Jump to content
ACN Latitudes Forums

Lyme Test Results for PANDAS Kids


Recommended Posts

Whether all these kids and parents actually have lyme or not; I don't know if it matters. Parents and kids are reporting positive results from the "lyme" treatment and on that note I say that is fantastic news! Even if it turns out down the road much of the lyme turns out to be cross reactivity for PANDAS/PITAND, well then these families have discovered more treatment options for the toolbox and that's awesome too; no harm, no foul. We are all here to get our kids well, not win a Nobel prize in medicine!

 

I tried psych meds for my girl for years trying to get her some relief of her symptoms; meds for bipolar, OCD, depression, seizures, blood pressure, ADHD; if any of them had worked I wouldn't have cared what they called it as long as my kid was well and thriving toward an independent, happy life. But they didn't work and that's why we kept looking and getting more opinions. If the treatment protocol for PANDAS stops resulting in improvement for my girl, you bet I would pursue all possible treatment options available including lyme protocol treatments to get her well.

 

Your son is doing well now, so I don't know if you want to "poke the bear" (pun definitely intended!!!)

 

Good point, JAG. Ultimately, if we find an LLMD who's just open-minded and willing to treat proactively (like our former LLMD who passed away), then that's a big win. We, like you, have tried everything along the way, including a bunch of psych meds that made things worse. But if the psych meds had made our ds feel better, we would've stuck with 'em!

 

And I don't wanna poke that bear - I wanna drive a stake through its bloody heart!!! (No offense to animal lovers. Don't report me to PETA!)

Link to comment
Share on other sites

  • Replies 63
  • Created
  • Last Reply

Top Posters In This Topic

Brian,

 

Hi! I don't post on here much anymore, but, your dilemma tugged at my heart. I know how much you and your family has gone through....I hate to see you potentially get led down the wrong road and/or lose the gains your son has made. Note: I said "potentially."

 

My suggestion: Contact Dr. Cunningham with your sons IGENEX results and a bit of his/your families history. She is neutral, but, also a very informed researcher on Lyme who has presented at Lyme conferences, etc. She will tell you how she sees it without Lyme colored glasses on. I can assure you that most of the LLMD's out there will say your son has Lyme regardless of the fact that the the IGM cross-reacts with so many things and his IGG is negative after so many years (and the Doxy did nothing initially) I could go on about how your sons results, to me, indicate that Lyme is not a factor here, but, I will just be refuted. (hence the reason I don't post much anymore) Please contact Dr. Cunningham...she can explain some things to you and hopefully ease your concerns...and perhaps spare yourself unneeded worry and money..... not to forget to mention the worst(as you mentioned)....removing your son from his needed med to something that will potentially have him lose ground and/or unnecessarily over medicate with unneeded high doses of rotating antibiotics.

 

Oh..your thread asked how to determine "indeterminate" results. Just send IGENEX more money so they can confirm if the popular band 31 IGM (very common) is really positive or not...which...why don't they do that in the first place with the big bucks you already send them???

Link to comment
Share on other sites

My suggestion: Contact Dr. Cunningham with your sons IGENEX results and a bit of his/your families history. She is neutral, but, also a very informed researcher on Lyme who has presented at Lyme conferences, etc.

 

Hah - somebody else PM'd me this same advice, which I thought was excellent. Great minds think alike, eh?

 

I have in fact sent an e-mail question to Dr. C. She's been wonderful to our family over the years since we first sent our ds's blood sample to her for testing. With the Holidays coming up, I don't know when she'll get a chance to respond, but I'll share her feedback via follow-up post when she does.

 

Thanks, P.Mom!

Link to comment
Share on other sites

My suggestion: Contact Dr. Cunningham with your sons IGENEX results and a bit of his/your families history. She is neutral, but, also a very informed researcher on Lyme who has presented at Lyme conferences, etc.

 

Hah - somebody else PM'd me this same advice, which I thought was excellent. Great minds think alike, eh?

 

I have in fact sent an e-mail question to Dr. C. She's been wonderful to our family over the years since we first sent our ds's blood sample to her for testing. With the Holidays coming up, I don't know when she'll get a chance to respond, but I'll share her feedback via follow-up post when she does.

