Is Igenex a valid test- PANDAS/LYME

[lyme_mom]

The bands that the other tests leave out are 31 and 34. Igenex not only tests for these most significant Lyme bands but I think they also test for more strains of lyme. There are 300 some odd strains of Lyme disease and the regular insurance covered testss test for only one strain. Lyme spirochetes are morphing so it is impossible to have a reliable antibody test -it's a moving target. The absence of antibodies does not mean the patient does not have Lyme. It's a clinical diagnosis. Also some patients don't start producing antibodies until after treatment has begun and the body can mount a defense against Lyme (same is true for bartonella and babesia).

Keep in mind that the CDC and the FDA also believe all vaccines with mercury in the

are perfectly safe. I think you need to read cure unknown, a thorough investigative work into the world of Lyme disease. It is very persuasive and can explain everything to you.

[PacificMama]

Lyme just seems to be a popular one at the moment because everyone is doing Igenex- a non-approved government test. hm

 

Not even sure what this means... "non approved government test"?

Igenex absolutely has to have government certifications to operate, and consistently passes their inspections and certifications from the appropriate agencies. They post this information, and their licenses, on their site:

http://igenex.com/files/QA_PACKAGE_2010.pdf

[philamom]

fr88-

Bottom line is, if you feel comfortable with the position your child is in, and that the protocol your using is helping, then stand by it. I know that doesn't apply to you...because you are a PANDAS adult, correct, in remission or cured?

But I do want to mention that it was 10 months in between our first and second IVIG. So the wait and see approach did not help us! The antibiotics that eventually gave us the most improvement are Tindamax and Minocin. I'm pretty sure they're not prescribed for PANDAS, yes, maybe other viruses...so potentially. And, we did have minor herxing before seeing improvement with the abx treating for lyme. There is a lot of literature stating that kids can have Neuropsychiatric symptoms as their only symptom, or they missed the early minor physical symptoms (overlooked) and it continued into chronic lyme.

 

No offense taken...just different opinions.

Edited January 9, 2011 by philamom

[PacificMama]

Wow... this is a whole lot of opinion and misinformation from a "new" poster who just joined a couple of days ago. hmmm

 

Fixit I'd have to agree with you- (after reading all morning)

 

I think its important to remember that antibiotics help a WIDE RANGE of things. Antibiotics for lyme may get rid of a Lyme infection, but they also may get rid of a lot of other bacteria that people did not know about as well. If the CDC does not find a clinically significant immune response to Lyme in my blood for the bands that are FDA approved, then I am going to leave it at that and not explore Igenex any further. Its so easy to simply "ignore doctors" because PANDAS is so rare. It doesn't help that so many doctors are unfortunately misinformed on the subject as well. However, Lyme is not a rare disease like PANDAS. It has been around for a long time and the CDC has a standard protocal to identify it and treat it. It is against Igenex for a reason- Finding too many false positives. I'm not going to waste my money.

 

People who claim that their child has done "miraculously" on Lyme treatment- That's great and I applaud you for helping your child.

However, from what I've read if you truly have Lyme-

A- You are very sick- Noticeably, physically ill- fever, arthritis etc. Especially 3rd Stage Lyme like many here claim from Igenex.

B- Antibiotics cause severe herxing and make things worse before better

 

Furthermore, I think it's important to realize that people who were treating Lyme and were doing "great" also were having IVIG done at the same time which is a treatment for PANDAS which brings DOWN anti-neuronal antibodies (root cause). You can't say that the Lyme treatment alone helped if you were doing more than one thing at once.

If anti-neuronal antibodies in response to strep are up on Cunninghams test- that is the problem- that's what needs to be treated!

 

 

This board ACN in general goes through phases- I've read for a while

First everyone looked at Immuno-Defeciencies- NOT EVERYONE HAS THEM

Then it monthly IVIG at a low dose-

Then it was HD IVIG-

Now it's lyme and co-infections- NOT EVERYONE HAS THEM

Mycoplasma isn't always a co-infection to lyme- sometimes its JUST Mycoplasma.

 

 

I think I'll just wait for this phase to pass too. I genuinely don't believe in Igenex. I'm sorry to offend anyone. I believe you can have lyme and PANDAS certainly- but from what I've read- Igenex just isn't valid =/

[Guest fr88]

.

Edited January 8, 2011 by fr88

[dcmom]

Fr88- can you jump over to the pandas forum and share your experience; what worked, what didn't.

[KeithandElizabeth]

I really feel your pain in dealing with this illness for so long and I understand how this forum has jumped from one issue to another.

