poor doctor must have missed the part where they mention that at least half the people DO NOT get a bullseye rash!
Posts: 758 | From now TX | Registered: Mar 2001
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posted
It is not too late to test your son, but keep in mind that unfortunately the lab tests are not always accurate.
I would pursue answers thru an LLMD... perhaps even Dr J in CT. Other people here may be able to recommend someone closer to you though.
Posts: 758 | From now TX | Registered: Mar 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Please find a LLMD Just In Case! This is a horrible disease. I have a 6 year old and I could not even imagine her having to go through this-my heart would break.
Find an LLMD get him in there to be seen and evaluated and go from there.
Kids present with different symptoms-and I read somewhere they usually start with behavior symptoms.
posted
I agree do not ignore it. Better IMO to treat it then to wait. I waited with my younger son who had symptoms on and off and I wish I would not have. He was 9 and is doing well now on treatment but I think he may have been done with tx sooner if I would have gone with my gut instincts.
My older son was having symptoms and I started him on abx right away and he was symptom free with in months. He was treated for a over a year and is doing great now and off abx for 8 months.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
To quote Dr. Joseph Burriscano: "Always think Lyme" (when the circumstances surrounding the symptoms are indicitive to the possibility)
-------------------- 5 yr. Vet. of the Lyme war. Helping and sharing are now my only objectives.I have nothing to sell & I no longer interfear with things I cannot control. But, I have learned many good things from my affliction & am a better person for it. Posts: 51 | From Northeastern PA | Registered: Jul 2010
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onbam
Unregistered
posted
It absolutely sounds like lyme. will pm you with my message for the new folks.
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quote:Originally posted by buzzsflybox: To quote Dr. Joseph Burriscano: "Always think Lyme" (when the circumstances surrounding the symptoms are indicitive to the possibility)
Yep. I'll go with this. And, I have two kids with congenital lyme.
My kids were dx when they were 12 and 4. Wish I would have seen an LLMD sooner.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi - I have three young children with lyme and they had all of these symptoms and more. I would bet $$$ that Lyme and coinfections is the cause in your son's case. I would not wait. The good news is that he can be cured and his old personality will come back. It will take time though.
Read as much as you can on this site and get him evaluated ASAP. There are so many different options in terms of treatment. I started my kids on abx and they made huge improvements. Then after 2 years I transitioned them to the Nutramedix herbs and they are doing even better.
I would look into finding a pracitioner who does electrodermal screening, which is very helpful. Do a search on this site to read about this. And I would also find an LLMD. There is a good LLMD in CT (Dr. M) who trained under Dr. J and would not be a long wait to see. PM me if you want more info.
Best of luck to you. Read as much as you can. I had to diagnose my children, as my pediatrician was ignorant about Lyme. She kept steering me away from it. Don't let doctors do this. They are wrong about lyme!!!!! You will see after you read more.
Do a search on this site for my old posts under both "tickbattler" and "tick battler". I have many posts about children and symptoms, etc.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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my sons lyme test that his pediatritan ordered is negative (nurse wouldn't give details of test)and his doctor referred me to a neurologist who wants to do a sleep deprived EEG. Is this test for seizures?? Can it detect lyme?
I am in the process of finding a LLMD but was wondering if going through a neurologist is even necessary.
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
First I would get a copy of the tset result, but I am not surprised it is negative. The longer that you are sick with lyme, the less likely you will get a positive test.
Most importantly, see if you can get your ped to do an Igenex test. You can order the kit and take it to the local hospital where they can draw his blood and put it in the tube from the kit. Then you mail it to Igenex with the requisition form signed by your ped (You first need to get it signed from your doc and take it with you to the blood draw). The only thing your ped has to do is sign the form and give you a copy of the results, since Igenex will only mail results to a doctor.
You can get help here on interpreting it.
I think the first thing to do is get to an LLMD. I don't think a neurologist will help much, unless he/she is lyme literate. I think there is a lyme literate on in CT. Dr. K?
I see you are in NH. I have heard there is a very, very good LLMD that sees children in VT. Send me a pm if you are interested.
Hope this helps,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
As a mom of three with Lyme... I'd get him tested and treated. Even if testing is neg.
My son had behavior changes and it's been tough to deal with.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Yes to all the advice given already. I was tested and it also came back "negative" but, I had three highly positive bands that no one paid attention to.
That, coupled with symptoms is more than enough for a clinical diagnosis. You should get copies of the results and consult an LLMD.
I just had my 18 month old son tested. He has a "negative" test but a few positive or IND bands. We are currently looking into further testing as he is having a few symptoms.
Lyme is not the only problem as well. THere are co-infections too. I'm sure my son has whatever parasites I had that I had not yet treated when I was pregnant with him but since we don't know what they are, we can't test for them. Only treat based on symptoms.
Posts: 1104 | From N.California | Registered: Jan 2008
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onbam
Unregistered
posted
Those symptoms after a tickbite mean lyme and/or coinfections. It's that simple. The tests are absolute crap, and miss about 70-80% of all cases, so a positive is actually kind of like winning the lottery. http://www.lymeinfo.net/medical/LDSeronegativity.pdf
I know this sounds a little strange, but there is actually a coverup of the realities of lyme disease:
underourskin.com undertheeightball.com lymecryme.com and the links in my signature do a good job explaining it.
This researcher is very good--however, apparently, and I posted about this a few days ago, so you should be able to find it with a search, a Swiss researcher name Martin Seivers contended that Samento in fact made Lyme worse. I would at least treat with the Banderol, though.
