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» LymeNet Flash » Questions and Discussion » Medical Questions » I think my daughter has lyme....

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Author Topic: I think my daughter has lyme....
tickle
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I posted this on another forum, but I am so eager to get as much information from as many angles, so here is my concern:

I have been diagnosed with lyme, and we don't know just how long I have had it.

My 10 year old daughter, while healthy, has issues that have baffled us for years.

I found a list of symptoms that mimic ADD/ASD, and it looks like a snapshot of her:

http://www.n-e-t-s.org/MD_Presentation_110608.pdf

Hers include:

- Auditory Processing Disorder
- Attention/concentration
- Delayed or disrupted language development
- Communication skills
- Speed of information processing
- Working memory


These things have baffled the teachers, learning specialists and ourselves since she started school. The thing is, because of her troubles at school and in socializing, she was tested extensively and found to have a huge I.Q. She is now in a class for gifted students. The strange thing is how long it takes her to express an idea, to process information, and so on. She's about as forgetful and disorganized as a person can be.

If she does have lyme, then she likely contracted it during gestation or breastfeeding, since I never recall her having a tick and also I have lyme, so I probably passed it on to her.

Do her symptoms sound like those of a child born with the infection?

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philly78
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Wow. I could have wrote this post about my now 12 year old son! He has been diagnosed with "high functioning autism" per the school, ADHD and sensory processing disorder.

He has lots of troubles in school but has a very high IQ and is in the gifted program as well.

After I found out I had lyme, I started to suspect he had it as well. We eventually both made it to see Dr. C and lo and behold....he has lyme, possibly babs and the "fry bug" and is currently in treatment. She thinks I have had lyme for quite some time and that he has had it since birth.

We are making slow but steady progress. Another interesting thing I found out is that my son has something wrong with his COMT pathways? Don't ask me the details though because we still need to go for our next appt and find all that out.

From what little I did read though, he has trouble detoxing the very med we have him on for his attention problems. The goal is to get him off that med this summer. He had the detox genomics (?) testing done and that is how we found that out.

My son has trouble expressing his thoughts too and big problems with writing. He usually types most things. As bright as he is, he writes like a 2nd or 3rd grader.

And talk about being forgetful! I have never seen anything like it. He tells me he often feels like he just doesn't know what is going on around him.

My son has a HUGE problem with sensory issues. I implemented some of the things mentioned on the following site and it helped.

http://www.sensory-processing-disorder.com/sensory-integration-activities.html

He has learned how to cope a bit better with some things.

I'm rambling on now, and from what little you wrote, our children seem to have very similar problems! I would get her tested.

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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Alexandru Matei
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Hi,

I have had ADHA as a child, as a teenager and now as an adult, I struggle to keep focus on anything but everything. (also had OCD as a child but I didn't know what it was back then). Now I have ADD, ADHD, OCD, anxiety, PTSD, depression sometimes and "a sort of bipolar" states, it's not bipolar but severe mood swings because of my bodily symptoms. I basically keep a fight up to act normal as everything is ok, lol.

Psychiatric issues are "NORMAL" with Lyme disease. Late stage Lyme disease, especially in older people can cause Alzheimer and dementia. (basically ADHD is just a joke of what the borrelia bacteria can do to someone's body if it's not eradicated).

Alex

--------------------
Lyme Disease
Boala Lyme
Borrelioza

~ I was possibly infected when I was 5, un-diagnosed until adulthood, developed severe symtoms at 19 ....

~ Currently on natural protocol.

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dal123
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Some of the kids I worked with had these issues, all had methylation issues, etc. When some were put on vancomycin for C. Difficle, even though a ton of homeopathy was already tried, we saw gains in speech processing, etc. Diet is very important, plus get IGENIX testing, may need to do a "an antibiotic challenge",.
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tickle
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Well, tomorrow I'm taking my daughter in to have some blood taken to send to Igenex.

In some ways I hope she's positive, then we have treatments we can use. Yet, in other ways, I hope she's negative, because this can be so hard to treat and/or cure.

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Keebler
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-
I'm really toast right now and can only post this relating to the sensory stuff.

Be VERY, VERY careful about typical sensory therapy as some techniques are WAY too much for someone with lyme. WAY TOO MUCH.

Any professional you/she works with MUST be ILADS "educated" and fully lyme literate -- in that they REALLY know the science of it all, familiar with all ILADS presentations and writings from the start to today.

If they are not, they just can't possibly provide safe treatment or therapy. Even for sensory integration therapy, especially for that, actually.

Lyme changes everything. So does a stressed liver and exhausted adrenal system that all go with lyme.

---------------------------


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

------------------------------

http://www.canlyme.com/

Canadian Lyme Disease Foundation
-

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Keebler
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-
You say you hope the test is negative. Sorry, but it's just not that simple. While Igenex is excellent, a negative test means nothing in the presence of symptoms, history, exposure, etc.