 

I have two sick children with "PANDAS." Our son became completely debilitated with this illness and I tested and jumped on every bandwagon in an effort to help our son who could no longer leave the house or have anyone come into our house and who was hallucinating, urinating every 2 minutes, scared of sink knobs, etc..... So, when we were discussing strep, we tested and he was positive. When the forum started talking about mycoplasma, I had one of the IVIG nurses test for myco and he was positive (even after 5 IVIG's). And then when lyme was mentioned, we tested for lyme and were positive. I knew something had to be wrong when a child is on antibiotics and doing multiple IVIG's and still getting strep.

 

Again, IGENEX simply includes more lyme bands to test for since the CDC stopped testing for bands 31 and 34 once the lyme vaccination was due to come out.

 

My daughter never had an IVIG (only my son did) and she healed quickly from lyme treatment. She is currently off all antibiotics and is doing well. I would rate her at 95%. Our doctor feels that her remaining 5% of recovery is due to a recent mycoplasma infection as well as the remaining toxins in her system. I have canceled her IVIG, which I had rescheduled 6 times waiting to be done with lyme treatment because I was still so stuck on PANDAS. I now think that in absence of a chronic infection, many autoimmune illnesses will resolve. Dr. Shoemaker has written some papers about this topic.

 

My son had 4-5 low dose IVIG's and then 2 high dose IVIG's. We quit doing the IVIG's last February (11 months ago) and then we began lyme treatment. The combination of two antibiotics was more helpful than the IVIG's. He is doing so much better, but is really having a hard time getting rid of babesia, which is a parasite that lives in your red blood cells and is one of the more difficult lyme coinfections to eradicate. I would rate him between 88% to 96% better, depending on the day.

 

So, this is our story and I hope it can help. I do think that mycoplasma can cause neuropsychological issues because, like lyme, it lacks a cell wall and can become chronic. I think we would all be surprised at the combination of infections that can manifest mentally versus physically.

 

But, I guess I just don't want anyone to give up if IVIG and/or PEX do not work.

 

Elizabeth

Edited January 8, 2011 by KeithandElizabeth

[Fixit]

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.

 

Ok...thank you...now i get the actualy LYmes thing (though he obviously had something) with all that you listed..especially the sperm..dh said he can't remember how many ticks he has tweezed and burned off...

and i now remember something about as you get further in to treatment that the numbers then go up

[sf_mom]

My father-in-law was taught in medical school that Autism was due to parental negligence and that was only 30+ years ago. You can be sincere in your thought and sincerely wrong.

 

BUT, I too would go with whatever works and worry less about what it is called. In our experience, the Lyme protocol has been invaluable to all my children's well being. I encourage you to learn a little more about Lyme. Keep reading.

 

I have always found this youtube video to be interesting. The concept of successive infection and multiple symptom overlap. I am hopeful the PANDAS/Lyme debate will be resolved in 30 years but unfortunately we did not have time to wait so for now it is trail and error with what is working.

 

http://www.latitudes.org/forums/index.php?showtopic=10709&start=0&p=90547&hl=+successive%20+infections&fromsearch=1entry90547

 

-Wendy

[Fixit]

fr88...this is just a thought...

and i get not wanting to spend any more money...

but what if it was positive..and you were able to find something, maybe in 20 years they will tag more bacteria and parasites...if it is not "lymes" exactly...but the fact that the abx they use for lymes is different...and the way they pair them is different...there might be some results....

i have no doubt that ds has parasties, because he is an indiscriminate chewer..shirst,pens..something shiney off the ground, found in the park, etc..all his life...

 

with that said...since my doc would not challenge the dot blot with abx other than zith..and i want to get value out of every dollar...i went to the herb store and picked up those parasite pills i mentioned and did it on my own.....

 

DS is doing soooo much better since doing..i guess it would be a parasite cleanse...(12/1-12/21)

not only are his tics way down..he's just a little more responsive and engaged(but i always thougth he had a good personallity)..

 

AND...all his years at school..he has had a problem with reading...even his last standard test in late oct..early nov..tested him at early 4th grade level...he is in the 5th grade...

he handed me the new assesment taken 1/5/11.....he scored mid 6th grade...(and i don't see him reading much more, if any more)

i have not worked with him on this...i am too busy..it was the least of my problems...

i have to add though..that we are doing hd vit c, like 9000mg-started about a month before..thought we had herxing with that...but ds8 came home with strep(too many variables)

 

i hope he holds...mama needs something to give, as his 2 brothers are showing something!!

[LNN]

Furthermore- as a "NEW POSTER" you should know that I have been treated by:

Susan Swedo- Discovered PANDAS

Dr. Trifiletti- PANDAS specialist- Seen him for 12 years now

Dr. Bouboulis- PANDAS specialist

 

- I graduated college & live a normal life.

