Is Igenex a valid test- PANDAS/LYME

[P_Mom]

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

Just letting people be aware there IS another side to this. Please be careful.

[philamom]

I have to disagree here---IGENEX does NOT ONLY test for Lyme specific bands. As you state, "CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot criteria:"---all of which Igenex tests for!! And quite honestly, what has sparked my interest in this is that there are many PANDAS kids who's Igenex results have been posted (including mine) -- many of which have positives for 41, 58 and 66. What would be really helpful it to know what those 3 bands cross-react with...and bingo, maybe we'd have an avenue to pursue for the pandas!

 

UNDERSTANDING LYME WESTERN BLOT

 

There are eight known Bb specific kda western blot antibodies (bands):18,23,30,31,34,39,83,93. Only one of these is needed to confirm evidence of exposure to Bb and can confirm a clinical diagnosis of Lyme disease. CDC Western Blot IgM criteria includes only two Bb specific bands for IgM (23,39) and excludes the other six Bb antibodies. CDC Western Blot IgG criteria includes 18,23,30,39 and 93 and EXCLUDES bands 31,34, and 83. It does not make sense to exclude ANY Bb specific antibodies in a Lyme Western Blot IgG and to include only two of these antibiodies in IgM. CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot criteria: 28,41,45,58 and 66. This leads to the possibility of false positive Lyme Western Blots (with CDC). There can be NO false positives if only Bb genus specie specific antibodies are considered. This does not make sense.

 

This was in a handout from our LLMD.

 

Igenex only test for Bb specifc antibodies.

 

Daughter: positive Igenex IgM; negative co-infection panel. Went on to find positive Bartonella thru Specialty Lab and positive RMSF thru Quest.

Yes, you are right...my mistake! In my dd's result, I am more concerned with the ++31,++34 and ++83-93.

[philamom]

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

Just letting people be aware there IS another side to this. Please be careful.

Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda

[philamom]

I apologize if I have offended anyone-

I scheduled my account for deletion.

I think leaving this account open will only do more harm than good. Sorry that I caused harm and came off as disrespectful. It was by no means my intention. Best of luck to everyone. I have just edited all my posts into "."

Please do not delete your account! I was excited when I saw your heading (what has/hasn't worked) in the PANDAS forum, only to sigh in despair when everything was deleted! I never had a chance to read it. I appreciate being informed in many different angles...it's how we become smarter & stronger. Why do you think the PANDAS doctors constantly comment on the amazing parents of this forum!

"Together, we will conquer, Divided, we will fail" -- Even if we disagee on many things, there is one common denominator we all share= getting our children (or self) better!!!

[P_Mom]

I apologize if I have offended anyone-

I scheduled my account for deletion.

I think leaving this account open will only do more harm than good. Sorry that I caused harm and came off as disrespectful. It was by no means my intention. Best of luck to everyone. I have just edited all my posts into "."

 

 

FR88!!!

 

Please don't let yourself be pushed off the forum! YOU were not being at all disresepctful. Disrespect is when others can't take or accept other people's views or opinions. I know...I have experienced it first hand. If you disagree or question anything Lyme...you are marked and you better watch out! We have lost so many great PANDAS posters because of this. It is really tragic. I almost left, too. But, I will keep fighting for PANDAS and sharing my opinions and points of view....regardless of who likes it or not. We can't let it become one-sided,SPEAK UP.....please keep sharing your experiences. We all need insight from someone who has been there!

[Fixit]

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

 

did you ever do a dot blot???

is this true of the dot blot too????..or is dot blot a MOre Specific test...been trying to search it..but i can't find anything comparing different tests..what they measure better etc...mind you its saturday and all the kids are home!!!

[P_Mom]

You can be sincere in your thought and sincerely wrong.

 

 

Agreed!

 

 

She had high camk, and high antineuronals. Never, ever strep. Tested repeatedly for titers -- never had one strep illness, never had one positive titre test.

 

Please, you are stating your experience with PANDAS. But much of what you are posting about lyme is flat out wrong.

/quote]

 

 

What I have learned is there are no clear cut answers even when it comes to Lyme. So, telling someone they are "flat out wrong" is harsh...and is discourages people from posting and sharing. (remember you called me a bully??) People are leaving the forum.....

 

 

Now, the first part of the quote. Let me share my OPINION on it. A child going through life and never having strep is dang near impossible. It is those parents/children who claim to never of had strep...well, those are the ones I become most concerned about. Let's apply the Lyme theories (because that is what most of this Lyme and PANDAS stuff is...MOSTLY theory)...anyway.....it has been said that the sickest children are the ones who don't produce antibodies to Lyme. Now, can't you then have a very sick child from strep and not have antibodies/titers to strep? And, can't you have numeruos negative Lyme test results and still have Lyme? Well, then, can't you have numerous negative strep tests and still have strep?

 

 

 

 

Fixit...there are no accurate Lyme tests. All of them are flawed. (just like PANDAS) I would be very careful if I were you.

Edited January 8, 2011 by P.Mom

[P_Mom]

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

Just letting people be aware there IS another side to this. Please be careful.

Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda

 

Melinda,

 

I have no experience with RMSF, so, I can't give you any answers. From what I read, though, most people become hospitalized from RMSF......was there a time when your child was severly ill? (not talking tics or ocd...I mean severely ill that she had to be hospitalized?) Anyway, I don't know if it is possible to have RMSF and never know it....perhaps.....like I said...don't know much about it. But, given the inaccuracies of tests these days...I would probably get a second opinion, maybe even a third, on the RMSF thing......and I would go to someone neutral who doesn't see tick borne disease automatically. And I am glad your daughter is doing better.....regardless!