Still, everything is not lyme, so be sure to look over this thread for other similar things to consider.

But, where there is lyme, there are usually other infections, too, and unique conditions that lyme causes. Lyme is usually never "just lyme."

-------------------------------------


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (and/or whatever else it might be)

===========================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor
-

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Keebler
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-
Please don't be put off by the title. Many with lyme (kids and adults) fall somewhere on the Autism SPECTRUM. I sure do, with cognitive and sensory issues.


http://www.lymeinducedautism.com/

LYME INDUCED AUTISM FOUNDATION
-

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Keebler
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-
http://www.townsendletter.com/FebMar2006/lyme0206.htm

THE BIOCHEMISTRY OF LYME - details toxicity

---------------

http://cassia.org/essay.htm

When To Suspect Lyme Disease

(and how to make sense of symptoms during it)

by John D. Bleiweiss, M.D.

---------------

http://www.thehumansideoflyme.net/

The Human Side of Lyme

- explores the neurological and toxic ways that lyme and other tick-borne infections can affect emotions, thoughts and behavior.
-

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tickle
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Thanks, Keebler. I have some reading up to do.

I know about the co-infections, and those are constantly changing targets, too - as they seem to mutate and produce new strains almost daily, and some tend to grow resistance to conventional treatments.

I have been giving her supplements for her liver and immune - vitamin c, milk thistle, magnesium (actually started magnesium on her because she tends to get constipated very regularly and it's helped with that perfectly) and a few other non-treatment-type herbs.

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tickle
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Another question I have, is how can I safely detox her? I'll ask the Naturopath during our visit tomorrow, but I always like to hear more than one opinion on everything related to lyme and co-infections!
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Keebler
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-
Licorice is said to help block the borrelia toxin, according to the authors of that BIOCHEMISTRY article above.

But that can be too excitatory for many with lyme. DGL (Deglycyrrhizinated licorice) might seem the logical alternative but that has the very part that is to help removed.

A good LL ND can make a formula with licorice that will be balanced enough to not be too excitatory.

----------

You all are probably clear of additives but, just to be sure:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors

-----------------------------------------------

Excellent to consider the importance of "detox"

Rather than "detox her" - liver support is the place to begin.

MILK THISTLE is the basic start - an you are on board with that and other basics, too.

I know that term is popular here but I just cringe every time I see but the word and the process used as an action verb.

And, you may well get it as you asked "how safely"? but - with some the alternative media focus written by those that are pushing this or that product, "detox" has become an action buzz word. Many "detox" methods can be too harsh, IMO.

Is the ND you see LL? Regardless, they will know about liver support and other methods to help her body better process waste.

And most NDs would not push it, though some might.

Most will individualize the plan for the patient. But I've seen some NDs who suggested methods that were devastating to my body because they were not LL.

A LL ND is best. One who is ILADS educated. That way, they will understand the toxicity issues and patient weaknesses.

Heavy metals, parasites, candida - all issues that need extra care with lyme.


The reason I get all upset with "detox" as an event is that it can often be WAY too much. Ongoing, liver, kidney, lymph support and ongoing self-care /habits are best.

There may be a few safe "detox" "activities" but it's not just about that - mostly - ongoing practices that achieve a balance that the person can manage.

I know I can't explain my thoughts very well and it's sometimes just a matter of how that word is defined. Just not too much, too fast, too often -- slow and steady will win.

Still, decisive measures are needed. LL NDs will know this.

In the TINNITUS thread above, 3/4 of the way down are some liver support posts to consider.
-

[ 06-11-2012, 05:43 PM: Message edited by: Keebler ]

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Keebler
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-
In addition to all the links above - to save to your research / study desktop computer file:

Here's another that may hold many answers for you, regarding "detox" methods.

Low heat infrared sauna would be ideal were that to be in the budget. That's number one on my lotto wish-list and one of the best investments anyone can make.

But massage is also excellent. Families can learn from a LMT and then work on each other - for basics.

===============================

When considering herbal / nutritional / adjunct methods:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present.

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

-----------------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL & SAFETY links,

BODY WORK links with safety tailored to lyme patients,

LOW HEAT INFRARED SAUNA detail,

BIONIC 880 (& PE-1) links, and

RIFE links.
-

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TF
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Here are notes I took from a talk given by the foremost pediatric lyme specialist in the world, Dr. J.

Perhaps it will help you decide whether or not it sounds like your daughter has lyme:

2011 ILADS Conference, Toronto, Canada

Pregnancy & Tick Borne Diseases: Gestational Lyme

Dr. J 10/28/11

Impulsivity is an earmark of children born with lyme. Lyme is a multi-system disorder. It can wax and wane and change. It likes collagen (valves), nerves, and joints; it is almost always tick borne

HIV, CMV, any infection in mother can be transmitted to the fetus.

If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on. 30% of these children will have developmental delays.

