Question Lyme- Igenex results…please give input

[Tnmom]

Hey everyone,

Lurker for a year. Been doing much research and supplements/meds for daughters Pans symptoms (age 8). Not sure when it started- our story is not as clear cut because we think it started at age 4. Have always wondered about Lyme ….anyways, treated for coxsackie and EBV and ?bartonella- 1:64 titer yet that was with Dr. T- and it was only azithromycin for that at the time…..Lyme panel was - except for 41 via Quest.

My husband is finally open to Lyme consideration but really wants HARD evidence (agh) and I finally did the Igenex test…….

Daughters MAIN symptoms are mood swings and neurocognitive decline- processing problems, learning issues, visual and auditory issues and did I say mood swings????

We have done genetic testing- 23 and me and yasko and she is COMT +/+ for both alleles….we have done testing for vitamin deficiency etc and she was deficient in ALL b vitamins….doing supplementation etc for this….much improvement yet I always wondered about LYME….

So the results are here:

 

thoughts? Can Lyme be ONLY neurocognitive…..she doesn't have ANY fatigue or joint pain….its all shoulder and up….if one of her IND from her IgM were + and not IND she would have been positive and if the 39 IND was + she would be CDC positive….. we live in TN- any good suggestion of LLMD?

 

IgM- Igenex negative/CDC negative

 

**23/25- IND

**31- IND

**39 - IND

**41- +

58-+

**83/93-+

 

IgG- Igenex- IND/ CDC- neg

 

28-+

**31-+++

**39-IND

**41-++

 

 

 

[LNN]

I'd say yes, she absolutely has lyme. IND means the band wasn't dark enough to be called positive, but a fainter line showed up. Most LLMDs will call IND a positive - some antigen was recognized by the body to make that band show up. But often a body that's been fighting a chronic infection starts to lose its ability to mount a robust attack, so you'll see a decrease in antibodies over time, even if the infection is still active. It's like being "a little" pregnant. If there was enough to make a band show up, even if faint, then something's brewing. And since she has so many bands, some of which are tell-tale for Lyme exclusively (31), I think any LLMD worth his/her salt would be treating her right now.

 

You may want to review the pinned threads at the top of the Pans forum page that are specifically about lyme. I think there are some links on finding LLMDs in your area. If not, you can try www.lyme.net and click on the link called "flash discussions" on the left of the page. You'll then see a link for "finding doctors" and you can post your location there. Users will then give you suggestions.

 

Yes, Lyme can be neuropsych only. You'll find plenty of families who started on this forum thinking their kids were Pandas only to find out they had undiagnosed Lyme. My son was "classic" Pandas from strep but never got well using IVIG or Plasmapheresis. It was only when we found lyme that he finally got well. Good for you for pursuing!!

[rowingmom]

Here is a good video on the psychoimmunology of tick-borne disease (I would say arthropod-borne).

 

https://www.youtube.com/watch?v=7kG7BHlByeQ

 

DD14's treatment for bartonella/babesia (both lyme coinfections) resolved her psychiatric diagnoses. Please have your daughter tested for these infections as they are routinely found comorbidly with lyme.

[Tnmom]

Hello again,

 

so I want to give a little background. My husband and I are both in the medical field. My husband is finally open to Lyme since we did the Igenex test and my insistence that he read the articles I read! We have done genetic, methylation/sulfuration etc testing….a whole slew of things…we eat organic, cf/sf/gf for years, did shots- no more...…blah blah blah… ( i need to make a bio like rowing mom did - thats a great idea ).

 

We have tested co-infections. she had a bartonella 1:64 titer- indeterminate or equivocal in past year3/15….negative with Igenex2/16- we did treat with azithro for 1 month post the first test…. as well as valcycovir for EBV (that was a DOOZY…major reaction to valcyclovir) all other co-infections have been negative to date.

 

We sent off the Igenex 31 epitope- Positive. SO I am pretty confident its Lyme…well I was before…husband is on page now...

 

OK- my husband does not trust many people- high suspicion. He liked Dr. T because he didn't seem to treat to make a buck and is John Hopkins trained MD. so my husband doesn't want to go see just anybody to treat our daughter. Nor does he want somebody who sees a cold and screams LYME!! He wants an honest, good, well trained MD…. ANY SUGGESTIONS???? You can PM me if need be…...

 

I am open to herbals as well as abx if need be- we are very cautious in what DD is given- she has COMT ++ and many cytochrome P450 errors and does not take to synthetic meds well…..abx or NON abx…..

 

so my question is this, can you direct me to someone you trust to treat your child.….I need help.

 

thanks so much! Verryyyyy thankful for insight and help!

[sf_mom]

Since you are in the medical field you probably recognize the epitope test is a great confirmatory test for Lyme.

 

I thought I'd recommend a few good books for both your husband and you to read. Understanding the disease will help you find a well informed LLMD and save you potentially a lot of time towards recovery. Unfortunately, a month worth of a single antibiotic use of Azithromycin will not effectively treat Bartonella.

 

 

 

Here is great article on Bartonella:

 

http://townsendletter.com/July2015/bartonellosis0715.html

 

 

 

Couple good books:

 

Why I can't get better. By Dr. Richard Horowitz

 

http://www.cangetbetter.com

 

 

Cure Unknown by Pamela Weintraub

 

 

Any Stephen Buhner Book on Lyme and co-infections

[Tnmom]

Thanks for reply,

I have read Buhner and his co-infection book as well as Horowitz. the situation I am in is that since my husband is allopathic medical doctor he is reluctant to send daughter to anyone- he has mistrust of some allopathic AS WELL as LLMD's….….it is so difficult to find good reviews on physicians. my husband wants an MD…. I prefer someone who will include herbals and be willing to be somewhat holistic…and to be open to con infections/mold….

he has gotten Daniel Cameron name….I am super confused as where to go… looking for personal experience and suggestions as to specific people as well as direction on how to obtain names that people recommend… I don't mind PMing if its a matter of privacy.

I have obtained 3 names for TN- this is where I live but I WILL travel out of state rather than go to someone who has LLMD title yet does not have depth of knowledge on the subject.

 

ANY direction/advice is greatly appreciated.

I definitely am looking into herbals in meantime….

thanks

[Pandacubmomma]

Dr. Mae kinaly is amazing w my pandas lyme 7 yr old. She is in southern california but can do phone visits after initials

[Tnmom]

Ok here I go again. So very thankful for replies and even phone conversation. Thank you!

I have been seeing someone to work with supplements for raising immune function/ genetics/ methylation and she is very cautious of us going the aggressive antibiotic route for DD immune system is not strong enough. She recommends getting things more primed and then doing natural herbals etc. the lady is super intelligent and everything she has said has corresponded with my experience. I.e. My DD can't handle certain forms of vitamins and when I got here rec based off genetics she told me to avoid those exact ones... This has happened like 6 times. So I do trust her insight to a big degree.

My question is this if my DD had acute Lyme I could definitely see hard aggressive antibiotics. She is not acute. She is chronic. Minimum of 1 year maybe up to 5. Maybe congenital. That thought frightens me! But I regress.

What's your insight in CHRONIC Lyme. Neuropsych Lyme and aggressive antibiotics vs herbals. I really am interested in any thoughts.

I may post this on a new post since it's a different thread depending on response. I am learning how this forum works and I don't want to monopolize each entry!!

After your multitude of doctors visits is there anything you would have done different if you could? I am trying to figure out which path to go down. My husband is OPEN and willing to see dr Daniel Cameron They will fit us in. I am trying to figure out what to do. Insight into him? Anyone seen him? He usually takes 10 and up. I am certain he will be aggressive abx.

Thanks