 

So just because I'm a "New Poster" by no means implies that I am uneducated when it comes to PANDAS-

I do after all live with the disease and would ideally like to help others who are struggling. Possibly like YOUR child, so he or she doesnt have to go through all the ###### I did

 

When I said government approved- I meant that it's not approved by the CDC.

 

I think I'll just wait for this phase to pass too. I genuinely don't believe in Igenex. I'm sorry to offend anyone. I believe you can have lyme and PANDAS certainly- but from what I've read- Igenex just isn't valid =/

 

I am glad to know you were able to get treatment from well respected Pandas doctors. However, many of us have patient/doctor relationships with these same doctors as well as some very respected lyme doctors. We have shared our lyme experiences with these doctors and we learn together through collaboration and yes, trial and error.

 

Most of us have spent endless hours researching and trying to educate ourselves on Pandas, lyme and autoimmunity. We do not consider ourselves uneducated on these topics. We have much still to learn and sometimes we find ourselves altering our ideas as we learn and experience new things. And while you "do live with the disease", so do we. I resent the implication that you alone can understand Pandas because you have it and we don't. Do you know what your parents went through? Do you know what any of us or any of our children have gone through? And there are parents on the forums who do have Pandas themselves. Please don't dismiss us and our collective experience because we have lived the disease through different eyes. Our lives have been just as derailed. In fact, my son recalls far less of the traumatic details than I do. Some images will stay with me for life, long after he's forgotten them.

 

We are all here trying to spare our own and other children from unnecessary pain. Not just you.

 

Most of us have spent thousands on doctors unable to help, tests or treatments that failed to end the quest for good health. We are sophisticated enough to "vet" our labs, question doctors and results, and verify any information learned on a forum through independent research and investigation. There is no magic bullet, no holy grail. Igenex is not fool-proof any more than any other lab. It is an indicator. Lyme, like Pandas, remains a clinical diagnosis and often it is only after a positive response to a particular treatment that a diagnosis can be confirmed.

 

You are certainly in your rights to question Igenex or any other test. But if you rely solely on wikipedia for your Pandas information, you will not understand a very real disease. If you chose to rely on the CDC for your lyme education, you will likewise be less than informed. I am by no means a lyme or Pandas expert. I readily admit this (as evidenced by my incorrect recollection of which bands were omitted by CDC). But your lyme statements show an incomplete understanding of the disease and of the tests, yet your statements are very authoritative. You do not have to herx to prove you have lyme any more than you have to have scarlet fever to have strep (it is a similar physical reaction).

 

Each is entitled to his own opinion, but I'm not sure why you're positing on the lyme forum if you have such negative feelings for the topic and the tests being discussed. And finally, mine is not a "claim" that my child has experienced a miraculous return to health. You have no idea how sick he was, what my struggle has been or anything else about me. I would appreciate it if you would refrain from pejorative quotation marks on words which convey my personal experiences.

 

You do not have to agree with anything on this forum. Respectful disagreement and debate is healthy. But please do not forget the respectful part.

[PacificMama]

The CDC is not in the business of approving, or disapproving, of tests or labs. So I don’t know what you mean when you say that. They sometimes offer their opinion, but they do NOT do any sort of approval process. Second, the CDC is the first to say that lyme is a CLINICAL diagnosis. They say a lyme diagnosis should not rely on lab results. Please see their lyme page for this information.

 

Perhaps you are referring to “CDC positive” on a western blot (where a person tests positive for 5 or more bands designated by the cdc). This was established by the CDC for REPORTING PURPOSES ONLY, and has nothing to do with whether a person is actually positive for lyme. But this is often much misunderstood by physicians and the general public. And again, short story is that the CDC designated bands do NOT include the 2 most specific bands for borrellia, so many labs don’t include them on their western blot test. The IGENEX western blot does include these 2 bands (which is why really knowledgeable lyme doctors use this test). Oddly enough, the CDC doesn’t include these 2 bands because they were so specific to borrelia that they were used in the short-lived lyme vaccine that came out some years back – and the cdc felt like they had exclude these 2 bands because if someone had the vaccine and then took the western blot, they might get a false positive.

 

Also, regarding the Cunningham test, I'm not sure if you understand that the antineuronal antibodies that are tested for are NOT specific to strep. Please clarify this with her if you need to. (they test separately for strep specific antibodies). The CamK and 4 Antineuronal antibodies that are tested for are not specific to any infection. Dr. Cunningham knows of several different infections that will raise these levels: strep; lyme; others. This has been stated by her and verified several times. My daughter who was lyme (cdc positive too) was one of the lyme patients asked to participate. 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.

[Guest fr88]

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 "."

[Fixit]

i don't think you should go..or edit, unless you had a little differnt twist to it...

it is good to air it out!!!

That is how a family stays strong!!

[eljomom]

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.