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Is Igenex a valid test- PANDAS/LYME


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Really good questions, and no hard feelings taken. I asked the same. First...we did do Dr. C's test (I think we may have been one of the first.)

 

Not everyone did Igenex for testing. We did not, and everyone in my family is diagnosed with Lyme (used Quest WB for 3 of us, and LabCorp WB for the 4th.) Also, went to an LLMD for diagnosis & tx. Lyme is actually a clinical diagnosis (per CDC), and even though my 15 yo DS did not have symptoms we would have guessed were related to Lyme, we decided to trial him on doxy. He herxed worse than the rest of us combined. About 2 months into tx, he also came out the Bartonella rash on both of his inner arms. I also did not test completely positive, and did not have "typical" symptoms, but since starting on doxy, I have been herxing, as well, and certainly something had to be triggering my non-stop MycoPlasma Pneum. that I didn't know I had for 3 years.

 

My boys are both getting tx for Lyme, strep, mycoP Pneum (that I probably exposed them to) one has even had MRSA and are both getting IVIG to help improve their immune systems to fight off all this stuff. They both also tested positive for an immune deficiency (per standardized, govt. approved testing.)

 

I think it's easy to question why so many people are finding a Lyme connection, but maybe that's really one of the underlying problems in many of these kids for so long. Then again, how many of us have not been questioned ad infinitum about the "questionable" PANDAS dx?

 

Actually, my understanding is that Igenex does NOT find positive in everyone. There's an extra band or 2 (am I correct on that one?) that was taken out by the other tests, because of a vaccine for Lyme that was either being created or was created, and would have given too many false positives (am I correct on that one, too?)

 

Anyway, no one even knows exactly what causes PANDAS/PITANDS anyway, and I can tell you from my clinical practice (I work with children,) I keep finding kids who I am "positive" have something of the sort...whether triggered by strep, staph, Lyme (yep...they're all in question in my patients), and I don't have a big practice, and it's not unique to where I would find kids with this diagnosis.

 

So, although a very good question that you've asked (and I certainly asked the same before I tested,) I can't question the fact that my kids seem to be getting better with tx. And, the bottom line is...that's all we want for them. :)

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Igenex does not find lyme in everyone. It found it in my son, it did not find it in my daughter. A subsequent Igenex FISH test was also negative for my daughter. As for the CDC and the politics of lyme testing, I highly recommend you read "Cure Unknown" by Pamela Weintraub. It goes into great detail about testing. There are also links under the "helpful threads" section at the top of the lyme forum that may explain things far better than a post from anyone.

 

Just like ASO/Anti-BNase B tests - these tests look for antibodies to an antigen, not for the antigen itself. Any test that looks for clues of a needle in the haystack rather than the needle itself will be open for debate. There is not yet any test for either disease that is a "smoking gun."

 

My son (with lyme/Bartonella) had CamK II of 183. Two of his four other markers were significantly elevated (don't have results nearby). Dr Cunningham and I spoke about his results and she felt his results were compelling for Pandas, as did two Pandas specialists. We further have direct correlation with diagnosed strep. So no question Pandas was at play.

 

However, we live in Connecticut, have known tick bites and have seen failure to stay in remission with plasmapheresis or HD IVIG. He had some symptoms that are not commonly listed for Pandas yet were commonly known by several Pandas families (the ones now on this lyme forum) such as muscle/joint pain, brain fog and unexplained fevers. He had both choriform movements (diagnosed by a Pandas neurologist, not me) and myoclonic tics which are related to tick-borne illness, not Pandas. I do not understand why people insist that a child can only have Pandas or lyme and not both. If someone has cancer does it mean they can't get bitten by an infected tick?

 

There is a hostility against the Pandas/lyme combo that I don't understand. Clearly there are plenty - the majority I would think - who have only one or the other. But I just can't get my head around why the two are seen as mutually exclusive.

Edited by LLM
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My son was negative on CDC. However, as Tpotter mentioned - the CDC test deliberately omits several antibody bands that are highly specific to B. Burgdorferi - Bands 34 and 39 I believe. The CDC itself states that their criteria is for reporting purposes only, and is not for clinical diagnosis. When a vaccine was in development, it was decided that bands 34 and 39 had to be omitted. Otherwise, everyone who got the vaccine and developed antibodies to 34 and 39 would test "positive' for lyme when they didn't have it. The vaccine tanked, but the CDC has never updated its guidelines. Yet the CDC has acknowledged that these are the most telling of all bands. Igenex tests for these bands. CDC Western blots do not. That is why you can test negative with Quest and positive with Igenex. They are testing for different markers.

 

Again, I highly recommend Cure Unknown if you want to understand the history, the controversy and the science behind it.

 

As TPotter also said, all I know is that Pandas treatments only brought my son so far. Since starting a lyme protocol of different antibiotics, his recovery has been nothing short of miraculous - a sentiment shared by my son's teachers, doctors and family. So if it works, I don't care what you call it. I'm just happy to have my son back.

 

As a recovering Pandas child, I'm sure you can appreciate that "proof is in the pudding" sentiment, as I'm sure you yourself encountered much skepticism and medical prejudice on your road to recovery.

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Do you mind me asking which antibiotics your son is on? Did he have herxing?

 

 

My son was negative on CDC. However, as Tpotter mentioned - the CDC test deliberately omits several antibody bands that are highly specific to B. Burgdorferi - Bands 34 and 39 I believe. The CDC itself states that their criteria is for reporting purposes only, and is not for clinical diagnosis. When a vaccine was in development, it was decided that bands 34 and 39 had to be omitted. Otherwise, everyone who got the vaccine and developed antibodies to 34 and 39 would test "positive' for lyme when they didn't have it. The vaccine tanked, but the CDC has never updated its guidelines. Yet the CDC has acknowledged that these are the most telling of all bands. Igenex tests for these bands. CDC Western blots do not. That is why you can test negative with Quest and positive with Igenex. They are testing for different markers.

