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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme Results Help

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Author Topic: Lyme Results Help
Booklover
Junior Member
Member # 50293

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Hi there.
I'm hoping someone can help me read my six year old son's western blot test (LabCorp). I was told he tested negative. However, there are several things that have me wondering....


His result of Lyme Ab/Western blot Reflex is .93 which is listed as "high" under flag. Also, his IgG p41 Ab. Is listed as Present Abnormal. Everything else was listed as absent.

If he is negative, why would he have this abnormal band? Anyone have thoughts on this? My son has been experiencing:

high levels of anxiety, mental confusion, difficult sleeping, pain in neck, headaches, panic attacks, pains in different body parts that come and go, tics in hands and face.

The doctors believe the conditions are psychological. As it can be difficult to tell with young kids- I think it might by Lyme. He has had several tic bites over the past few years.

Anyone have any thoughts? Advice?

Thank you!

[ 05-10-2017, 10:02 PM: Message edited by: Booklover ]

Posts: 2 | From Massachusetts | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Welcome to Lymenet!

In order for anyone to send you information, you need to enable receiving private messages (PMs). That is how we correspond, because this is a public forum.

Click on "My Profile", check the box under "Your Preferences" which says "Enable Private Messages", then click 'Update Profile".

It's good to also check that you want to be notified by email when someone sends you a private message.

Your son's symptoms sound like Lyme to me, but I am not a doctor. Lyme is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on symptoms, medical history, tests, etc. I would get him to a LLMD a.s.a.p.!

Here is a link for the Western Blot Explanation" written by one of the top LLMDs:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

Here is a link for symptoms by the top LL Pediatrician:

https://sites.google.com/site/drjoneskids/symptoms-literature

"It's all in your head" is a very common "explanation" when the non-LLMDs can't figure out what is going on. Many here have experienced this.

LabCorp & Quest tests aren't reliable. Your son should be evaluated by a LLMD and tested through IGeneX in Palo Alto, Ca, which specializes in tick-borne illnesses. My son only had Band 41 positive on the Quest test and IGeneX found more.

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.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. He needs to go where they are.

Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

I will send you some Lyme doctors' names & info when you enable PMs. What part of MA are you in?

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/MassachusettsLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

http://www.lymenet.org/SupportGroups/UnitedStates/Massachusetts/

Here are some links for you with good information about Lyme and children:

http://www.childrenslymenetwork.org/

https://sites.google.com/site/drjoneskids/symptoms-literature

https://sites.google.com/site/drjoneskids/home

Here is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

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 this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8727 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

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Sounds like it. I hope you see a Lyme-treating doctor soon.

Also, I think it would be a good idea to have him develop some tick protection habits so as not to get bitten anymore, if possible - like bug repellent on and some avoidance habits.

Posts: 12984 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Booklover
Junior Member
Member # 50293

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Thanks for the links, ettiquette, and the advice. We live in Concord, MA. How do I find a good LLDM nearby? I can go into Boston- it's not too far.

Is it possible/common that the majority of symptoms be neurological and not physical?

As far as prevention, we spend a great deal of time hiking and tics are unavoidable. Everyone in our family has tested positive at one point or another [Frown]

Thank you so much for all your help.

K

Posts: 2 | From Massachusetts | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
t9im
Frequent Contributor (1K+ posts)
Member # 25489

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Hi Booklover:

Unfortunately you are now entering the world of the Tick Borne Disease controversy, including Lyme Disease. You will have to learn the controversy within the medical community is what it is and have to deal with it. Much easier said than done.

I am a parent like you and we first took our daughter to both Hartford Childrens (for pediatric IDSA MD) and Boston Children's hospital (pediatric Neurologist). She also only had band 41 (which is the antibody reaction to a spirochete, not specific to the Lyme spirochete) at the start.

Good luck and I will send a PM later as regards a couple of LLMD's.

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

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Sent you a PM with names of LLMDs in MA & CT.

Borrelia burgdorferi, the bacteria which cause Lyme disease, can cross the blood/brain barrier and cause physical as well as psychological problems.

Posts: 8727 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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