Tissue PCR biopsy is more likely to be positive rather than a test of bodily fluids (blood, urine, spinal fluid, etc.). Test placenta and foreskin remnant.

Some of these children are classified as autism spectrum early on due to their failure to progress. These children do NOT experience regression as is often seen in autistic children. If antibiotics help them, it points to lyme as the true diagnosis.

He described 2 patients. One little boy ran around his office. He had never spoken. It was doubtful that he could understand what others said. But Dr. J. noticed that the boy made good eye contact with him, which autistic children will not do. He took his face in his hands and said to the boy, I am going to unlock your brain. The next time the child returned, he ran to Dr. J., put Dr. Js hands on his face and said, Thank you for unlocking my brain.

The other boy had committed a long list of crimes, the most serious of which was attempted murder of his mother, and was about to be removed from his home due to his crimes. The boy announced that nobody was taking any blood from him. Dr. J. gave him a choice--either give blood or have a wrestling hold put on him. He put the hold on the child lightly and the child asked for him to stop. Then, he jumped into Dr. Js lap and hugged him (while Dr. J. patted him down for contraband) and cried profusely for about 2 minutes. When asked why he was crying like this, the little criminal said, Nobody has ever given me a choice before! This boy was diagnosed with lyme thanks to the persistence of his mother.

Treating the pregnant mother: There is less than 1% transmission of the illness if the mother is treated with 2 antibiotics during the pregnancy; 25% rate of transmission if she is treated with just one antibiotic; and 50% rate of transmission if she is not given antibiotics at all.

It doesnt matter what trimester the mother becomes infected. These are the statistics.

A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement.

Some medications he suggests for the pregnant mother include 1,000 mg amoxicillin every 8 hours for months, also mentioned IM (intramuscular injections), ceftriaxone (? not sure of this--something that started with ceft but not ceftin), etc.

The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed.

He mentioned that a lab known as Advanced Laboratories can now culture for the lyme bacteria. Western Blots test only for exposure, so this is a much better test.

He said that a father can infect a mother. In in vitro fertilization, a father infected the embryo, but it was not part of a study, just anecdotal.

He quoted Dr. H., If the mind doesnt know, the eyes dont see to explain how lyme can be missed in these children so that they are misdiagnosed.

One month of amoxi should be given to the mother if she is bitten while breastfeeding.

To treat bartonella in children, give them zith and/or Bactrim, ciprofloxacin in an older child.

Antineuronal antibodies can be found in infected children. If they are found, treat the child with antibiotics. The child can have strep antibodies also. He uses various meds including IV Gamma globulin, if needed.

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tickle
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Thanks for so much valuable information!

I am lucky, I just happened to have an infrared sauna, which I bought before I knew about lyme. So glad I bought it.

And thanks for the warning about detox as a verb. I'll continue to support her liver and so on, and see what the LLND says about it. Our LLND consults with a Doctor up here in Canada who was forced into retirement because he refused to follow the guidelines when treating lyme and co-infections. I feel we're in good hands.

Oh, and the site you linked to, Keebler: www.thehumansideoflyme.net - great reading there!

[Big Grin]

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Lymetoo
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more info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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tickle
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I am SO sorry to hear your kids have suffered so much with lyme.

I do give my daughter a kefir smoothie with chlorella and mushrooms, but I haven't given her any antibiotic or anti anything herbs yet. Also I have been given her fish oil capsules and curcumin.

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tickle
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Yeah, she is right into it with me, ever since I was diagnosed. She's very interested and asks a lot of questions. She's always been a very easy child, loves her veggies, etc. One out of four isn't bad. lol Her brother and sisters are all grown up with kids of their own. She's my late in life blessing.
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lymednva
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I was just reading through some of my Lyme files tonight and came across one that has a list of symptoms of congenital Lyme.

Much of what you listed is in that article. It's too long to copy here, and I do not have a link for it, although it may have come from the Public Health Alert, as it was written by Scott Forsgren, a frequent contributor.

--------------------
Lymednva

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tickle
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I have the Igenex results for my daughter, I'll make a new thread to post the results, because they are a little puzzling. She is IGG Positive, though.

So what now?

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tickle
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I just received the Igenex results for my daughter.
She's positive.
AND she thinks it's cool, because she hope to be more neuro-typical.

Naturopath prescribed a couple more supplements, wants to up her vitamin c to 'bowel tolerance', and do some kind of natural, antibiotic cleanse.

I agree with all that, but I want to start treating it more aggressively, before the lyme 'explodes' and makes her very sick. Right now the only symptoms other than what I outlined (ADD and so on) are headaches and I have noticed she gets worn out and tired more than she used to.

I appreciate all thoughts and advice!!!

Having a child with lyme brings this to a whole new level for me. [Mad]

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tickle
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Sorry for all the duplicates. I was posting last night and the board wasn't working well, then it just stopped working at all - at least for me.

It won't allow me to delete, so I'll just have to look like a complete dork with all the duplicate posts. D'oh!

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