 

Thanks, P.Mom!

 

Great! That is the best thing you could do right now...she'll get back to you, eventually! :) Personally, I would go with what she says. Not to be snooty, but, I met this woman...saw what she does, etc. She is the most brilliant person I ever met. She really researchers her stuff...works non-stop, and is very careful as to what she claims/reports.

 

You asked if strep can be cross-reacting....YES!! Make sure you ask her about that as well.

 

Hey, if you feel comfortable, pm me your personal e-mail. I can forward some tid-bits of info. Cunningham has sent to me about all this. Just a bit....

 

I also wanted to say that when I was filling out the Pepsi Refresh Grant acceptance forms, Dr. C had to fill out some sections regarding who she was, her qualifications, achievements, credentials, etc. The pages, yes, pages, of awards, research, published papers, education, etc. was absolutely staggering. My Dad saw the list too, and was speechless. I really do trust and totally respect her.

 

I do wish you and yours the very best, Brian! Hope you find peace in the answers she gives you.

Merry Christmas!

 

Kelly

Edited by P.Mom
Link to comment
Share on other sites

Worried Dad-

My heart also sank when I saw your post! When my daughter had her first IVIG in June 09 with Dr. K, she was out of control during the infusion. I was so worried they would be unable to complete it. He assured us they could handle her, and told us about a boy that needed the room and himself to be sterilized with Lysol before he would allow any treatment. I didn't mention it to Dr. K, but I knew it was you, from silently lurking on the forum. You have come such a long way and I can't imagine your frustration.

 

When I first received my daughter's positive Igenex IGM (31,41,58-double positive83-93,Ind 34&39), I had a hard time believing she could have lyme. Last year I called the teacher 3 times to let her know someone was about to report strep in the classroom. She always reacted first with an increase in behavioral symptoms. I only ran it, like you, to ease my paranoid mind. Then when I received her results and read that statement, I decided to run EBV, herpes, mycoplasma, and a few other test on her--all positive IGG's. I also ran the 31kda epitome test for cross-reaction, and it was negative. So I thought it must be a false positive! Well, I finally decided to see an llmd (fortunately Dr. J in CT had a cancellation which allowed us an earlier appt) and he ran a bunch of test with Quest & Specialty Lab, which were all covered by insurance. She has Bartonella & RMSF besides lyme. We are currently doing a combination of antibiotics.

 

I think a good LLMD will take in consideration that the XR is working so well. They will probably consider adding a cyst buster, like someone here said.

Good luck with your decisions!

Link to comment
Share on other sites

WD, Please do not overlook the positive Erlichia test. Erlichia can be very serious, and needs to be treated with the specific meds that will address this infection. It is inconceivable to get a false positive Erlichia test. And the fact that you have a positive erlichia, along with a positive IGM on lyme makes a tick borne infection problem more probable.

 

Yes, band 31 may cross react. So a LLMD would rule that out. But your son is also positive on a borrelia specific band that does not cross react. But really, ONLY AN EXPERIENCED DOCTOR should tell you what is likely happening here.

 

For most people who have changed course from PANDAS treatment to lyme treatment – it is simply a matter of changing antibiotic protocols. The lyme board is full of people who have seen dramatic improvement in their children since changing course. You’ve heard it all before… for some there is more than strep. As Philamom said, of course a doctor would take into consideration the improvements made on the augemetin.

 

These are very serious infections (erlichia and lyme, others). And ignoring them comes with a great deal of risk. I do not know what the long term consequences on the body and brain when one has strep/PANDAS. But the long term consequences for having untreated tick borne infections can be dire. (WD, I do know that you understand this. But it needs to be said here).

Link to comment
Share on other sites

WD, Please do not overlook the positive Erlichia test. Erlichia can be very serious, and needs to be treated with the specific meds that will address this infection. It is inconceivable to get a false positive Erlichia test. And the fact that you have a positive erlichia, along with a positive IGM on lyme makes a tick borne infection problem more probable.

