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» LymeNet Flash » Questions and Discussion » General Support » Worried About Friend's Son

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Author Topic: Worried About Friend's Son
jessicabooklover
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Hi everyone. I am worried about my old friend's son who is 3 years old. They live in Oregon now and have for about 6 months. In the past few months he is experiencing unexplained rashes that look A LOT like Bulls eye rashes, headaches, insomnia and vomiting.

My friend T has taken him to the pediatrician and he even had a CT scan but nothing can be found. He did have a Western Blot from Quest which showed the 41 band to be positive but Dr said that was "insignificant".

My friend is convinced her son's problems may be psychological because pediatrician said that it was a likely scenario because he "does not have a father and is acting out".

I want to tell my friend that I strongly suspect lyme to be behind her son's illness but I am overwhelmed as to how to approach her. Do I send her literature? Speak of my own struggle with it?

Do I send some links to stuff about Dr J? How would you approach helping a friend who now seems firmly convinced her child's problems are psychological that he may have a severe infection that could kill him if left untreated?

Thanks in advance for any guidance. This friend is very special to me and has helped me so much throughout my life. I would love to be able to assist her now. Jess

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dbpei
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My LLMD (a neurologist) told me that Band 41 is indicative of lyme disease, oral spirochetes or syphilis. It is the most common borreliosis antibody. Some LLMD's consider Band 41 alone to indicate lyme disease.

Here is a printable flyer that includes information on pediatric lyme disease from the LDA

http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_Brochures/ABC_2009.pdf

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lax mom
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Have her watch UOS.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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beaches
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Hi Jess!

Send her info on Pam Weintraub's book...

http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378130/ref=sr_1_2?s=books&ie=UTF8&qid=1368324093&sr=1-2

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Keebler
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There is no MD who knows the truth about lyme in Oregon. They've been instructed to by the ISDA strongholds in the the state, especially at the top hospitals and the medical college - to dismiss all talk of lyme from any patient - ever.

Even children have been turned away after tick-bites WITH the classic bulls eye rash because "there is no lyme in Oregon."

Oregon It is one of the very worst states in which to need any care regarding lyme or other tick-borne infections. There are multiple instances of sheer medical abuse, ignorance and neglect - I know that all too well, personally speaking.

Your friend should connect with one of the support groups to get the names of the LL NDs - or get out of state to a LLMD ASAP.

Share this with your friend:

http://lyme.kaiserpapers.org/oregon.html

Lyme Disease in Oregon

The Kaiser Papers - not by or from Kaiser Insurance but about how they deal with lyme inquiries

Also gives background regarding lack of lyme assessment / treatment in general, regardless of one's insurance coverage.

OREGON SUPPORT GROUPS listed at BOTTOM OF PAGE

(There are zero LLMDs in Oregon. Yet, there are several ILADS-educated LL NDs (naturopathic doctors) in Oregon.

There are both some LLMDs & LL NDs in California & in Washington state.)
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Keebler
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They might appreciate this set of links:


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

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme


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

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

"Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines." (detail from a poster here who had trouble with a doctor who had claimed to be LL and an ILADS member but, after some time and money spent, it was clear he was not, not at all).
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Keebler
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Your friends also needs to be aware to keep their mouths shut about this to others. There have been cases of children being taken away from parents (or attempts made) who went out of state for treatment.

The parents need to be very well educated about this and keep quiet about it to anyone who could "report" them - regular doctors, teachers, neighbors . . . anyone.

This happened to someone I know in Oregon. Teachers "reported" the parents for long term treatment since the child did not get better right away and feeling so ill during the treatment.

Munchhausen's is a very real threat. Sad, but true. Just best to be aware to NOT say anything more, especially to the child's current doctors. Just leave them behind - AFTER getting a hard copy of that test and other records that may be needed.

Just say they are for "personal records" to be organized.

Sounds like your friend has sole custody, with "no father" however, if there is another parent with custody and they are separated or divorced, - they MUST pull together and become educated on this together.


http://www.psychologytoday.com/articles/200708/munchausen-unusual-suspects

Munchausen: Unusual Suspects (lyme & custody discussed)

- by Pamela Weintraub
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Keebler
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"Psychological problems" (as the doctor leaves it) in a 3-year old? "Acting out"? Just how does a child "act out" rashes? And no kid likes to vomit. It's not an attention getting device for any young child.

