IgeneX Question

[Guest fr88]

For those of you who used IgeneX, tested positive, and treated according to their results: Did your child have just a positive Igg antibody? A positive IgG and IgM antibody? or just a positive IgM antibody?

 

 

 

I ask because of this article: http://www.ncbi.nlm.nih.gov/pubmed/15695691

 

Cunningham talks about cross reactivity here. If in fact strep and lyme do cross react as implied above, I wonder if the strep antibodies that PANDAS kids have are making IgeneX tests come back positive when in reality they are not. Did your children have psychical symptoms of lyme? From what doctors have told me, IgM antibodies are the first line of attack and then the IgG antibodies are what actually kills the bacteria. Therefore, if an infection truly existed, both should present.

 

There are exceptions of course, Mycoplasma lacks a cell wall so it can hide in cells tricking the body into thinking the infection is gone. Strep also can become intracellular. There are others I’m sure- that’s simply to name two.

 

Some also say a positive IgM can indicate chronic lyme- Perhaps that’s true, but maybe it’s not lyme at all. It could be chronic strep which is just cross-reacting on a very sensitive lyme test. PANDAS was originally associated with strep- not lyme disease. What do you think- it’s just an opinion.I am by no means attacking how you got your child well. Please don’t take offense.

Edited January 9, 2011 by fr88

[philamom]

My daughter had a positive IgM and negative IgG & co-infection panel through Igenex. Two months later my daughter tested positive for Rocky Mountain Spotted Fever IgG with Quest and Bartonella with Specialty Labs. They are tick borne diseases (co-infections).

 

She also has elevated IgG for the following:

Mycoplasma P

Cytomegalovirus

C. pneumoniae

HSV 1 AB

Herpesvirus 6

Epstein Barr Virus VCA

Epstein Barr Virus EBNA

 

Failed 10 of 14 Strept Pneumoniae Serotype

Failed H. Influenzae Response

 

Elevated Liver Enzymes & PTT LA Screen

Low level of Carbon Dioxide

Edited January 9, 2011 by philamom

[sf_mom]

We did DNA testing not antibody testing. Our younger son is positive for Babesia and Bartonella. All three of my children are greatly improved with the correct antibiotic treatment.

 

There are numerous alternative tests (inclusive of typing off soft tissue from the knee) that can rule in or out Lyme. I had thought about banking my children's umbilical cord when born... oh, how wish had done that now.

 

I believe if there is an indication of LYME what so ever... Then with a 'good' LLMD and proper antibiotic protocol it is well worth the trail treatment period to see if there is improvement LYME OR NOT. We are and will continue help one child at a time and they are getting better and that is all that matters.. Call it what you like.

 

-Wendy

Edited January 9, 2011 by SF Mom

[Guest fr88]

SF Mom:

Glad to hear your child is doing better, I was just wondering if you could tell me what lyme treatment worked for your children? Did you have IVIG as well at the same time?? I know of people who are doing IVIG as well as a taking lyme abx as well. I apologize if my questions are too personal.

 

 

We did DNA testing not antibody testing. Our younger son is positive for Babesia and Bartonella. All three of my children are greatly improved with the correct antibiotic treatment.

 

There are numerous alternative tests (inclusive of typing off soft tissue from the knee) that can rule in or out Lyme. I had thought about banking my children's umbilical cord when born... oh, how wish had done that now.

 

I believe if there is an indication of LYME what so ever... Then with a 'good' LLMD and proper antibiotic protocol it is well worth the trail treatment period to see if there is improvement LYME OR NOT. We are and will continue help one child at a time and they are getting better and that is all that matters.. Call it what you like.

 

-Wendy

Edited January 9, 2011 by fr88

[philamom]

fr88-

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction.

[sf_mom]

I have three children with congenital Lyme. One has had 3 hdIVIGs (positive DNA testing for Lyme). He is one year post his last IVIG treatment this week. He has no OCD and no TICs... predominate TIC presentation with mild OCD in June of 2009. My younger son had Kawasaki at 5 1/2 months of age and administered hdIVIG to save his life. He is now 3 1/2 years of age and has not had a treatment since that time. His twin sister has identical lab results inclusive IgG 1 in the 200s etc. etc. etc. They are strangely improving at the same rate and similar resolution to full body rashes. My children were carried in-utero by me but they are not all biologically related and they all have elevated CaM Kinase in PANDAS range.

