posted
Hello, About 2 years ago myself and my kids (then aged 2 and 4) took Igenex tests. We all got positive WB's. Mine: IGM (CDC and Igenex positive) Theirs: IGG (Igenex positive)
Now, I just had us retested (they have not been treated) and the results were the same, although very slightly weaker).
I wonder if this is typical and to be expected? I also wonder if ever a mother can pass lyme antibodies onto the children and not pass the lyme itself? It is tough to decide whether the Lyme is causing harm to them since it is IGG and can potentially be just exposure from me and not the disease itself. Thanks so much!
Posts: 28 | From Los Angeles | Registered: Jun 2016
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Were you on antibiotic treatment for lyme during the pregnancies? If not, then there is a 50-50 chance that you passed the diseases on to the children. That is not my opinion but the findings of Dr. J--world famous pediatric lyme specialist.
Dr. J. says that this is what happens in 50% of cases if the mother has lyme and is not on lyme treatment throughout the pregnancy. It does not matter which trimester she contracted lyme. The results are the same.
A few years ago at a lyme conference, Dr. J gave a talk on gestational lyme. I took notes and put them here.
Hopefully, they will help you or at least inform you on the subject.
Regarding your question, if your children have symptoms, then the disease is causing harm. If they do NOT have symptoms, then Dr. J would refuse to treat them. He says, "Leave well enough alone." In other words, if their immune system is handling the disease, then let it handle it. No treatment unless the immune system becomes overwhelmed and the child begins to suffer symptoms.
I know another top notch pediatric lyme specialist that says the same. So, no symptoms, no treatment.
If the child has some mild symptoms, this doc might give them a trial course (6 weeks) of herbs to see how they respond.
And, as Lymetoo said, it does not matter if the positive test result is IgG or IgM when we are dealing with lyme. The regular rules do not apply to this disease. So, ignore the IgG and IgM when looking at lyme tests. Just look for positives in either one.
Dr. C's explanation of the Western Blot goes into why this is.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you, I was not aware of my having Lyme disease until my children were tested at 2 and 4, and they were positive so I was tested as well.
My children have a combination of severe psychiactric/mood/violent aggression/OCD/developmental issues that wax and wane sometimes hourly.
There are moments where everything is "normal" and others where they would appear to be psychotic.
Because they can be so normal at times they have not qualified for any type of "diagnosis" but since they can be so disconnected, or aggressive at times one has been pulled out of 1st grade and the other needs a full time aide with him at preschool.
However, besides low blood sugar and low muscle tone I do not see any other "lyme" symptoms.
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(breaking up the post for easier reading for many here)
[ 06-29-2016, 11:29 PM: Message edited by: Robin123 ]
Posts: 28 | From Los Angeles | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you read my notes from Dr. J's talk, you will see that one boy with lyme was violent and a criminal and was about to be taken out of the home for trying to murder his mother.
The mother persevered and when he tested positive for lyme, she got him treatment.
The other boy ran around Dr. J's office continually.
As Dr. J says, the child will appear to have developmental issues, but it is actually lyme in the brain!!!
Your statement "combination of severe psychiactric/mood/violent aggression/OCD/developmental issues that wax and wane sometimes hourly.
There are moments where everything is "normal" and others where they would appear to be psychotic." is a PERFECT description of a child with severe lyme disease affecting their brain. With lyme, symptoms OFTEN change hourly!
OCD can be a symptom of lyme. Symptoms of mental illness can be an indicator of lyme. So, your children have many lyme symptoms and are suffering from them, and so are you and the rest of the family.
See these symptoms on page 9 of the Burrascano Guidelines:
So, that is a second lyme expert telling you that these problems are likely lyme disease.
Here is a third doctor:
" In my view, a child assigned a diagnosis of Attention Deficit Hyperactivity Syndrome (ADH) or PNI (Perceptual Neurologic Impairment) should be evaluated for LD.
A 16 year old boy whose Tourette's Syndrome began at age 5, had Osp A antigen detected in his CSF. LD treatment resolved the Tourette manifestations.
Another patient of mine with ADH had a positive IgM Lyme antibody in the serum. The manifestations of ADH were eradicated while on antibiotics.
