posted
I was able to talk my pediatrician into ordering a Western blot for my son.It showed positive for 41 on IgG.he has a lot of symptoms similar to mine and I have no idea how long I've had Lyme disease.
Urinates frequently and by that I mean every 10 minutes. he complains that his stomach and chest hurts. He has always has had weird rashes that the doctors have never been able to explain.
he also had to be taken out of preschool when he was two because they said they couldn't handle someone like him and put into a special school for develop mentally behind children.
He is very smart but has a hard time listening you're focusing. Has horrible night terrors, Asthma, and horrible mood changes. He has rage like no 5 year old should have and he has had that for years.Just trying to figure out where to go from here. Do I assume if he does have it that my 22 month old has it as well. this is truly my worst nightmare coming true. But it would explain everything what is been going on with my son for years but no one has been able to figure out.
Posts: 67 | From Delaware | Registered: Jun 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
I'm so sorry your son and family are going through this.
Band 41 does not, by itself, indicate Lyme exposure.
I would definitely investigate Bartonella infection as a cause of his symptoms.
Bartonella can cause night terrors, mood changes, rashes, chest/rib/cartilage pain, stomach pain,etc.
It is very possible to have Bartonella without having Lyme.
Bartonella is transmitted by fleas, cats, ticks, etc.
Please read the following article called, "Saving Our Children: Evaluation and Management of Pediatric Tick-Borne Diseases"
Pay particular attention to the symptoms and physical exam information on page 3:
There are various species of Bartonella, such as Bartonella henselae and Bartonella quintana.
Lab tests can be unreliable, so do not rely soley on a lab test to rule out Bartonella.
I think Galaxy Labs is supposed to be the best for bartonella testing. I read that they test PCR and culture and test for strains that other labs do not look for.
To get proper diagnosis and treatment, your son should see a LLMD.
Conventional medicine Dr's really do not know much about these infections, how serious they are, and how difficult they can be to treat.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Our daughter's Igenex WB was IgG positive for 41 (++) and IND for 39 (which is a lyme-specific band). Definately not a blaring positive. The lyme-specific reaction, although weak was enough for our LLMD to diagnose lyme.
Our daughter was also positive for the coinfection bartonella. Most mainstream doctors will not test for coinfections (babesia, bartonella, ehrlichia, mycoplasma, RMSF).
Your son's symptoms sound exactly like my daughter's. Here is a timeline for her, symptom-wise:
Born 2001. Loss of speech/fine motor 2 weeks after 15 month MMR.
2008 - MMR booster and within a month, an insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, motor tic disorder, aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, severe abdominal pain, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, fatigue, nightly fever.
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.
Jan 2013 - Bartonella IgG titers have decreased from 160 (Jun 2011) to 80. CD 57 remains low (16).
April 2013 - Weaned from abx treatment. Continuing wth Buhner, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure.
Sept 2013 - All symptoms (PANS and pain/fatigue) have almost completely resolved. CD57 45. No flares with viral or other infections. Slight herxing remains with changes in herbal protocols, which will not be discontinued for some time.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
My daughter is very smart also, with a wonderful memory. She remembers everything. She taught herself to read at the age of 2, by following my finger as I moved along the pages reading to her. She couldn't speak, but could point out any word I asked of her.
She took piano lessons for a while until the raging and low tolerance for frustration got to be too much. She never did learn to read the notes, because she couldn't spatially grasp the concept of notes shifting up or down the lines in the measure. She learned by memorizing the teacher's finger movements. When the pieces got too long for her to memorize, she raged.
She is now playing the piano again, and remembers much of what she learned earlier. She is understanding the movements of the notes within the measures, and is really enjoying herself.
Her confusion and inability to concentrate were definately a symptom of her bart infection. With treatment, she can concentrate through anything now. Better than most in her grade 7 class. Before treatment she had to be removed from class for testing (with an EA to redirect her constantly back to her work). She has been on an IEP including speech therapy, OT and PT since kindergarden. Although the IEP is still available for her, she no longer need any accomodation.