You should get him to a doc known to us to be lyme -literate. I'll pm you some in my region, for what it's worth.
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I have 3 doctors in my area that i am trying to get my son in to see.
I'm up late watching home videos and the difference in my son just weeks after his tick bite is unbelievable. i'm so mad that i put this off so long, but hope to God we get answers quickly.
To those with children with lyme, if in fact my son has lyme disease, what is the prognosis? will he ever be the way he was? Can a childs brain handle this type of infection at such a young age?
It scares me to think that right now he could have infections in his body. I haven't been able to sleep good, this is all i think about.
The soonest appointment with a lyme doctor is not until the end of August. I don't know if i can wait that long.
If you don't mind, I would like to hear your personal experiences of having a young child with lyme disease.
A little over a year a go my son started pulling his hair out, he had huge bald spots. I kept his hair cut for a while and it seemed to stop. He started doing it again, i'm going to cut his hair but was wondering if anyone else has experienced this.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
One of the keys to the treatment is the knowledge about the disease. It has a way of shutting off the immune system to let just about everything in, and many things can go undetected as well as Lyme.
You can use this time well by finding ways to boost the immune system and learning all the things that can hinder it from being able to fight. Mushrooms and yogurt has worked for me as well as vitamin C, and E.
Most of us also find something that works for us to fight virus' that have gotten in as well as possible other parasites. I use Coconut oil, and others use herbs.
Lyme is never just about lyme and in your sons case if he is exhibiting the neuro symptoms of the tingles I would think he has had it for over a year---
There are some fantastic people here who know ways to treat the co-infections without making damages, and get through the herxes while on antibiotics.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
My son is 6 years old and went undiagnosed for almost 2 years. He was bit by 2 ticks a few months before his 4th birthday. He developed a motor tic 6 months later (has had several since then) and emotional lability followed.
My son did the hair pulling thing also for a few weeks. This was actually just a few months ago that he did it... after we started antibiotic treatment. He was also sticking fingers in his mouth. I considered these to be OCD-like behaviors and feel pretty sure they have something to do with the Lyme, though I haven't talked to his doc about it yet.
I would also encourage you to get your son tested through IGeneX. My son tested negative according to CDC criteria, but positive according to IGeneX criteria with some very specific indicators for Lyme on the test results (bands 31 and 34 on his IGG test). If you don't know what the western blot bands are all about, I'd encourage you to read up on it. It is really important to know what they mean... more importantly, that your son's doctor knows what they mean.
You can still request a copy of the test results that you already had done, but they probably won't show the results for bands 31 and 34 if done through a commercial lab such as LabCorp or Quest. As others have said though... the test results aren't the final answer. An LLMD will need to do a thorough evaluation.
Good luck!
Posts: 57 | From VA | Registered: Feb 2010
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posted
Pinelady: thank you, i am trying to learn as much as I can about the disease. I can't believe how complex it really is. I hope to soon get answers and maybe get my son back!
JT's mom: My heart goes out to you and your son. How is your son doing now that he started on antibiotics? Have you noticed a change in his behavior?
My son sometimes sucks on his fingers too. He is very emotional, cries all the time and i can't reason with him. He doesn't understand simple things that a 6 year old should understand. It's so frustrating but I'm trying to be patient with him.
ALL: My son has a sleep deprived EEG scheduled for August 11th. will that show whether or not he has lyme?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Here is some of the findings to look for -- 8 patients had concomitant peripheral nervous system involvement with electrophysiological evidence of multiple root lesions with an acute or subacute course.
In Lyme I did not feel human. But a shell of a person, it is soooo frustrating. So he may not either. Today your hands may hurt, tomorrow your belly, the next day your eyes...It is h@#@. Children seem to respond a lot better than adults.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi jeaton183:
Our daughter also didn't have the erythema migrans rash she also failed the Elisa blood test (the initial screening test used by the labs when a MD orders a non specific lyme test).
This started our journey of 8 MD's (4 Pediatricians, 1 pediatric infectious disease specialist, 2 neurologists, 1 rheumotologist) 3 childrens hosipitals and 8 months before we visited a family doctor who indicated LYme and we then saw DR. J.
She also failed a western blot but on a subsequent WB from Igenex was positive on 2 bands with 2 indicated.
Most MD's only know what they've read in journals based upon the infectious disease society guidelines, stuff like if Elisa is negative then you don't have lyme, need tick on you for 36 to 48 hours, etc.
Note Elisa gives false negatives 30% of time (one older analysis had this at 45%) the EM rash also shows up less than 70% of the time and a UNH research indicates the tick infecting white mice in 15 minutes.
I recommend you read Dr. B's Advanced Topic in Lyme, find a LLMD and think Lyme with co infections until its ruled out.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I highly recommend you purchase this (link below). It is a special edition of a magazine called Lyme Times....lots of good info (scientific) for the price, all about Lyme in children.
I think it would help you to see the symptoms listed out on paper.
The good news with children is that they often will respond better to treatment than adults or teens, as I recall. The earlier in life you treat, the better. So treat as soon as possible! Look into coinfections too like Bartonella or babesia. A good Lyme doctor will do that. I would especially consider Bart, even in the absence of positive tests, because of the hair pulling. Good luck!
For Bartonella in children, they'll often use Bactrim DS (remember, I'm not a doctor). So if the doctor doesn't recommend that one....that is something you can push for later. The doctor may want to work on just Lyme first, before going after potential coinfections like Bart. But I'd like you to keep it in mind for later. Bactrim DS pairs well with Zithromax.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Bactrim DS pairs well with Zithromax.
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