Distinguishing causality from mere exacerbation of ADH or Tourette by Lyme is moot, and therefore, I suggest an evaluation LD for these patients.
Parenthetically, the boy with Tourette also had cognitive impairment, familial nephritis with early renal insufficiency and OCD (Obsessive Compulsive Disorder). These clinical features all remitted with antibiotics!"
and:
"Personality changes are nearly universal in Lyme encephalopathy with emotional and expressive incontinence being typical.
Usually there is a baseline irritability which fluctuates. Patients with LD encephalopathy react to even mild degrees of stress with frustration, anger or crying spells out of proportion to the situation.
Emotions can reach escape velocity and rages can become volcanic with a momentum beyond volitional control.
Unpleasantness is inevitable due to volatile tempers, super critical dispositions, and impatience with themselves or others.
Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. Low threshold exasperation in unexpected circumstances is not uncommon."
"LD could cause reversible disturbances in brain physiology through cytokine mediators, direct infection; e.g., encephalitis and perivasculitis, demyelination,
metabolic aberrations within the CNS such as regional hypoperfusion, altered rheologic (flow) characteristics of blood, intracellular acidosis and the depletion of ATP.
Permanent changes may include demyelination or loss of neurons leading to atrophy.
Neurologic complications in earlier reports were said to occur in 20% of LD cases. In my experience, and as published by Dr. Logigian, 90% of patients have one or more of encephalopathy, cranial neuritis or psychiatric changes.
Early in the course of LD, these problems may be absent or muted, but eventually intrude and can become dominant aspects of LD."
As the last quote says, 90% of lyme patients have encephalopathy, cranial neuritis or psychiatric manifestations! And, just know that these are REVERSIBLE with antibiotic therapy. So, I am VERY happy that you have come to this forum.!!!!
Lyme patients know what you mean by "disconnected" and we also have experienced "lyme rage". It is all horrible, I assure you.
Please jump on this. So very glad someone thought to test these children for lyme. Children respond well to treatment. One woman told me her grandchild changed the very next day after the start of lyme treatment!
Please, please keep us posted. We will help you any way we can.
I hope this last quote shows you HOW lyme can cause the psychological effects you are seeing in your children. All patients on this site can relate to the psychological manifestations of lyme disease!
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(breaking up some of the post for easier reading for many here)
posted
I appreciate your reply. Yes I have read all the documents you sent and absolutely sounds similar to my situation. Thank you for your kindness. My youngest also got a positive for bartonella IFA so maybe that is contributing as well. Thanks again
Posts: 28 | From Los Angeles | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You are correct about the bartonella. See this quote from Burrascano:
"BARTONELLA & ”BARTONELLA-LIKE ORGANISMS”-
· CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO.
· Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior."
So, there is your cause for antisocial behavior.
Bart is SO HARD for an adult to deal with. I hate to think of a little one having it.
The good news is that children do so well on treatment. Now, you need to get to the best pediatric lyme specialist you can find.
Let us know if you need help with that. Can you travel to someone great?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the advice TF, greatly appreciated!
Lymetoo: I totally agree and within the last 4 years have tried all the typical dietary recommendations (GFCF, SCD, Low Oxalate, IGG food allergy, and salicylate diets) along with supplements such as coconut oil, curcumin, cod liver oil, high probiotics, etc. Even recently did 2 months of neurofeedback. While these may have helped some I am still in the middle of some deep issues.
Posts: 28 | From Los Angeles | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
See Support Groups on the left side of this page. Contact as many as possible, especially those near to LA. Ask for the best doctor for your kids.
Also, post in Seeking a Doctor forum on LymeNet and give the age of the children. Those in California can give you some good names.
The Calif. Lyme Disease Assn is now located on the web here:
LymeDisease.org
There is lots of info there, including about kids and school. They should be able to give you some names of good doctors.
Ask around a lot to get a really good doctor. Always give the ages of the children because each lyme specialist has different age limits for patients.
Posts: 9931 | From Maryland | Registered: Dec 2007
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It might also manifest itself as PANS/PANDAS. My now young-adult son did not have the psych problems, but involuntary muscle twitches (tics) which went away Lyme treatment.
This is a link from that website specifically about PANDAS/PANS:
You and your dear children need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
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