 

They are on the following:

 

DS1: Alinia/Azithro/Cedax/Olive Leaf Extract

 

DS2: Alinia/Azitrho/Sulfamate

 

DD: Alinia/Azithro/Rifampin

 

Me: Doxy/Tindamax and will add Omnicef on the 15th.

 

Personally, on my good days (mostly good) I am feeling better than I have since my children's birth. My symptoms were identical to Fibromyalgia prior to Lyme diagnoses.

[NancyD]

My DD14 is IgM positive for Lyme and IgG negative and has very low CD3/CD57 (24), in the the chronic range (almost severe). She is also IgG positive for Myco P and IgM negative. So far negative for babesia, bartonella, ehrlicliosis, etc. She exhibited clear LD symptoms. I am IgM positive for LD and IgG IND, IgG positive for Myco P and IgM negative. I have had clear LD symptoms since October. So far negative for Babesia, Bartonella, Ehrlicliosis, etc. My CD3/CD57 is 158. We have both responded well to LD treatment.

[RNmom]

Re: **** Cunningham talks about cross reactivity here. If in fact strep and lyme do cross react as implied above, I wonder if the strep antibodies that PANDAS kids have are making IgeneX tests come back positive when in reality they are not. Did your children have psychical symptoms of lyme? From what doctors have told me, IgM antibodies are the first line of attack and then the IgG antibodies are what actually kills the bacteria. Therefore, if an infection truly existed, both should present. ****

 

The simple explanation I got was that the difference between IgM and IgG has to do with differences in the amount of time it takes for these immunoglobulins to mobilize in response to antigens . They are part of a cascade of @ 5 different Ig immunoglobulins. For example, IgE type immunoglobulins are "immediate responders." They are the antibodies involved in anaphylaxis (i.e.: latex allergy, peanut allergy, bee stings ... you get the idea). IgM reflect new infections. IgG reflect older infections. I am oversimplifying things but that is the rule of thumb which I am using to understand things. (BTW, I am often told that folks who work with Lyme think of "new" as something less than 12 weeks -plus or minus a few.)

 

The Ig cascade is very complicated. I learned a long time ago to have great respect for all that we do not understand about it. It saddens me to see folks caught up in a struggle with an aspect of medicine that confuses most doctors. I have a cousin with IgE hypersensitivity and eosinophilia. Her physician once told me that 50 years ago she would have not survived. Medicine has advanced to where it can help her now - but she is by no means under control or cured.

 

It may be possible that in the next year or two more docs will better understand and trust the "My Lyme ID" test. It measures the cytokins rather than the antibodies and gets around many of the questions about 'the # of bands and/ or the meanings of IgM and IgG.' We had both Igenex and "My Lyme ID" done for my ds14.

 

Per Igenex ds14 is IgM negative but IgG positive.

He has one equivocal IgM band: #41

He has two clearly positive IgG bands: #31 and #41.

He has neuro-psychiatric symptoms.

Two LLMD's and one PANDAS doc have all called this neuro-psychiatric Lyme.

BUT, none of the three have been willing to say that ds14 doesn't have PANDAS now that we are dealing with Lyme.

Instead, the PANDAS doc talked about how neuro-psychiatric Lyme can also look like PANDAS. That doctor also went on to say that the PANDAS name will most likely be changed. (There were many layers of meaning in that last statement but we did not have time to discuss it properly - although I wish we could have!)

 

I am hopeful that the medical community is exponentially growing in it's understanding of our complicated kids.

 

The My Lyme ID Test showed three high equivocal bands and lots of very high cytokine levels. After getting to know my two LLMD's well I made the decision (for many reasons) to go with the LLMD who happens to rely on the My Lyme ID test to track treatment response. You can watch the cytokine levels go down over time if you are treating properly and successfully.