 

Again, I highly recommend Cure Unknown if you want to understand the history, the controversy and the science behind it.

 

As TPotter also said, all I know is that Pandas treatments only brought my son so far. Since starting a lyme protocol of different antibiotics, his recovery has been nothing short of miraculous - a sentiment shared by my son's teachers, doctors and family. So if it works, I don't care what you call it. I'm just happy to have my son back.

 

As a recovering Pandas child, I'm sure you can appreciate that "proof is in the pudding" sentiment, as I'm sure you yourself encountered much skepticism and medical prejudice on your road to recovery.

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We are another example of a family where hdIVIG was not bringing sustained results and then we further explored lyme disease. My daughter was positive on the lyme specific bands that were omitted from the CDC test, specifically band 31 and band 34.

 

Our LLMD feels that labels, such as PANDAS, MS Lupus, often prevent people from seeking the possible true culprit to one's problems. We now feel that the lyme, strep, babesia, bartonella and mycoplasma were all bacteria and parasites that were triggering the neuropsychiatric symptoms versus that our children have two distinct illnesses, PANDAS and Lyme. As we get rid of each bacteria/parasite, our children seem to become stronger and stronger and their "PANDAS" symptoms decrease.

 

My husband and I were not positive on the IGENEX tests and I know of many other people who had negative IGENEX tests.

 

My heart went out to you when you posted yesterday. I can only imagine what you have gone through during these last 12 years.

 

My suggestion would be to find a great LLMD, who can test for a multitude of possible infections that may be contributing to your neuropsychiatric issues.

 

I wish someone had told me to do that for my children at the beginning of our journey. Both of my children had high CamKinase and my daughter (who had the least amount of symptoms) had extremely high anti-neuronal titers.

 

Elizabeth

Edited by KeithandElizabeth
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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 specific antibodies. CDC Western Blot IgG surveillance 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 because all antibodies in IgG were once IgM. IgM converts to IgG in about two months unless there is a persisting infection driving a persisting Igm reaction. 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. There can be no false positives if only Bb genus specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having Bb specific antibodies. This does not make sense.

 

This was in a handout from our LLMD.

 

Igenex only test for Bb specifc antibodies. EDIT: By Igenex criteria, IgM/IgG is considered positive if two or more doubled starred bands are present. (Double starred bands are 23-25,31,34,39,41,83-93). Presence of only one double starred band or Indeterminate double starred bands in a negative report may indicate clinical signifigance.

 

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

Edited by philamom
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Thank you for asking this question....

As i read more and more.....and more people test pos for lymes....i just don't get it either!?!?!(of course we are talking about sick children..so i guess there is more of a likelyhood of these children having something than a "healthy"child)

 

I have alot to learn....and that is why i asked..if my results are really lyme...i just wonder if maybe its "not lymes"...but some other parasite, bacteria..what ever the test is picking up////

But if the protocal works and gets rid of what ever this is...that is really what is important to me...We can call this SOT too...though it would be nice to know what i am going after.....

 

 

i have a couple questions...

 

did the cdc take out...or leave in band 39??? that is the one that came up ind igm in april 2010..(41+ on igm and igg)

i think we tested with a regular lab just before this and was neg.....

does this mean it was a new infection and why only igm registered??

or the infection was just starting to build up?????

yes i have taken tics off of ds(years ago)...but not imbedded.....

though i think...cant swear that ds had cellusis???

here is pic that may have triggered a memory for me...again..i think...this was 5 years or so ago when we lived in pa..and i believe it was my sons ear?!?!...i think

http://www.righthealth.com/topic/Pictures_Of_Cellulitis?p=l&as=goog&ac=519&kgl=5900644

 

can ds have been bitten that long ago and just show antibodies now???

to me the orignal results with only 1+ on 41 and an ind on 39 means mild....

 

we did have dogs...??

is it possible we all have it..passed through sharing of cups???.

can it be passed via sperm????

if i have it??? could i have passed it to all of my children???

and i guess their respones to it tic based....mine..miquito magnet??

Oh...can it be passed from misquistos?

 

I will be posting more annoying questions i'm sure..i'm trying to read as much as i can..but maybe some hear/or know stuff i haven't gotten to as my questions accumulate..

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Fixit:

 

 

* You can pass it to your children along with Bartonella they are not sure with Babesia

 

* They have typed the BB off sperm and is believe to be passed horizontally and of course vertically

 

* They know a certain % misquistos carry Lyme, not sure if its transmittable to humans

 

* Bartonella is thought to come from Tics, Fleas, Lice and Sand Flys and is consider a RBC parasite

 

* Babesia is also considered a RBC parasite

 

* The low antibody responders are typically the sickest and stronger antibody responders show a stronger antibody response because they are healthy, so exactly the opposite of how you are viewing results

 

* Mycoplasma can be transmitter via a cough, mucus, etc. Lyme/co-infections is not but they do not know all vectors

 

* Transmission rate from mother to child is thought to be 60%

 

 

There is a lot of information tagged regarding testing, interpretation of WB, IgG and IgM results at top of forum.

Edited by SF Mom
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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.

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I'm pretty sure I just recently read that people with Lyme disease can develope Autoimmune disease. I would think that Lyme Disease could be the underlying cause of many PANDAS kids immune disfunction. ??? Who knows, but it sure seems plausible to me.

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