Behavioural regression was another big symptom, and resulted in her dx of aspergers. This has also resolved with abx treatment. Check youtube for videos on "lyme-induced autism". This was very real for us, although I think in our case it was bartonella-induced autism.
She never did fit the true symptom list for autism. Eye contact was always good.
Raging was a HUGE symptom for us. This has also resolved.
Urinary frequency also. She was tested many times for UTI, but only positive once.
All of these symptoms continued for years before we found the cause.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Please go to this forum for more information on the autoimmune brain inflammation (PANS) that you will find explains many of your son's psych symptoms:
Our daughter's symptoms were all caused by bartonella. Our LLMD said it was also the cause of her PANS symptoms which have all cleared with abx and MTHFR treatment.
Several of the parents on the ACN forum are using strictly immunosuppressive treatments for their PANS children, which I think is a huge mistake. Immunosupression (steroids) will allow the infections (in these cases, improperly diagnosed as non-existant) to florish. A big mistake I think. So keep this in mind as you read the forum.
Please consider setting up an IEP for your son in school so he can get the accomodations he needs.
Please be very informed on any vaccinations you decide to give your children. Our daughter had a big downturn with her 15 month MMR, which I now realize was from her compromised immune system's inability to react in the expected manner. Our LLMD is very certain our daughter was born with congenital infections, and probably reinfected in some way with her bug bite in 2008.
I was mostly asymptomatic until perimenopause hit at age 45. Many of my symptoms I now recognize as bartonella, and I am treating myself along with our daughter on Buhner's bartonella herbal protocols and finding much relief.
Feel free to PM me.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Our daughter is BETTER. She is happy, helpful, organized, has friends and is a truely wonderful child.
I would not say that she is cured. We continue with a high nutrient diet (Terry Wahls), and herbal protocols.
But she is completely functional. A B+/A student, horseback rider, paino student, Celtic Dancer (aka Riverdance) with no shin-pain except for small herxes with increased herbal protocols. She goes to Girl Guides, does curling in the winter.
She runs, laughs, plays. LIFE IS GOOD!!!
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Urinates frequently and by that I mean every 10 minutes. he complains that his stomach and chest hurts. He has always has had weird rashes that the doctors have never been able to explain.
Just throwing this out there, but are you guys dealing with mold?
When I was a child, I had the frequent urination problem- same kind of thing- every 10 minutes and it went on for almost 6 mos. I also had the stomach, chest pains, and itchy skin. No doctor could figure it out- I even had exploratory bladder surgery! So they said it was psychological.
But recently a doctor told me that the type of frequent urination I had is a reaction to long term mold exposure. My childhood bedroom was covered in it so that made sense to me.
If you read Dr. Shoemaker, he talks about why mold causes excessive urination and other symptoms. I'm trying to find a link to share- maybe someone else has one
Posts: 428 | From Midwest | Registered: Dec 2012
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Several of the parents on the ACN forum are using strictly immunosuppressive treatments for their PANS children, which I think is a huge mistake. Immunosupression (steroids) will allow the infections (in these cases, improperly diagnosed as non-existant) to florish. A big mistake I think. So keep this in mind as you read the forum.
- I agree. I think they are making a huge mistake in using steroids.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Rowingmom, my son has an iep, thank goodness. His rage was so bad about six months ago, we couldn't get any help. We ended up calling the crisis hotline.
They set us up with inhome play therapy that was a joke. He has cyclic mood changes and definitely ocd behaviors. We had him evaluated at AI DuPont which was our last resort and the psychiatrist said she had never seen a child like him before, that he showed signs of so many disorders.
As far as mold, its definitely possible. Webhave lived in three diferent places since he has been born.
Posts: 67 | From Delaware | Registered: Jun 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
jnathan,
Here is another good article I recommend reading about Bartonella.
Dr Breitschwerdt is an expert on this infectious disease.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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