 

Lyme is not the whole story with my ds14 however. Coinfections are a huge part of the problem. I think it was SF mom who talks about cytokine responses?? I think that is where the overlap is in my son's clinical picture. For him the clinical picture seems to be all about neuro-psychiatric symptoms driven by inflammatory responses both infectious and autoimmune. Getting that all sorted out is going to take a long time and a lot of trial and error.

 

I feel attached to the PANDAS forum where I started out. I do not want to leave it. We would be in bad shape were it not for all the information about PANDAS symptoms and treatments that I learned on the PANDAS forum. however, I also really like the Lyme forum for great explanations of "all things Lyme." I need both and hope I can go back and forth without upsetting anyone. My posts are never meant to be dogmatic. I am just sharing my story ... It relieves that unique sense of fear that only isolation in a storm can stir up!

Edited January 11, 2011 by RNmom

[Fixit]

Some also say a positive IgM can indicate chronic lyme- Perhaps that’s true, but maybe it’s not lyme at all. It could be chronic strep which is just cross-reacting on a very sensitive lyme test. PANDAS was originally associated with strep- not lyme disease. What do you think- it’s just an opinion.I am by no means attacking how you got your child well. Please don’t take offense.

 

you could be right...

maybe...as there are sooooo many other bacteria,parasites,virus,germs,invaders, we don't know about...it's just one of those that respond to lymes...long term mcyo p...protocal.....

i wish the docs knew/know...but they are ALL learning with us..and when a doc says "NO, No way"..science stops and we are in a world of hurt....

 

SF...i did save my younger boys cord blood....is there something we can do with that!?!?!?!?!

i would have saved the oldest one's but did not know about these cord banks at the time....

[Iowadawn]

Some also say a positive IgM can indicate chronic lyme- Perhaps that’s true, but maybe it’s not lyme at all. It could be chronic strep which is just cross-reacting on a very sensitive lyme test. PANDAS was originally associated with strep- not lyme disease. What do you think- it’s just an opinion.I am by no means attacking how you got your child well. Please don’t take offense.

 

you could be right...

maybe...as there are sooooo many other bacteria,parasites,virus,germs,invaders, we don't know about...it's just one of those that respond to lymes...long term mcyo p...protocal.....

i wish the docs knew/know...but they are ALL learning with us..and when a doc says "NO, No way"..science stops and we are in a world of hurt....

 

SF...i did save my younger boys cord blood....is there something we can do with that!?!?!?!?!

i would have saved the oldest one's but did not know about these cord banks at the time....

 

Fixit-

 

Pardon me for not following whose children has lyme or not. But if your children have Lyme or you do or think you do, and then enter the PANDAS, I would be contacting Cunningham and sharing that you have cord blood, and ask if this would be of interest to her or others she knows. It may be invaluable to research, or it may not---She is a wonderful gal who would not mind this type of question. I'd shoot her an email el pronto. MHO

 

Dawn

 

My intuition says it will be an "A-ha" discovery that solves this riddle, or puts us on better footing for tx options. Just my gut. It's been right too much.

Edited January 11, 2011 by Iowadawn

[sf_mom]

Wow, I agree with Iowa Dawn..... Is your younger son symptomatic at all for PANDAS/Lyme? Does he have elevated CaM Kinase? I think if they could type for Strep/Lyme/Bartonella it would be very valuable information to Madeleine Cunningham. I do know that they have tested cord blood for Lyme previously and they are also testing soft tissue and knee fluids for Lyme. So, it can be done but I don't know if freezing it enters into equation. If I had ours I would have followed through with both our LLMD and Madeleine to see how I would have them typed. In our case specifically for Lyme to confirm congenital Lyme Diagnoses.

 

Here is how they do it at birth... taken from blog.

 

IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:

 

* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth

 

*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them

 

*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)

 

*For reference, the test number to request is #477

 

*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample

 

*The cost of the test is $235 (A ###### of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)

 

*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit

 

*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance

 

*Results are sent to your home. It's up to you to report the findings back to your LLMD

 

*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics

 

 

 

 

 

-Wendy

Edited January 11, 2011 by SF Mom