5 year old test results with lots of symptoms and now a new one

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Sick kiddo
New Member


Date Joined Mar 2017
Total Posts : 2
   Posted 3/20/2017 3:19 PM (GMT -6)   
Hello,

We tested my daughter for Lyme Disease because she really has not been well for a while. Test results came back positive. Is there a specific amount of the different types of bands for Insurance to cover treatment? I will post the bands that came back positive. Also, she woke up with very sore throat this morning and also lymph nodes very swollen in neck and underarms.
Lyme Disease Ab, Quant, IgM 1.45
IgG P66 Ab Present
IgG P41 Ab Present
IgM P41 Ab Present
IgM P23 Ab Present

Lyme IgM WB Inter Positive.
I know nothing about lyme disease so do these results mean she has it minimally or are we looking at a bad case? Any information will help. Sorry if I left anything out, like I said I am new at this whole thing.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3118
   Posted 3/20/2017 3:44 PM (GMT -6)   
Hi! Welcome to the forum, in spite of the negative situation your daughter and you are facing.

Insurance companies differ somewhat, but most require the standard that the CDC set (outdated and useless, I might add) For IgM I believe they require 5 positive, and IgG 3 positive. A ridiculous requirement considering how evasive Borrelia and company are to avoid detection from our antibodies.

I don't think Band 41 is specific to Lyme, it can be any Spirochete form, but 23 is specific.

Drs. that are halfway decent are supposed to rely on symptoms as the bottom line, but you are asking about Insurance. It might be worth asking them, off the record and without identifying yourself if you can, just in case.

Another problem is that Insurance is not good about covering extended use of antibiotics to treat Lyme(although they don't mind covering years of it for acne)

If your daughter had a bulls eye rash at any time, and you thought to get a photo of it, that would be a lot of help dealing with insurance.

If you have time, read over our intro "New to Lyme?......start here". There is a wealth of information in there not only about the different tick borne infections, but tips for helping you help your body through the treatment process, as well as finding a Lyme literate dr. (LLMD) or a Dr. trained in the ILIADS protocol, which is what you basically need to get a comprehensive treatment.


Oh, and it's impossible to know by labs how good or bad the case is, because of what I described above, the Lyme bacteria have had thousands of years to learn self-protection under all living conditions, and their most aggravating one is changing their structure or disguise, and having the ability to hamper our immune function enough that even just a "little" bit found means infected. Like one of our members says, it's the equivalent of being "a little bit pregnant.

Post Edited (julymorning) : 3/20/2017 3:48:22 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 19638
   Posted 3/20/2017 3:48 PM (GMT -6)   
Hi Sick kiddo, welcome to our community!

Having bands 23 and 41 positive - is CDC positive result (according to the Igenex test sheet)

That may qualify her for treatment...but it will most likely be only weeks to a couple months.

If she hasn't been well for awhile..that won't be enough treatment.

I encourage you to seek out a Lyme Literate Dr. (LLMD) and schedule an appointment.

The test results do not show the severity of her disease.
Basically she has it...and it needs treatment.

We encourage all new members to read through the "New to Lyme?..Start Here!" thread (at the top of the page) you will find it at the top of the page.


We can also help you find a LLMD. Just start a new thread titled: "Looking for Pediatric LLMD in/near_____" and fill in the blank.

You can also contact the ILADS Physician Referral:

ilads.org/ilads_media/physician-referral/

In addition you can email me - click on the envelope under my screen name on the left.
I can send you names for your area...but not sure if I have any information if they treat children. But, you can take the names and call the office and ask.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sick kiddo
New Member


Date Joined Mar 2017
Total Posts : 2
   Posted 3/20/2017 4:04 PM (GMT -6)   
Thank you both so much, This is all useful info. Just feeling really overwhelmed with everything right now. I just want to do what is best for her and hopefully we can get past all of this soon...

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1254
   Posted 3/21/2017 8:44 AM (GMT -6)   
I know nothing about lyme disease so do these results mean she has it minimally or are we looking at a bad case?
I think the best way to answer that is how sick your daughter is and how long she potentially has had it. Did she acquire this recently? Was she possibly born with it?

Hopefully, you have found a good, qualified LLMD to help you out.

Wishing you the very best in healing and recovery for your daughter!
Kid#1: Extremely sick for several years, very difficult to treat, but much better lately!
Kid#2: Very sick now despite being treated for years, very bad year
Kid#3: Doing great, minor relapse, but great again (ironically had least and shortest treatment)!
Me: Adv Labs positive 2016 (suspected I passed to my kids) - not as sick as others, mostly battling fatigue, kidney, heart, and yeast issues

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 32566
   Posted 3/21/2017 9:06 AM (GMT -6)   
Hi Sick Kiddo,
Welcome to our community. I"m so glad you found us.

For those of us with these infections, it's a really steep learning curve, so please do ask all the questions you need to here! That's how we can help you the best.

KNOW that testing is very poor - don't let a doctor tell you that your daughter doesn't have Lyme - Band 23 is specific to the organism and only 2 strains of the bacteria can produce a positive on Lyme specific bands.

Please do get your daughters diet in a good place - no sugar, good quality protein, and low carb with no 'white foods' - white bread, white rice, white potatoes, etc.

Please do get her detoxing - as the Lyme bacteria dies off, it releases toxins that build up in the body. In order to counter this, we encourage people to have daily detoxing routines.

You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum. And this is another really good resource for detoxing ideas for Lyme patients:
www.tiredoflyme.com/detox-methods.html

But, there is such a thing as over detoxing. This happens when we move more toxins than our body is capable of processing out effectively. Many toxins are stored in our tissues, and by detoxing, we move them to the bloodstream where we can process them out of our bodies through the lymph system, then on to the liver and kidneys as so on. We have to be sure to add in more detoxing routines slowly and carefully, or we will end up herxing just like we had never been detoxing. This article helps to explain that some: www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)
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