Is Igenex a valid test- PANDAS/LYME

[Guest fr88]

I completely agree!

 

 

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.

[sf_mom]

There are many being helped that have NOT had IVIG treatment thought to have PANDAS now being treated for Lyme and do not appear to require IVIG or PEX. One child was treated for 10 months, CaM 179 and no longer on antibiotics and maintaining progress with symptoms in remission. There are many similar stories. It is actually those that HAVE NOT had IVIG that appear to be recovering quicker and we do not know the reason why yet.

 

-Wendy

Edited January 9, 2011 by SF Mom

[Guest fr88]

There are many being helped that have NOT had IVIG treatment thought to have PANDAS now being treated for Lyme and do not appear to require IVIG or PEX. One child was treated for 10 months, CaM 179 and no longer on antibiotics and maintaining progress with symptoms in remission. There are many similar stories. It is actually those that HAVE NOT had IVIG that appear to be recovering quicker and we do not know the reason why yet.

 

-Wendy

 

 

Wendy, you mentioned that your children were born with congenital lyme. Do they have PANDAS? or PITANDS? Meaning are their symptoms from strep or lyme? Just to clarify.

Edited January 9, 2011 by fr88

[Guest fr88]

PhillyPA: I agree that it is always so difficult to tell what is working and what is not because so many different things can trigger PANDAS.

 

For example, you may think that you haven't seen " good effects" from IVIG but it may be because the IVIG is still working. Maybe the anti-neuronals are still high. Maybe you need repeat IVIG. Maybe the dosage was not correct. Also your child mayhave been exposed to a bug or to strep which caused an exacerbation. Your kid may be lying to you and saying they feel better when they don't. I did this once I was old enough to see how it impacted my family. OCD can be hidden. I hid mine for a long time in order to protect my parents because I felt like PANDAS hurt them. Allergies can impact PANDAS. Sometimes you don't see the effects of vitamins until 2 -3 months after starting them. Stress can impact PANDAS, hormones can impact PANDAS. SO many things can have an impact. In living with the disease on a daily basis, I even find it hard to see flat out-if something is helping or not. Therefore parents, although you see the disease, although you suffer from it differently- really only the person with the disease will know what works and what doesn't. Not you. Only they know what they are dealing with. You only see the outside, not the inside.

 

 

When my Cam Kinse came back at 150- my parents had NO idea that I was struggling as much as I was. They were completely clueless. I lied, said PANDAS was better when it wasn't. The disease isn't just physical- so you may think you have your kid back, but in reality might not. You are not in their head.

 

When you people say that you CURED your kids from lyme treatment, (which is entirely possible) do you have Cunningham results in your hand? Have you ever thought about PANDAS in perhaps a different perspective. How about how horrible it is to be the kid struggling to watch your parents figure out your rare disease? Have you ever thought about how awful WE feel dragging to you doctor after doctor with no answer? Have you ever thought about HOW guilty we feel? How admitting not being well means not being able to take ANY risks, having to stay home from school not being able to be normal. Honestly, lying to parents and living with OCD is a very tempting. You should know that. Only Cunninghams test will show you remission- not based on what your kid says. (no offense meant truly) I'm a teacher- kids lie when they are scared- PANDAS or not. PANDAS is VERY scary to accept and live with. Its something you should be aware of. (not saying it's the case for everyone_

 

 

It's hard to think of PANDAS outside of what you deal with in general. Ill admit I didn't see my parents suffering until I was 20. Now I respect them more for what they went through, but PANDAS isn't just gone once your well. Its always important to look at ALL sides.

I have no doubts that antibiotics have helped people & that's great. I have no doubt some people probably do have lyme. Tic bites are common. I just think its important to really know what is helping and really know if you are truly helped. Don't all hail the lyme treatment until you really know the lyme treatment is what did the trick. I've made that mistake several times, thought something worked well. Said it was the best thing, but then after waiting more realized it wasn't.