 

Yeah, the ehrlichia result is scary. I'm still struggling to understand how to interpret it. The IgG for E. chaffeensis was negative, and both IgM and IgG for A. phagocytophilum were negative. And in the lab report, the positive IgM for E. chaffeensis is at the very low end of positive. And the lab report contains a disclaimer that different rickettsial species can cross-react and cause false positive... but then, maybe any rickettsial species is bad news, eh?

 

In all honesty, there's a part of me that wishes for an explanation of these results that means no Lyme. I'm trying to guard against that "disease fatigue"... but I can't deny it's there. :wacko:

Edited by Worried Dad
Link to comment
Share on other sites

I could go on about how your sons results, to me, indicate that Lyme is not a factor here, but, I will just be refuted. (hence the reason I don't post much anymore) Please contact Dr. Cunningham...she can explain some things to you and hopefully ease your concerns...and perhaps spare yourself unneeded worry and money..... not to forget to mention the worst(as you mentioned)....removing your son from his needed med to something that will potentially have him lose ground and/or unnecessarily over medicate with unneeded high doses of rotating antibiotics.

 

Oh..your thread asked how to determine "indeterminate" results. Just send IGENEX more money so they can confirm if the popular band 31 IGM (very common) is really positive or not...which...why don't they do that in the first place with the big bucks you already send them???

I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly".

 

As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.

Link to comment
Share on other sites

WD: One thing you will need to check with Erlichia diagnoses is elevated enzymes in liver often they go hand and hand. Additionally, our LLMD says there is no low and or high end of positive results. He states that often it is the sickest that have the lower titer response and the strongest that have the higher titers response because they produce a better immune response. So, exactly the opposite of how results appear to read.

 

-Wendy

Edited by SF Mom
Link to comment
Share on other sites

WD: One thing you will need to check with Erlichia diagnoses is elevated enzymes in liver often they go hand and hand. Additionally, our LLMD says there is no low and or high end of positive results. He states that often it is the sickest that have the lower titer response and the strongest that have the higher titers response because they produce a better immune response. So, exactly the opposite of how results appear to read.

 

-Wendy

 

Ah... is that kind of like the chronic PANDAS kids who have low ASO / Anti-DNAse B because they've had it for so long that the titers no longer register? Yeah, I can see that.

 

Sigh. Looks like it's gonna be an interesting New Year. Gotta keep reminding myself that - for whatever reason - our son's doing great right now on the XR, so that's a blessing!

Edited by Worried Dad
Link to comment
Share on other sites

Something else occurred to me on which I'd be interested in getting feedback. When our ds was 6 and we lived near Cincinnati, he came down with a "mystery illness" that baffled the local docs there. His white cell count plummeted to levels where our ped mentioned leukemia, and his legs became so weak he literally couldn't walk; we had to carry him around. No neuropsych symptoms: he remained the same sweet-tempered kid, just looked dreadfully ill. We were terrified. After 10 days, his white cell count started coming back up. The docs never explained it or reached a diagnosis, just called it an "unidentified viral or bacterial infection" that his immune system eventually cleared.

 

Is this familiar to Lyme folks? We did at that time live very near Miami Whitewater Forest and took lots of long hikes in the woods. Yikes.

Link to comment
Share on other sites

WD: I am by no means suggesting this is what occurred for your son at 6 but these are the irregular labs one would have at the on-set of Ehrlichiosis. Unfortunately, you'll never know for sure at this point in time if it was the true cause of mystery illness. I also agree with others, that most LLMD will not rock the boat with what is working and only add to the current antibiotics.

 

"Ehrlichiosis causes a low white blood cell count, low platelet count, and elevated liver enzymes, all of which can be seen on routine blood tests"

 

http://www.lymediseaseblog.com/ehrlichia-humans-curable-disease

Edited by SF Mom
Link to comment
Share on other sites

I think this is one of those topics like religion or politics: it inflames great passion on every side, and people with honorable intentions cannot hide that passion in their posts. I sincerely value the input I've received both from the PANDAS side of the debate and the Lyme side, so please accept my gratitude to those who have shared their perspectives. I admit to being confused and perplexed... but together, maybe we can find the answers. This forum has already given my family more answers than any other info source!!!

