posted
My oldest son and I have tested positive for lyme and have been treated by an LLMD. My younger son, age 12, has been diagnosed with inattentive ADHD and some anxiety. He has been tested twice for lyme (elisa and western blot) by labcorp, with absolutely nothing. His behavior makes me think there is something going on in his brain that is not right. He has many of the symptoms of neuro lyme.
If he was your son, would you pursue the lyme aspect of this with either consultation with an LLMD or MDL/Igenex testing?
Seems like this disease is very common amongst family members due to their similar activities and exposure. Plus, IMHO, I do believe that lyme can be passed from Mother to child.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
If he were my son, I would absolutely get him tested through Igenex. You might be able to get your GP to sign the order.
That way, if you end up seeing an LLMD you'd be walking in with a positive test result and not have to wait to start treatment.
Posts: 88 | From NE | Registered: Apr 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In this case, I would want the new lyme culture test done on my son.
I think this is the best test we now have. So, that is why I would want that test done.
I would also take him to a good lyme doctor for his opinion. I would not be surprised if that doc decided to try him on a course of antibiotics to see what would happen.
His reaction could be dramatic and would be all the proof you would need.
"Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7 of Burrascano Guidelines)
See especially that last sentence. With this disease, sometimes you have to treat it to find out if you have it!
Based on the little you have said, I think it is well worth the money to find out if his anxiety and ADHD would actually go away with lyme treatment.
I once suffered with anxiety, and I would not wish that on anyone.
So, think over how long you believe you have had lyme (did you have it when pregnant with him?), how long you have noticed these symptoms in him (was he "normal" up until a certain date, or was he sickly from birth), and how many other lyme type symptoms he has.
Has he added more lyme symptoms as time goes by? things like that.
After all, you are in a state full of ticks, so you know he has had the opportunity to be infected, perhaps more than one way.
And, Burrascano says the ELISA is useless. Also, Labcorp lyme test is pretty bad. So, don't put any false feeling of security in these tests.
At Burrascano's lectures, he always recommends Igenex, and, of course now, the new lyme culture test he was in part responsible for getting created.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Anyone else?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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ktkdommer
Frequent Contributor (1K+ posts)
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posted
My advice is to get the testing done soon and treatment if needed. Puberty and Lyme disease are a horrible combination for our teens. Everything feel apart for my son between ages 12 and 15. Puberty can be a trigger. If he has Lyme and not that sick, with puberty he may show more and more symptoms and feel terrible.
Best wishes,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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t9im
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Hi Hoops123:
I agree with TF on trying the culture test from advanced labs. But even if this is negative it does not mean you don't have it.
I would also do the Igenex WB. Remamber even one positive lyme band indicates exposure and 41 indicates a spirochete (just not specific to lyme).
Of course I'm sure funds come into play as the above will cost you a quick $1,000.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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shazdancer
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posted
It is not unusual for children to have cognitive and psychological symptoms when infected by tick borne diseases, Hoops123. Off the top of my head, troubles can include the following:
Cognitive -- speed processing, executive functioning, auditory processing, character recognition, character reversals, word retrieval, visual processing, short-term memory -- any of these can be be caused by tick-borne disease. Neuropsychological testing can point these out.
Psychological -- anxiety, depression, irritability, new-onset tantrums, lethargy, obsessive-compulsivity, oppositional defiant disorder can all be caused by tick-borne infection.
In addition, the child may be experiencing some pain, headache, or other symptoms but, with the brain fog and long-term pain, a child may not remember what it feels like to be without pain.
Cognitive-psychological Lyme is late-stage neurological Lyme, and may not show up on standard blood tests because the immune system has been suppressed by the disease. You might try the new culture test, or you might simply try a treatment trial to see if he experiences improvement (after a Herxheimer, closely monitored because psych symptoms may occur or increase).
So yes, I would pursue the idea that it might be tick-borne, but I would take him to the LLMD in my area (and symptoms can be quite geographically specific, so it helps to take him to the LLMD closest to you, if possible). And yes, been there, done that, successful outcome with my child years later.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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glm1111
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Member # 16556
posted
Hoops,
Not negating getting a Lyme dx, but knowing what i know now about parasites, I would first try some antiparasitic herbs and check the symptom list at Humaworm. They also have childrens doses. Anxiety and ADHD are high on the list.
FTI, parasites need to be treated for more than thirty days, unlike what Humaworm suggests.
I would research everything about parasites and do a search on here. Lyme has a Major parasitic component to it, and using antiparasitic herbs and salt/c is what got me well after yrs of abx did not.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you all ! Great tips and advice. I will follow up with my LLMD.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
I found out my son had lyme while I was rifing. Those who are not sick will not react to the frequencies
I've been dealing with this dreaded disease for 5 years now. did all antibiotics-IV, IM shots, orals-4 years straight
Rifing now and much better. I had my son tested so many times and he was always negative
Took him to my nautropath and he has everything I have. Treating him now with rife and antimicrobials
Posts: 298 | From usa | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Look into OmegaBrite fish oil for the attention deficit and anxiety.
The very high ratio of EPA helps to reduce inflammation and increase the integrity of the cell membranes. This means the brain cells will get more bloodflow, more oxygen and nutrients. The brain will work better!
Also, supplemental magnesium may help the anxiety. And eat foods high in magnesium: Almonds, almond butter Dark chocolate Beans, kidney beans, baked beans, bean soup, bean burritoes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
You might also check into MTHFR issues, leaky gut syndrome, gluten intolerance/celiac disease.
There are kids who have been healed of anxiety and ADHD with the GAPS diet, vitamin supplementation and/or gluten avoidance.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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Running a bunch of medical tests. So far, only MDL lyme results back and only band 41 on IGG.
Debating about effectiveness of neurotransmitter test or just put that $$ to medical care.
Went to presentation last night where a few of the ILADS board members spoke. Felt like they were talking to me personally as all of the behaviors are my undiagnosed son. Basically, they said that the testing is useless anyway since it only shows exposure.
Wondering if I should take him to the Ilads trained psych for evaluation of TBD but they don't treat and will send you out to an LLMD like Dr H in NY or Dr C in PA.
This disease is absolutely the worse.......
Posts: 749 | From State full of ticks | Registered: Dec 2008
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