Edited January 9, 2011 by fr88

[sf_mom]

Hard to say for sure. Our older son had sudden on-set after a strep related illness in June of 2009 but he was also three weeks post annual vaccinations (elevated ASO, that were tracked at the time... symptoms were resolve along with drop in titers). The previous year to sudden on-set we had a similar event, annual vaccinations, 3 weeks later diagnosed with a sinus infection and mild coughing 'TIC' that cropped up and came and went throughout the year prior to on-set. I was told the cough was a habit.

 

The Kawasaki's event for my younger son followed by a playdate where two children had confirmed strep out of the five present. One child had 8 of 9 markers for RF at the time. Dr. K felt the Kawasaki's could have been an extreme PANDAS like response to the strep exposure. He is the child confirmed with Bartonella and Babesia. So, most likely chronic underlying infections at the time and strep exposure toppled his immune system. Call it whatever right: PANDAS, Kawasaki's, Lyme, Successive Infection, MCIS (Multiple Chronic Infection Syndrome).... He was evaluated by a psychiatrist that specializes in OCD and has helped many PANDAS patients and was confirmed to have OCD at 2 1/2.

 

My younger daughter has never had a sudden on-set, she did have an eye TIC crop up during a high fever and full body rash last year this time but resolved fairly quickly. She was tested for strep and Dr. did not believe it was Scarlet Fever. If my older son had not had what we thought was PANDAS at the time we would have missed the eye tick. It resolved with antibiotics. She has numerous other symptoms that are Lupus like in nature with horrible 'labs'.

 

-Wendy

Edited January 9, 2011 by SF Mom

[eljomom]

Was just re-reading this, and what I really, really would like understand is how that can be a valid, realistic statement?? That "only one of these is needed to confirm evidence of exposure to Bb and can confirm a clinical diagnosis of Lyme disease." My dd was 31+, which ended up being negative after confirmation test----and Dr. Harris said it was because 30-31 are cross-reactive. So how can it be said that 30 and 31 are "known Bb specific"???? Also, if you read Dr. Crist's Lyme made easy, he says that "exposure to Bb" does not mean "active Lyme" infection. This is where I think sometimes people are being treated from "exposure" (thus antibodies are present) but not active disease. Sort of like taking abx thinking it would make the titers come down. If the infection is cleared---which can be proven--but titers are still high, it's just cuz they are still high. Does that make sense? Not trying to ruffle feathers---really just trying to understand before I take my dd into the Lyme plunge.

 

 

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)

 

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

[philamom]

Was just re-reading this, and what I really, really would like understand is how that can be a valid, realistic statement?? That "only one of these is needed to confirm evidence of exposure to Bb and can confirm a clinical diagnosis of Lyme disease." My dd was 31+, which ended up being negative after confirmation test----and Dr. Harris said it was because 30-31 are cross-reactive. So how can it be said that 30 and 31 are "known Bb specific"???? Also, if you read Dr. Crist's Lyme made easy, he says that "exposure to Bb" does not mean "active Lyme" infection. This is where I think sometimes people are being treated from "exposure" (thus antibodies are present) but not active disease. Sort of like taking abx thinking it would make the titers come down. If the infection is cleared---which can be proven--but titers are still high, it's just cuz they are still high. Does that make sense? Not trying to ruffle feathers---really just trying to understand before I take my dd into the Lyme plunge.

 

 

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)

 

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

I edited my original post *not shown above*. I just posted part of a handout our llmd gave us. Other llmd's may feel differently.

 

What I should have said, is Igenex doesn't include the five non-specific 5 bands (except 41) when giving a positive result.

Edited January 9, 2011 by philamom

[philamom]

deleted

Edited January 9, 2011 by philamom

[lyme_mom]

Couple comments:

If the dot blot is positive u r positive. Unlike other Lyme tests this test looks for Lyme DNA. If negative it doesn't mean there is no Lyme because it is not easy to find. The dot blot tests for Lyme DNA in urine after a bicillin shot (thru repeated testing over several days. If they find dead Lyme in ur urine that is indisputable.