The child's behavior - or more correctly, symptoms - is merely communication that something is wrong.

If your friend want to be a good parent, they must learn to trust their child and what their child's body is telling them.

Lyme and other Tick-Borne infections can cause all kinds of symptoms that fall anywhere on the AUTISM SPECTRUM (for anyone of any age).

Pass this on to your friends as another option to find the qualiifed LL doctors they need for full assessment:


http://www.lymeinducedautism.com/

LYME INDUCED AUTISM FOUNDATION
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[ 05-12-2013, 04:31 PM: Message edited by: Keebler ]

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Keebler
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Oregon Support groups given above. For adjoining states:

http://lyme.kaiserpapers.org/washington.html

Lyme Disease in Washington

Scroll down for WASHINGTON SUPPORT GROUPS at BOTTOM OF PAGE

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

On-line support (and to see what others' suggest) through www.LymeDisease.org -

http://www.lymedisease.org/resources/referrals.html

Doctor Referrals

http://www.lymedisease.org/resources/support.html

On-line support for those in CALIFORNIA above, other states below.

http://health.groups.yahoo.com/group/YOURSTATENAMELyme

Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state.
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t9im
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Hi Jessica:

I don't know how to help you with your friend BUT the Pediatric IDSA MD who wrote the paper on chronic lyme being psychosomatic in the NE Journal of Medicine indicated my daughters symptoms were psychosomatic and that she didn't have lyme disease.

We didn't know about the controversy then. When we finally had a WB with the readings she had bands 30 and 41 positive with others being reactive.

In 1986 Dr. Alan Steere developed the Centers for Disease Control criteria using symptoms and what is known as the Western Blot. The Western Blot is a measure of specific anti bodies against the Lyme borrelia.

In 1986 if one had symptoms and had one reactive band it was considered indicative of an underlying borrelia infection . The paper identified band 41 as typically the first one to be reactive.

(The research paper issued was Craft, Fischer, Shimamoto, Steere, Antigens of Borrella burgdorferi Recognized during Lyme Disease).

This was followed up and supported by another paper in 1988.

However, by 1993 Dr. Steere and the CDC felt Lyme disease was being over diagnosed and over treated.

(Steere AC, et al. JAMA. 1993;269:1812-1816)

In 1994 at what is known as the Dearborn conference the CDC established ``surveillance'' criteria based upon research published by Dr. Steere and Dr. Dressler .

Band 41 indicates the presence of a spirochete bacteria.

Long answer but you are on the right track.

--------------------
Tim

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jessicabooklover
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Thanks so very much everyone for the responses. Jess
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Keebler
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Rather than send your friend all these individual replies, you might just send this thread's URL so they can follow the discussion for themselves (herself).

They can better connect to the links posted, straight from this thread - less copying & pasting required. And you don't have to constantly follow it, she / they can - or just pop on for easy study.

The sooner she / they can find a lyme support group near them, the better. I hope that she will be able to find some sort of good advocate or "guide" from such a group.

You may not be comfortable sharing just where in Oregon she is - but if it's okay with her to do so, someone here who may be close might be able to offer some specific guidance, too. Oregon is a huge state.
-

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Keebler
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LymeToo recently posted this EXCELLENT short introduction

http://www.youtube.com/watch?v=Nhgmeb5y7Y0&feature=share

Three-minute video at YouTube

- explains the controversy and suggests the documenary "Under Our Skin" - linked in threads above.
-

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lululymemom
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Well i wouldnt say the infection might kill him.. Thats being a bit of an alarmist. I would just email her this link and have her look up the symptoms. www.canlyme.com

The site now shows the different rashes that appear with the illness.

http://canlyme.com/lyme-basics/symptoms/

[ 05-14-2013, 12:36 AM: Message edited by: lululymemom ]

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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rzh1
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If you could post pictures of those rashes,I think that would help alot.
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map1131
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Children & Lyme & co-infections

This is the best and simplest info to start with.

http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_Brochures/ABC_2009.pdf

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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jessicabooklover
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Thank you again so very much everyone. Jess.
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