[eljomom]

How do we find "neutral"--I really would like to see someone like this. NOt someone who kicks you out the door if you are not "CDC psoitive" but not someone who makes everything Lyme....anyone? beuler?

 

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

Just letting people be aware there IS another side to this. Please be careful.

Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda

 

Melinda,

 

I have no experience with RMSF, so, I can't give you any answers. From what I read, though, most people become hospitalized from RMSF......was there a time when your child was severly ill? (not talking tics or ocd...I mean severely ill that she had to be hospitalized?) Anyway, I don't know if it is possible to have RMSF and never know it....perhaps.....like I said...don't know much about it. But, given the inaccuracies of tests these days...I would probably get a second opinion, maybe even a third, on the RMSF thing......and I would go to someone neutral who doesn't see tick borne disease automatically. And I am glad your daughter is doing better.....regardless!

[philamom]

My daughter had a positive Igenex IgM (3 positive bands & 3 IND). I was originally told by a doctor that this must be a new infection. Then our LLMD explained to us that if you have chronic (persistent) lyme, it can continue to stay in the Igm. Our goal is with the proper treatment to push it into a positive IgG.

 

 

This is EXACTLY what I was told 3 years ago with my positive IGM and negative IGG. 3 years later, and, after 2 years of intensive antibiotic treatment (including IV), I continue to test IGM positive and IGG negative. It has FINALLY been determined I never had Lyme and will most like test positive IGM forever. Just something cross-reacting. (they suspect EBV) It happens a lot with IGM. I was positive even by CDC standards.....with all 3 "specific" Lyme bands positive.

 

Just letting people be aware there IS another side to this. Please be careful.

Thanks Pmom! I appreciate your side as well! All I can say, is after 22 months since this last episode began, I am finally seeing real results. But honestly, I do like hearing all opinions. So what do you make of my daughter's positive Quest RMSF? (I'm asking this in true honesty...not sarcasm) --Thanks- Melinda

 

Melinda,

 

I have no experience with RMSF, so, I can't give you any answers. From what I read, though, most people become hospitalized from RMSF......was there a time when your child was severly ill? (not talking tics or ocd...I mean severely ill that she had to be hospitalized?) Anyway, I don't know if it is possible to have RMSF and never know it....perhaps.....like I said...don't know much about it. But, given the inaccuracies of tests these days...I would probably get a second opinion, maybe even a third, on the RMSF thing......and I would go to someone neutral who doesn't see tick borne disease automatically. And I am glad your daughter is doing better.....regardless!

Thanks! No severe illness here. And the Bartonella thru Specialty lab? I'm tired of the endless doctors appts. If my daughter wasn't responding to treatment, I would seek more answers, but right now the lyme treatment seems to be working!

[P_Mom]

Melinda,

 

Then, by all means, if it is working....stick with it! (whatever the cause)

 

best wishes!

 

kelly

[LNN]

YOU were not being at all disresepctful. Disrespect is when others can't take or accept other people's views or opinions. I know...I have experienced it first hand. If you disagree or question anything Lyme...you are marked and you better watch out!

Disrespect - to show contempt for, insult, offend

 

I have no problem with anyone who wants to question or debate facts. It is extremely healthy. However, I doubt you would remain silent if someone were to describe your personal story as a "claim".

 

I have no qualms with anyone who wants to question lyme testing, treatment or wants to express an opinion different than my own. Sometimes we learn and are able to change our own thinking because of new information. Other times, I may just move on to another topic on the forum. But I will continue to speak up, as you do, when I feel a line has been crossed and an opinion is worded in a way that shows disregard for (not disagreement with) the thoughts and experiences of others.

 

You've been involved with several robust discussions and yet I doubt you would describe your posts as an attempt to bully someone off the forum.

 

This is not something I want to have drag on. No one benefits. I only repeat my request that disagreements be worded in ways that are not disrespectful.

[P_Mom]

Don't mind a bit! I encourage you to keep speaking up... I will.

 

 

 

FR88....I am marked....just watch closely.

Edited January 8, 2011 by P.Mom

[philamom]

In all honesty, this person was not pushed off this forum, and, was a tad disrespectful in his/her post to begin with. If the post were not deleted, you would be able to see that. With that said, I do hope this person continues to post, but that we can all do this in a more civil manner.

[PhillyPA]

I am a little bit confused with Lyme treatment. It is my understanding that if a child has Lyme disease that has progressed to neurological disease it is cause for at least 5-6 weeks of iv antibiotic therapy. It is considered an emergency. I am not on this forum much but I noticed that a new poster from the Pandas forum had posted here and I was interested in what she had to say. I speak from experience. Within the first year of my son getting sick we went to see Dr. Fallon. Even before the lab results came back, he put my son on iv antibiotics. My son developed regressive autism at age 5. He had seen this before with a child and the child improved rapidly and cured with iv antibiotics. It turned out the my son tested negative for Lyme and all tick borne illnesses. He completed 5 weeks of iv antibiotics. It confuses me that Lyme doctors are not treating children with neurological disease as an emergency.

 

It is also my understanding, as per my pandas doctor, that after a child gets ivig Lyme testing can be totally inaccurate - producing false positives. My son had all of his Lyme testing done before ivig.

 

I also think it makes sense that it can take a long time for ivig to heal the brain. I think that it is possible that one could get ivig, then go the Lyme route and start treatment, and then see progress. The question is that one can not know for sure if it is the Lyme treatment that is working or the ivig kicking in. I am sure that as a parent one could swear by the fact that after the new medicine their child is doing fantastic and that is the reason for progress. That may be true. However, the POSSIBILITY exists that it could have been the ivig treatment that is actually the reason that their child is doing better. This is just my thought. My own scientific theory. Not meant to be threatening or judgemental. Just a thought.