Neurogical Lyme is usually treated w a combo of antibiotics including ceftin or other one that kills Lyme in tissue. When this fails they do iv. This is what happened to my son. I think the integrative llmds are excellent and look for all potential causes of illness. The ondamed biofeedback machine offers another avenue for identifying the causes of illness. Bock in ny uses it as do some others like Sivieri in md. Beals is great too but does not have ondamed.

[sf_mom]

I would also add that with Lyme they are constantly looking for treatment response, retesting and looking for both clinical presentation and positive test results of co-infection, etc. The decision to treat is not an isolated moment. Nor does it benefit anyone to continue a treatment process that is not working. BUT with either treatment process you have to be prepared for a herxheimer response with Lyme or 'flipping of the pages' with PANDAS or you will fail to see benefit and fall short of effective treatment.

Edited January 9, 2011 by SF Mom

[KeithandElizabeth]

Our almost 12 year old daughter had the 179 Cam Kinase and 3 out of 4 very elevated anti-neuronal titers. She is the one done with lyme treatment after 10 months of treatment and she never had an IVIG. I have not redone the Cunningham titers, but may redo them in the summer. Their office said to wait as long as possible after completion of treatment.

 

Our son is still struggling with babesia and he had many IVIG's (last one was 11 months ago). I am wondering, just thinking aloud here, if perhaps the high dose IVIG's suppressed his immune system and thus making it more difficult in the long term to fight the lyme and coinfections. So, maybe the high dose IVIG's help some in the short term, but since they are ultimately suppressing the immune system, the body has more difficulty in the long term. Who knows??? I am just questioning why he has had a more difficult time fighting the lyme.

 

Again, my kids did have strep issues on top of the lyme and mycoplasma issues. Dr. Cunningham said that both strep and lyme can create an elevated Cam Kinase. So, I do not look at this as my kids did not have PANDAS and that they had lyme instead, but rather that my kids had a neurological/psychological and perhaps autoimmune response to many chronic infections. My hope is that in absence of all infections, their immune systems become stronger and they are better able to handle strep in the future. Scary to think about this since my daughter is now off antibiotics. I will update when she does deal with mycoplasma and/or strep again.

 

Elizabeth

Edited January 9, 2011 by KeithandElizabeth

[Fixit]

Our almost 12 year old daughter had the 179 Cam Kinase and 3 out of 4 very elevated anti-neuronal titers. She is the one done with lyme treatment after 10 months of treatment and she never had an IVIG. I have not redone the Cunningham titers, but may redo them in the summer. Their office said to wait as long as possible after completion of treatment.

 

Our son is still struggling with babesia and he had many IVIG's (last one was 11 months ago). I am wondering, just thinking aloud here, if perhaps the high dose IVIG's suppressed his immune system and thus making it more difficult in the long term to fight the lyme and coinfections. So, maybe the high dose IVIG's help some in the short term, but since they are ultimately suppressing the immune system, the body has more difficulty in the long term. Who knows??? I am just questioning why he has had a more difficult time fighting the lyme.

 

Again, my kids did have strep issues on top of the lyme and mycoplasma issues. Dr. Cunningham said that both strep and lyme can create an elevated Cam Kinase. So, I do not look at this as my kids did not have PANDAS and that they had lyme instead, but rather that my kids had a neurological/psychological and perhaps autoimmune response to many chronic infections. My hope is that in absence of all infections, their immune systems become stronger and they are better able to handle strep in the future. Scary to think about this since my daughter is now off antibiotics. I will update when she does deal with mycoplasma and/or strep again.

 

Elizabeth

 

I like that statement!

maybe flip neuro/physc to physc/neuro and make the p silent and our new acrynm is pnarci( or just let neurologiacl cover it all..NARCI)

 

ps...interesting about the ivig theory..i heard that before...can anyone else comment or witness something similar...

ie those w/o ivig healing/responding quicker

[sf_mom]

I believe your Dot Blot test results has a % of accuracy on it. Might check there...

[momofgirls]

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!

 

oh come on really? The Quest test for RMSF is false too? So Melinda's daughter greatly improves with lyme treatment and has multiple positive results for tick borne infections and it's lucky? Because "PANDAS" kids get better with antibiotics? Guess what? Antibiotics are an effective lyme treatment too.