 

I've sent e-mails to some of the docs / researchers who have been most helpful to my family over the past few years, asking for their perspectives as well. I'll share those when I know more.

 

Are we havin' fun yet? "PITAND" is sounding more and more like the safest label for what ails our kids - can't wait to see what they call it in the new white paper!

 

 

I could go on about how your sons results, to me, indicate that Lyme is not a factor here, but, I will just be refuted. (hence the reason I don't post much anymore) Please contact Dr. Cunningham...she can explain some things to you and hopefully ease your concerns...and perhaps spare yourself unneeded worry and money..... not to forget to mention the worst(as you mentioned)....removing your son from his needed med to something that will potentially have him lose ground and/or unnecessarily over medicate with unneeded high doses of rotating antibiotics.

 

Oh..your thread asked how to determine "indeterminate" results. Just send IGENEX more money so they can confirm if the popular band 31 IGM (very common) is really positive or not...which...why don't they do that in the first place with the big bucks you already send them???

I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly".

 

As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.

Link to comment
Share on other sites

WD,

 

This is my fear; that folks are leaving the board or afraid to voice their opinions for fear of offending people or being shut down.

 

LLM- I think you have a right to state that your child has gotten more benefit from the $3 bottle of bactrim than 20K in PEX and IVIG. It's your opinion and not nasty towards others choosing to spend their money for IVIG, a treatment you (sort of?) regret.

 

PMom- I think you have a right to question why people need to pay hundreds of dollars for Igenex testing just to have to pay more money to confirm band 31; that seems like a reasonable question of the lab and one I've wondered myself.

 

We, as a community of parents of "PITAND" children have everything to lose and nothing to gain by shutting down or shunning the questions and view points of one another.

 

I think politics and religion was a fitting analogy.....where you end up only speaking with those who share your point of view; how sad that would be for our kids. Well, I'll say it...I don't want a forum where everybody either agrees with the most persistent and popular trend of posting or they just drop off. People who are pro-, con- and unsure about lyme should all speak up otherwise this forum will no longer be as valuable as it has always been.

 

I think this is one of those topics like religion or politics: it inflames great passion on every side, and people with honorable intentions cannot hide that passion in their posts. I sincerely value the input I've received both from the PANDAS side of the debate and the Lyme side, so please accept my gratitude to those who have shared their perspectives. I admit to being confused and perplexed... but together, maybe we can find the answers. This forum has already given my family more answers than any other info source!!!

 

I've sent e-mails to some of the docs / researchers who have been most helpful to my family over the past few years, asking for their perspectives as well. I'll share those when I know more.

 

Are we havin' fun yet? "PITAND" is sounding more and more like the safest label for what ails our kids - can't wait to see what they call it in the new white paper!

 

 

I could go on about how your sons results, to me, indicate that Lyme is not a factor here, but, I will just be refuted. (hence the reason I don't post much anymore) Please contact Dr. Cunningham...she can explain some things to you and hopefully ease your concerns...and perhaps spare yourself unneeded worry and money..... not to forget to mention the worst(as you mentioned)....removing your son from his needed med to something that will potentially have him lose ground and/or unnecessarily over medicate with unneeded high doses of rotating antibiotics.

 

Oh..your thread asked how to determine "indeterminate" results. Just send IGENEX more money so they can confirm if the popular band 31 IGM (very common) is really positive or not...which...why don't they do that in the first place with the big bucks you already send them???

I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly".

 

As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.

Link to comment
Share on other sites

I also agree that debate can be a very healthy way to learn and that everything is not always so black and white.

 

I do want to add that the positive Erhlichia, in my humble opinion, is not as debatable and can be very serious if ignored. On that note, both of my children had babesia and mycoplasma and one had bartonella. The babesia, which is a parasitic infection, can also be VERY serious and is not usually treatable with antibiotics, but rather with an anti-malaria drug. It has been our most challenging infection to eradicate!

 

So, I guess I am saying that taking the lyme debate aside, these coinfections are extremely important to treat and false positives with coinfections are unusual!

 

Elizabeth

Edited by KeithandElizabeth
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...